Getting Genetic-Based Health Data Just Got Easier in Canada and the U.K.
How Big Data Is Changing Medicine
Consumer Gene Tests Face Uncertain Future
Click to "Like" My Genome: Part Two
Consumer Genetic Testing Company 23andMe Faces Its Own Test From the FDA
Should Every Newborn Undergo Genetic Testing?
Click to “Like” My Genome: Home Genetic Testing Goes Social
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The wonderful genetics of chimerism. (Kenny Louie/Wikimedia Commons)\" width=\"800\" height=\"466\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">In some cases, a man can be both father and uncle to the same child. The reason? Look to the wonderful genetics of chimerism. (\u003ca class=\"nofancybox\" href=\"http://commons.wikimedia.org/wiki/File:A_smiling_baby.jpg\">Kenny Louie/Wikimedia Commons\u003c/a>)\u003c/figcaption>\u003c/figure>\n\u003cp>A couple who used a fertility clinic to conceive was ready to sue when the child’s blood type didn’t match up with mom and dad’s. Obviously the clinic had used the wrong sperm or made some other awful mistake. Except in this case they probably hadn’t.\u003c/p>\n\u003cp>The couple, whose case I worked on, gave me permission to write about it; information related to their identity has been withheld.\u003c/p>\n\u003cp>A detailed genetic test showed the baby was definitely related to dad, but did not appear to be a parent. Instead the man looked like an uncle at the DNA level. One way he could be both an uncle and a father to the same child would be if he was a human chimera.\u003c/p>\n\u003cp>A human chimera forms in the womb when fraternal twins fuse together very early in development. Because fraternal twins do not have identical DNA, the end result is someone with two sets of DNA. Some of his or her cells have the DNA from the first twin and the rest have the DNA from the second twin. A chimera is a single person with the DNA of two siblings.\u003c/p>\n\u003cp>[contextly_sidebar id=”AxzxTZDBqcfssMPlXfDPaUAINuWnpLOh”]\u003c/p>\n\u003cp>If this is what happened in this dad’s case, then we can easily explain the fact that he looks like an uncle at the DNA level. By chance, the DNA in the cells from the lining of the father’s mouth (sent in for genetics testing) was from one twin, and the DNA in the sperm that fertilized his wife’s egg was from the other twin. With the right genetic test, he would look like an uncle even though he was the dad.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>And luckily for this couple they chose the right genetic test. Had they gone with a standard paternity test, they may have missed that they were related to the child, as those tests are not set up to see aunt/uncle and niece/nephew relationships. The most likely result would have been that the couple would have concluded the child was not theirs.\u003c/p>\n\u003cp>At the very least this probably would have ended in a lawsuit against the fertility clinic. The couple might also have given up the child even though the child was conceived with the man’s sperm and the woman’s egg. A real tragedy was averted by the growing power of genetic testing.\u003c/p>\n\u003cp>\u003cstrong>It Started With a Blood Test\u003c/strong>\u003c/p>\n\u003cp>This couple was having difficulty conceiving and so underwent \u003ca href=\"http://americanpregnancy.org/infertility/intrauterine-insemination/\">intrauterine insemination\u003c/a> (IUI). Basically, the man’s sperm was placed directly into his wife’s womb.\u003c/p>\n\u003cp>She became pregnant and they had a healthy baby. But a blood test showed the baby was AB while both parents were A. Usually two A parents can have only A or O babies (click \u003ca href=\"http://genetics.thetech.org/ask/ask199\">here \u003c/a>for why that is). This was obviously worrisome.\u003c/p>\n\u003cp>Still, there are \u003ca href=\"http://genetics.thetech.org/ask/ask115\">rare exceptions\u003c/a> where A parents can have an AB child, and the parents in this case wanted to rule those out. This is why they turned to a genetic test.\u003c/p>\n\u003cp>The first thought was simply to determine paternity. If the child did not match the father, it would mean the clinic had made a mistake and used the wrong sperm.\u003c/p>\n\u003cp>But instead of a simply paternity test, the couple used a more sensitive genetics test that’s offered by companies like 23andMe and ancestryDNA. (They used 23andMe in this case.) And it was a good thing they did. They were able to see that the child was related to dad, but not in the way expected. Here are the results:\u003c/p>\n\u003cp>\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2015/03/sharper-chart.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2015/03/sharper-chart.jpg\" alt=\"sharper chart\" width=\"396\" height=\"661\" class=\"alignright size-full wp-image-28014\">\u003c/a>\u003c/p>\n\u003cp>Each bar on this chart represents a chromosomal pair comparing the child’s DNA with the dad’s. Remember, we get one chromosome in each pair from mom and one from dad, so that we are 50% related to each parent. This means a parent and a child should completely share one chromosome in each pair. If that were the case, each bar in this image would show one long, unbroken green line. This is not what we see.\u003c/p>\n\u003cp>If the two were unrelated or only distantly related, they would share very little of their DNA. There would be an occasional bit of green that represents some distant relative. (Click \u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2015/03/3rd6thCousins.jpg\">here \u003c/a>for an image of a 3\u003csup>rd\u003c/sup>-6\u003csup>th\u003c/sup> cousin and \u003ca href=\"http://genetics.thetech.org/ask/ask284\">here \u003c/a>for lots of different relationships.)\u003c/p>\n\u003cp>These two are somewhere in between. They share a lot of their DNA in most chromosome pairs. Totaling everything up shows they are about 25% related which is how much DNA an uncle would share with a niece or nephew.\u003c/p>\n\u003cp>Given that the parents visited a fertility clinic, the best explanation is that the father is a chimera. The DNA in the fertilizing sperm was able to contribute a “B” to the child’s blood type, giving the child type AB blood, even though the DNA in dad’s cheek cells lacks that “B.”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>All of this goes to show that when something like blood types do not match up, there could be a perfectly reasonable genetic explanation for what was taught in school to be an impossible combination.\u003c/p>\n\n","blocks":[],"excerpt":null,"status":"publish","parent":0,"modified":1704932175,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":22,"wordCount":904},"headData":{"title":"Powerful Genetic Test Prevents Paternity Mix-Up | KQED","description":"A couple who used a fertility clinic to conceive was ready to sue when the child’s blood type didn’t match up with mom and dad’s. Obviously the clinic had used the wrong sperm or made some other awful mistake. Except in this case they probably hadn’t. The couple, whose case I worked on, gave me","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Powerful Genetic Test Prevents Paternity Mix-Up","datePublished":"2015-03-09T14:00:41.000Z","dateModified":"2024-01-11T00:16:15.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"sticky":false,"path":"/science/27892/powerful-genetic-test-prevents-paternity-mix-up","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cfigure id=\"attachment_27893\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2015/03/BabyBlues.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-27893\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2015/03/BabyBlues.jpg\" alt=\"In some cases a man can be both father and uncle to the same child. The wonderful genetics of chimerism. (Kenny Louie/Wikimedia Commons)\" width=\"800\" height=\"466\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">In some cases, a man can be both father and uncle to the same child. The reason? Look to the wonderful genetics of chimerism. (\u003ca class=\"nofancybox\" href=\"http://commons.wikimedia.org/wiki/File:A_smiling_baby.jpg\">Kenny Louie/Wikimedia Commons\u003c/a>)\u003c/figcaption>\u003c/figure>\n\u003cp>A couple who used a fertility clinic to conceive was ready to sue when the child’s blood type didn’t match up with mom and dad’s. Obviously the clinic had used the wrong sperm or made some other awful mistake. Except in this case they probably hadn’t.\u003c/p>\n\u003cp>The couple, whose case I worked on, gave me permission to write about it; information related to their identity has been withheld.\u003c/p>\n\u003cp>A detailed genetic test showed the baby was definitely related to dad, but did not appear to be a parent. Instead the man looked like an uncle at the DNA level. One way he could be both an uncle and a father to the same child would be if he was a human chimera.\u003c/p>\n\u003cp>A human chimera forms in the womb when fraternal twins fuse together very early in development. Because fraternal twins do not have identical DNA, the end result is someone with two sets of DNA. Some of his or her cells have the DNA from the first twin and the rest have the DNA from the second twin. A chimera is a single person with the DNA of two siblings.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>If this is what happened in this dad’s case, then we can easily explain the fact that he looks like an uncle at the DNA level. By chance, the DNA in the cells from the lining of the father’s mouth (sent in for genetics testing) was from one twin, and the DNA in the sperm that fertilized his wife’s egg was from the other twin. With the right genetic test, he would look like an uncle even though he was the dad.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>And luckily for this couple they chose the right genetic test. Had they gone with a standard paternity test, they may have missed that they were related to the child, as those tests are not set up to see aunt/uncle and niece/nephew relationships. The most likely result would have been that the couple would have concluded the child was not theirs.\u003c/p>\n\u003cp>At the very least this probably would have ended in a lawsuit against the fertility clinic. The couple might also have given up the child even though the child was conceived with the man’s sperm and the woman’s egg. A real tragedy was averted by the growing power of genetic testing.\u003c/p>\n\u003cp>\u003cstrong>It Started With a Blood Test\u003c/strong>\u003c/p>\n\u003cp>This couple was having difficulty conceiving and so underwent \u003ca href=\"http://americanpregnancy.org/infertility/intrauterine-insemination/\">intrauterine insemination\u003c/a> (IUI). Basically, the man’s sperm was placed directly into his wife’s womb.\u003c/p>\n\u003cp>She became pregnant and they had a healthy baby. But a blood test showed the baby was AB while both parents were A. Usually two A parents can have only A or O babies (click \u003ca href=\"http://genetics.thetech.org/ask/ask199\">here \u003c/a>for why that is). This was obviously worrisome.\u003c/p>\n\u003cp>Still, there are \u003ca href=\"http://genetics.thetech.org/ask/ask115\">rare exceptions\u003c/a> where A parents can have an AB child, and the parents in this case wanted to rule those out. This is why they turned to a genetic test.\u003c/p>\n\u003cp>The first thought was simply to determine paternity. If the child did not match the father, it would mean the clinic had made a mistake and used the wrong sperm.\u003c/p>\n\u003cp>But instead of a simply paternity test, the couple used a more sensitive genetics test that’s offered by companies like 23andMe and ancestryDNA. (They used 23andMe in this case.) And it was a good thing they did. They were able to see that the child was related to dad, but not in the way expected. Here are the results:\u003c/p>\n\u003cp>\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2015/03/sharper-chart.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2015/03/sharper-chart.jpg\" alt=\"sharper chart\" width=\"396\" height=\"661\" class=\"alignright size-full wp-image-28014\">\u003c/a>\u003c/p>\n\u003cp>Each bar on this chart represents a chromosomal pair comparing the child’s DNA with the dad’s. Remember, we get one chromosome in each pair from mom and one from dad, so that we are 50% related to each parent. This means a parent and a child should completely share one chromosome in each pair. If that were the case, each bar in this image would show one long, unbroken green line. This is not what we see.\u003c/p>\n\u003cp>If the two were unrelated or only distantly related, they would share very little of their DNA. There would be an occasional bit of green that represents some distant relative. (Click \u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2015/03/3rd6thCousins.jpg\">here \u003c/a>for an image of a 3\u003csup>rd\u003c/sup>-6\u003csup>th\u003c/sup> cousin and \u003ca href=\"http://genetics.thetech.org/ask/ask284\">here \u003c/a>for lots of different relationships.)\u003c/p>\n\u003cp>These two are somewhere in between. They share a lot of their DNA in most chromosome pairs. Totaling everything up shows they are about 25% related which is how much DNA an uncle would share with a niece or nephew.\u003c/p>\n\u003cp>Given that the parents visited a fertility clinic, the best explanation is that the father is a chimera. The DNA in the fertilizing sperm was able to contribute a “B” to the child’s blood type, giving the child type AB blood, even though the DNA in dad’s cheek cells lacks that “B.”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>All of this goes to show that when something like blood types do not match up, there could be a perfectly reasonable genetic explanation for what was taught in school to be an impossible combination.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/science/27892/powerful-genetic-test-prevents-paternity-mix-up","authors":["6177"],"categories":["science_30","science_39"],"tags":["science_304"],"featImg":"science_27893","label":"science"},"science_26186":{"type":"posts","id":"science_26186","meta":{"index":"posts_1591205157","site":"science","id":"26186","score":null,"sort":[1421116209000]},"guestAuthors":[],"slug":"23andme-strikes-another-deal-with-big-pharma","title":"23andMe Strikes Another Deal With Big Pharma","publishDate":1421116209,"format":"aside","headTitle":"23andMe Strikes Another Deal With Big Pharma | KQED","labelTerm":{"site":"science"},"content":"\u003cfigure id=\"attachment_26269\" class=\"wp-caption alignleft\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2015/01/23andMe_Box-e1421263543823.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-26269 size-full\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2015/01/23andMe_Box-e1421263543823.jpg\" alt=\"\" width=\"640\" height=\"364\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">23andMe sells genetic testing kits and has recently started sharing that data with pharmaceutical companies. (23andMe)\u003c/figcaption>\u003c/figure>\n\u003cp>It hasn’t taken long for \u003ca href=\"https://www.23andme.com/\">23andMe\u003c/a>, the Mountain View-based genetics company, to strike another deal with big pharma.\u003c/p>\n\u003cp>Last week, the Google-backed firm announced a $60 million agreement to allow Genentech to use participant data to study Parkinson’s disease. A new agreement announced Monday will give Pfizer access to 5,000 people in the company’s database to study the genetics of lupus.\u003c/p>\n\u003cp>It could be a new way to come up with treatments, says Emily Drabant Conley, Director of Business Development.\u003c/p>\n\u003cp>“We’re quite hopeful that the information is being leveraged to move us toward therapies and cures,” Drabant Conley says.\u003c/p>\n\u003caside class=\"pullquote alignleft\">‘We’re quite hopeful that the information is being leveraged to move us toward therapies and cures.’\u003ccite>— Emily Drabant Conley,\u003cbr>\n23andMe Director of Business Development\u003c/cite>\u003c/aside>\n\u003cp>The biotech firm sells $99 personal DNA kits that, through one dab of saliva, can tell consumers about their genetic make-up and ancestry. It has enrolled more than 800,000 participants and 650,000 of those have consented to share their medical information.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“Not only are they benefiting by learning about themselves,” says Drabant Conley, “but when they consent to participate in research it gives us the ability to go back to them repeatedly over time and collect more info and engage them in the research that our partners are doing.”\u003c/p>\n\u003cp>Critics say the company is making millions by selling its users’ data. Concerns include privacy breaches and whether insurance companies would increase rates if they had access to a member’s genetic history.\u003c/p>\n\u003cp>23andMe came under attack in 2013 when the Food and Drug Administration issued a \u003ca href=\"http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2013/ucm376296.htm\">warning letter\u003c/a> saying the company was marketing genetic health analyses without approval, and raising concerns about the accuracy of the tests and the health risks to consumers of inaccurate tests.\u003c/p>\n\u003cp>A 23andMe \u003ca href=\"http://www.ispot.tv/ad/7qoF/23-and-me\">television commercial\u003c/a> at the time said people could discover if they “might have an increased risk of heart disease, arthritis, gallstones, [or] hemochromatosis.” 23andMe also gave people an analysis of genetic markers it said were associated with 254 specific diseases and conditions.\u003c/p>\n\u003cp>Concerned about “the public health consequences of inaccurate results,” the FDA asked company founder Anne Wojcicki to stop marketing the health analyses until the “diagnostic and prognostic capability of genomic information has been clinically validated.”\u003c/p>\n\u003cp>23andMe has \u003ca href=\"http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm391016.htm\">stopped marketing\u003c/a> the health analyses in the U.S., but is \u003ca href=\"http://blog.23andme.com/news/update-on-the-regulatory-review-process-with-the-fda/\">working with the FDA\u003c/a> to develop protocols that will allow the company to resume that part of its business.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>23andMe is expected to announce another ten partnerships with pharmaceutical companies over the next several weeks.\u003c/p>\n\n","blocks":[],"excerpt":"The Mountain View-based company will sell genetic information to Pfizer for a study into the genetic markers for lupus. ","status":"publish","parent":0,"modified":1704932410,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":14,"wordCount":483},"headData":{"title":"23andMe Strikes Another Deal With Big Pharma | KQED","description":"The Mountain View-based company will sell genetic information to Pfizer for a study into the genetic markers for lupus. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"23andMe Strikes Another Deal With Big Pharma","datePublished":"2015-01-13T02:30:09.000Z","dateModified":"2024-01-11T00:20:10.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"sticky":false,"path":"/science/26186/23andme-strikes-another-deal-with-big-pharma","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cfigure id=\"attachment_26269\" class=\"wp-caption alignleft\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2015/01/23andMe_Box-e1421263543823.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-26269 size-full\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2015/01/23andMe_Box-e1421263543823.jpg\" alt=\"\" width=\"640\" height=\"364\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">23andMe sells genetic testing kits and has recently started sharing that data with pharmaceutical companies. (23andMe)\u003c/figcaption>\u003c/figure>\n\u003cp>It hasn’t taken long for \u003ca href=\"https://www.23andme.com/\">23andMe\u003c/a>, the Mountain View-based genetics company, to strike another deal with big pharma.\u003c/p>\n\u003cp>Last week, the Google-backed firm announced a $60 million agreement to allow Genentech to use participant data to study Parkinson’s disease. A new agreement announced Monday will give Pfizer access to 5,000 people in the company’s database to study the genetics of lupus.\u003c/p>\n\u003cp>It could be a new way to come up with treatments, says Emily Drabant Conley, Director of Business Development.\u003c/p>\n\u003cp>“We’re quite hopeful that the information is being leveraged to move us toward therapies and cures,” Drabant Conley says.\u003c/p>\n\u003caside class=\"pullquote alignleft\">‘We’re quite hopeful that the information is being leveraged to move us toward therapies and cures.’\u003ccite>— Emily Drabant Conley,\u003cbr>\n23andMe Director of Business Development\u003c/cite>\u003c/aside>\n\u003cp>The biotech firm sells $99 personal DNA kits that, through one dab of saliva, can tell consumers about their genetic make-up and ancestry. It has enrolled more than 800,000 participants and 650,000 of those have consented to share their medical information.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“Not only are they benefiting by learning about themselves,” says Drabant Conley, “but when they consent to participate in research it gives us the ability to go back to them repeatedly over time and collect more info and engage them in the research that our partners are doing.”\u003c/p>\n\u003cp>Critics say the company is making millions by selling its users’ data. Concerns include privacy breaches and whether insurance companies would increase rates if they had access to a member’s genetic history.\u003c/p>\n\u003cp>23andMe came under attack in 2013 when the Food and Drug Administration issued a \u003ca href=\"http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2013/ucm376296.htm\">warning letter\u003c/a> saying the company was marketing genetic health analyses without approval, and raising concerns about the accuracy of the tests and the health risks to consumers of inaccurate tests.\u003c/p>\n\u003cp>A 23andMe \u003ca href=\"http://www.ispot.tv/ad/7qoF/23-and-me\">television commercial\u003c/a> at the time said people could discover if they “might have an increased risk of heart disease, arthritis, gallstones, [or] hemochromatosis.” 23andMe also gave people an analysis of genetic markers it said were associated with 254 specific diseases and conditions.\u003c/p>\n\u003cp>Concerned about “the public health consequences of inaccurate results,” the FDA asked company founder Anne Wojcicki to stop marketing the health analyses until the “diagnostic and prognostic capability of genomic information has been clinically validated.”\u003c/p>\n\u003cp>23andMe has \u003ca href=\"http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm391016.htm\">stopped marketing\u003c/a> the health analyses in the U.S., but is \u003ca href=\"http://blog.23andme.com/news/update-on-the-regulatory-review-process-with-the-fda/\">working with the FDA\u003c/a> to develop protocols that will allow the company to resume that part of its business.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>23andMe is expected to announce another ten partnerships with pharmaceutical companies over the next several weeks.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/science/26186/23andme-strikes-another-deal-with-big-pharma","authors":["5432"],"categories":["science_39","science_40"],"tags":["science_304","science_305","science_64","science_458","science_2203"],"featImg":"science_26269","label":"science"},"science_24813":{"type":"posts","id":"science_24813","meta":{"index":"posts_1591205157","site":"science","id":"24813","score":null,"sort":[1418652008000]},"guestAuthors":[],"slug":"getting-genetic-based-health-data-just-got-easier-in-canada-and-the-u-k","title":"Getting Genetic-Based Health Data Just Got Easier in Canada and the U.K.","publishDate":1418652008,"format":"aside","headTitle":"Getting Genetic-Based Health Data Just Got Easier in Canada and the U.K. | KQED","labelTerm":{"site":"science"},"content":"\u003cfigure id=\"attachment_24815\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/12/BritishFlafFamily.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-24815\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/12/BritishFlafFamily.jpg\" alt=\"Because she lives in the U.K., she can learn about some of her health risks from her 23andMe genetic test. If she lived in the U.S. she could not. (Wikimedia Commons)\" width=\"800\" height=\"501\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Because she lives in the U.K., she can learn about some of her health risks from her 23andMe genetic test. If she lived in the U.S. she could not. (\u003ca class=\"nofancybox\" href=\"http://commons.wikimedia.org/wiki/File:British_working_class.jpg\">Wikimedia Commons\u003c/a>)\u003c/figcaption>\u003c/figure>\n\u003cp>Here in the U.S., if you want to get health information from your direct-to-consumer (DTC) genetic test, you need \u003ca href=\"http://ww2.kqed.org/science/2014/06/30/you-can-transform-your-genetic-ancestry-data-into-health-info-but-your-results-may-vary/\">to use an online resource like Promethease\u003c/a>. The same is no longer true in Canada and the U.K. Their regulatory authorities have given the genetic testing company \u003ca href=\"https://www.23andme.com/\">23andMe\u003c/a> the green light to start offering them health-based results like they used to for American consumers.\u003c/p>\n\u003cp>Back in 2013, \u003ca href=\"http://ww2.kqed.org/science/2013/12/09/consumer-genetic-testing-company-23andme-faces-its-own-test-from-the-fda/\">the FDA ruled that 23andMe could no longer provide health information\u003c/a> as part of their services. What this meant was that U.S. customers could only use the results from the million or so simultaneous genetic tests 23andMe runs to find close relatives and to better understand their family’s ancestry.\u003c/p>\n\u003cp>A big reason why the FDA forbade 23andMe from releasing health data was that they felt that 23andMe was overselling their product. And for some health issues, they were probably right.\u003c/p>\n\u003cp>It looks like 23andMe got approval in the U.K. and Canada by only reporting on the subset of genetic conditions and traits that had a solid, well-understood genetic foundation. This is why they offer the results for just over 100 genetic conditions and traits in these two countries instead of the 260 or so that were offered in the U.S. 23andMe also stresses more obviously that their test is for informational and not diagnostic purposes. These two changes seem to have put them back onto the path of acceptability for regulatory agencies in the U.K. and Canada.\u003c/p>\n\u003cfigure id=\"attachment_24838\" class=\"wp-caption alignleft\" style=\"max-width: 300px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/12/Cake.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-24838\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/12/Cake.jpg\" alt=\"If the results were organized differently, DTC genetic test customers might get to have their cake and eat it too. (Flickr)\" width=\"300\" height=\"281\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">If the results were organized differently, DTC genetic test customers might get to have their cake and eat it too. (\u003ca href=\"https://c1.staticflickr.com/3/2380/2416470297_cfbb6c0fa7_z.jpg?zz=1\">Flickr\u003c/a>)\u003c/figcaption>\u003c/figure>\n\u003cp>If 23andMe had offered only this subset of tests when they started out, there might have been less blowback from the FDA. They might still be offering important health information to their customers in the U.S.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Of course, hindsight is 20/20. 23andMe was (is) a pioneer in the field and is still at the forefront of DTC genetic testing. They had no roadmap for what they were doing which means there were going to be bumps along the way. If the new services are anything to go by, it looks like they are learning from their mistakes.\u003c/p>\n\u003cp>But one concern is that they may be learning the wrong lesson. It may be that presenting all of their original findings differently could be just as safe as the stripped down version and provide additional information. Customers could have had their solid information and their more ephemeral information too.\u003c/p>\n\u003cp>\u003cstrong>The Plusses and Minuses of the New Information\u003c/strong>\u003c/p>\n\u003cp>As I said, 23andMe probably oversold what they offered in the U.S. But by preventing any health information at all from being released, the FDA threw the baby out with the bath water.\u003c/p>\n\u003cp>There was a lot of good, solid information in these tests that could really help people in their day to day lives. This is the information now available to people in the U.K. and Canada but not in the U.S.\u003c/p>\n\u003cp>For example, without DTC genetic tests, it can be a real pain to figure out if you are a carrier for a disease like cystic fibrosis or hemochromatosis. At the very least you need a doctor’s appointment and for many of the more rare diseases, you probably need a family history to justify the test. Either that or you will probably have to pay the high out of pocket expense.\u003c/p>\n\u003cp>It is much easier with one of these DTC tests. You just spend $99, spit in a vial, and wait for your results.\u003c/p>\n\u003cp>This kind of information can be very helpful for couples considering having children. If the test shows that both parents are carriers for one of these recessive diseases, then each of their kids would have a 1 in 4 chance of ending up with the disease. Even if the odds are against this, it is still definitely important information to have!\u003c/p>\n\u003cfigure id=\"attachment_24829\" class=\"wp-caption alignright\" style=\"max-width: 350px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/12/DNAmutation.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-24829\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/12/DNAmutation.jpg\" alt=\"Customers in Canada and the U.K. can learn about DNA differences that affect their and their future children's health risks. (palikam)\" width=\"350\" height=\"280\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Customers in Canada and the U.K. can learn about DNA differences that affect their and their future children’s health risks. (\u003ca href=\"http://fc04.deviantart.net/fs29/f/2008/101/0/3/DNA_Mutation_by_palikam.jpg\">palikam\u003c/a>)\u003c/figcaption>\u003c/figure>\n\u003cp>This is just one example of the kind of test that can give results you can use. They can also give you important information about your risks for diseases like breast cancer (think Angelina Jolie) and help doctors get your prescription dosage right, just to name a couple. These are no longer easily obtainable by U.S. customers.\u003c/p>\n\u003cp>Of course, a DTC test is not necessarily equivalent to the one you get from a doctor. Often (but not always) the doctor’s test comes with explanations that can help someone decide whether the result matters, whether more testing is warranted and so on. And of course the DTC test needs to be reliable for it to be meaningful.\u003c/p>\n\u003cp>This is the other point the FDA made in their ruling. They need for each of the hundreds of health-based tests that 23andMe offers to be solid enough for customers to make an informed decision based on the results. It is obviously critical that this be true for people to make important decisions based on the data and the FDA should make sure the tests are reliable.\u003c/p>\n\u003cp>What the new information available to customers in Canada and the U.K. is lacking are the more speculative findings. Which is too bad.\u003c/p>\n\u003cp>It is kind of fun to be at the forefront of the genetic revolution using your own data. I like seeing what the most recent research has to say about something like Type 2 diabetes (which runs in my family) and getting it written up for me in terms of my genetic information is a fun way to learn. And this works for me because as a geneticist, I know that any genetic results for Type 2 diabetes being offered right now aren’t really worth much.\u003c/p>\n\u003cp>Which is why companies like 23andMe should probably have flagged these sorts of results as speculative from the get go. Don’t put them in the same list as the 100 or so conditions that are more definitive. Don’t use bar graphs to show a customer’s risk as that makes it seem more real than it is.\u003c/p>\n\u003cp>Conditions like Type 2 diabetes should be binned together in a section where the company comes out and says that these results don’t mean a lot because we are just starting to understand the genetic basis of these diseases. They would also need to mention that even a complete genetic understanding of any of these conditions wouldn’t be the whole picture since the environment plays a big role too.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>Reorganizing the information would give more value to the customer. They would get solid advice for some conditions like customers can now get in the U.K. and Canada and still get to find out where science is on the others. A win-win for customers, doctors and the FDA.\u003c/p>\n\n","blocks":[],"excerpt":"Here in the U.S., if you want to get health information from your direct-to-consumer (DTC) genetic test, you need to use an online resource like Promethease. The same is no longer true in Canada and the U.K. ","status":"publish","parent":0,"modified":1704932516,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":23,"wordCount":1218},"headData":{"title":"Getting Genetic-Based Health Data Just Got Easier in Canada and the U.K. | KQED","description":"Here in the U.S., if you want to get health information from your direct-to-consumer (DTC) genetic test, you need to use an online resource like Promethease. The same is no longer true in Canada and the U.K. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Getting Genetic-Based Health Data Just Got Easier in Canada and the U.K.","datePublished":"2014-12-15T14:00:08.000Z","dateModified":"2024-01-11T00:21:56.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"sticky":false,"path":"/science/24813/getting-genetic-based-health-data-just-got-easier-in-canada-and-the-u-k","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cfigure id=\"attachment_24815\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/12/BritishFlafFamily.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-24815\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/12/BritishFlafFamily.jpg\" alt=\"Because she lives in the U.K., she can learn about some of her health risks from her 23andMe genetic test. If she lived in the U.S. she could not. (Wikimedia Commons)\" width=\"800\" height=\"501\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Because she lives in the U.K., she can learn about some of her health risks from her 23andMe genetic test. If she lived in the U.S. she could not. (\u003ca class=\"nofancybox\" href=\"http://commons.wikimedia.org/wiki/File:British_working_class.jpg\">Wikimedia Commons\u003c/a>)\u003c/figcaption>\u003c/figure>\n\u003cp>Here in the U.S., if you want to get health information from your direct-to-consumer (DTC) genetic test, you need \u003ca href=\"http://ww2.kqed.org/science/2014/06/30/you-can-transform-your-genetic-ancestry-data-into-health-info-but-your-results-may-vary/\">to use an online resource like Promethease\u003c/a>. The same is no longer true in Canada and the U.K. Their regulatory authorities have given the genetic testing company \u003ca href=\"https://www.23andme.com/\">23andMe\u003c/a> the green light to start offering them health-based results like they used to for American consumers.\u003c/p>\n\u003cp>Back in 2013, \u003ca href=\"http://ww2.kqed.org/science/2013/12/09/consumer-genetic-testing-company-23andme-faces-its-own-test-from-the-fda/\">the FDA ruled that 23andMe could no longer provide health information\u003c/a> as part of their services. What this meant was that U.S. customers could only use the results from the million or so simultaneous genetic tests 23andMe runs to find close relatives and to better understand their family’s ancestry.\u003c/p>\n\u003cp>A big reason why the FDA forbade 23andMe from releasing health data was that they felt that 23andMe was overselling their product. And for some health issues, they were probably right.\u003c/p>\n\u003cp>It looks like 23andMe got approval in the U.K. and Canada by only reporting on the subset of genetic conditions and traits that had a solid, well-understood genetic foundation. This is why they offer the results for just over 100 genetic conditions and traits in these two countries instead of the 260 or so that were offered in the U.S. 23andMe also stresses more obviously that their test is for informational and not diagnostic purposes. These two changes seem to have put them back onto the path of acceptability for regulatory agencies in the U.K. and Canada.\u003c/p>\n\u003cfigure id=\"attachment_24838\" class=\"wp-caption alignleft\" style=\"max-width: 300px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/12/Cake.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-24838\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/12/Cake.jpg\" alt=\"If the results were organized differently, DTC genetic test customers might get to have their cake and eat it too. (Flickr)\" width=\"300\" height=\"281\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">If the results were organized differently, DTC genetic test customers might get to have their cake and eat it too. (\u003ca href=\"https://c1.staticflickr.com/3/2380/2416470297_cfbb6c0fa7_z.jpg?zz=1\">Flickr\u003c/a>)\u003c/figcaption>\u003c/figure>\n\u003cp>If 23andMe had offered only this subset of tests when they started out, there might have been less blowback from the FDA. They might still be offering important health information to their customers in the U.S.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Of course, hindsight is 20/20. 23andMe was (is) a pioneer in the field and is still at the forefront of DTC genetic testing. They had no roadmap for what they were doing which means there were going to be bumps along the way. If the new services are anything to go by, it looks like they are learning from their mistakes.\u003c/p>\n\u003cp>But one concern is that they may be learning the wrong lesson. It may be that presenting all of their original findings differently could be just as safe as the stripped down version and provide additional information. Customers could have had their solid information and their more ephemeral information too.\u003c/p>\n\u003cp>\u003cstrong>The Plusses and Minuses of the New Information\u003c/strong>\u003c/p>\n\u003cp>As I said, 23andMe probably oversold what they offered in the U.S. But by preventing any health information at all from being released, the FDA threw the baby out with the bath water.\u003c/p>\n\u003cp>There was a lot of good, solid information in these tests that could really help people in their day to day lives. This is the information now available to people in the U.K. and Canada but not in the U.S.\u003c/p>\n\u003cp>For example, without DTC genetic tests, it can be a real pain to figure out if you are a carrier for a disease like cystic fibrosis or hemochromatosis. At the very least you need a doctor’s appointment and for many of the more rare diseases, you probably need a family history to justify the test. Either that or you will probably have to pay the high out of pocket expense.\u003c/p>\n\u003cp>It is much easier with one of these DTC tests. You just spend $99, spit in a vial, and wait for your results.\u003c/p>\n\u003cp>This kind of information can be very helpful for couples considering having children. If the test shows that both parents are carriers for one of these recessive diseases, then each of their kids would have a 1 in 4 chance of ending up with the disease. Even if the odds are against this, it is still definitely important information to have!\u003c/p>\n\u003cfigure id=\"attachment_24829\" class=\"wp-caption alignright\" style=\"max-width: 350px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/12/DNAmutation.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-24829\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/12/DNAmutation.jpg\" alt=\"Customers in Canada and the U.K. can learn about DNA differences that affect their and their future children's health risks. (palikam)\" width=\"350\" height=\"280\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Customers in Canada and the U.K. can learn about DNA differences that affect their and their future children’s health risks. (\u003ca href=\"http://fc04.deviantart.net/fs29/f/2008/101/0/3/DNA_Mutation_by_palikam.jpg\">palikam\u003c/a>)\u003c/figcaption>\u003c/figure>\n\u003cp>This is just one example of the kind of test that can give results you can use. They can also give you important information about your risks for diseases like breast cancer (think Angelina Jolie) and help doctors get your prescription dosage right, just to name a couple. These are no longer easily obtainable by U.S. customers.\u003c/p>\n\u003cp>Of course, a DTC test is not necessarily equivalent to the one you get from a doctor. Often (but not always) the doctor’s test comes with explanations that can help someone decide whether the result matters, whether more testing is warranted and so on. And of course the DTC test needs to be reliable for it to be meaningful.\u003c/p>\n\u003cp>This is the other point the FDA made in their ruling. They need for each of the hundreds of health-based tests that 23andMe offers to be solid enough for customers to make an informed decision based on the results. It is obviously critical that this be true for people to make important decisions based on the data and the FDA should make sure the tests are reliable.\u003c/p>\n\u003cp>What the new information available to customers in Canada and the U.K. is lacking are the more speculative findings. Which is too bad.\u003c/p>\n\u003cp>It is kind of fun to be at the forefront of the genetic revolution using your own data. I like seeing what the most recent research has to say about something like Type 2 diabetes (which runs in my family) and getting it written up for me in terms of my genetic information is a fun way to learn. And this works for me because as a geneticist, I know that any genetic results for Type 2 diabetes being offered right now aren’t really worth much.\u003c/p>\n\u003cp>Which is why companies like 23andMe should probably have flagged these sorts of results as speculative from the get go. Don’t put them in the same list as the 100 or so conditions that are more definitive. Don’t use bar graphs to show a customer’s risk as that makes it seem more real than it is.\u003c/p>\n\u003cp>Conditions like Type 2 diabetes should be binned together in a section where the company comes out and says that these results don’t mean a lot because we are just starting to understand the genetic basis of these diseases. They would also need to mention that even a complete genetic understanding of any of these conditions wouldn’t be the whole picture since the environment plays a big role too.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Reorganizing the information would give more value to the customer. They would get solid advice for some conditions like customers can now get in the U.K. and Canada and still get to find out where science is on the others. A win-win for customers, doctors and the FDA.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/science/24813/getting-genetic-based-health-data-just-got-easier-in-canada-and-the-u-k","authors":["6177"],"categories":["science_30","science_39"],"tags":["science_304","science_5181"],"featImg":"science_24815","label":"science"},"science_21998":{"type":"posts","id":"science_21998","meta":{"index":"posts_1591205157","site":"science","id":"21998","score":null,"sort":[1411995642000]},"guestAuthors":[],"slug":"how-big-data-is-changing-medicine","title":"How Big Data Is Changing Medicine","publishDate":1411995642,"format":"aside","headTitle":"How Big Data Is Changing Medicine | KQED","labelTerm":{"site":"science"},"content":"\u003cdiv class=\"audio-wrap\">\n\u003ch2>Listen:\u003c/h2>\n\u003cp>http://www.kqed.org/.stream/anon/radio/science/2014/09/20140929science.mp3\u003c/p>\n\u003c/div>\n\u003cfigure id=\"attachment_22009\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/09/computer-servers.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-22009 size-full\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/09/computer-servers.jpg\" alt=\"computer servers\" width=\"640\" height=\"360\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">(Courtesy of \u003ca href=\"https://guillaumepaumier.com/\">Guillaume Paumier\u003c/a>)\u003c/figcaption>\u003c/figure>\n\u003cp>Here’s how science usually works: Come up with a question or a hypothesis. Develop an experiment to test it and create data. As any middle school student could tell you, it’s called the scientific method.\u003c/p>\n\u003cp>Now, some researchers and entrepreneurs in the Bay Area say that method is being upended, especially when it comes to medicine.\u003c/p>\n\u003cp>Consider what happened in the pediatric intensive care unit at Stanford’s Lucile Packard Children’s Hospital a few years ago.\u003c/p>\n\u003cp>In 2011, a young girl from Reno, Nevada, was flown by helicopter to the pediatric intensive care unit of the hospital.\u003c/p>\n\u003caside class=\"pullquote alignleft\">‘Giving the drug was risky. Not giving the drug was also risky.’\u003ccite>— Jennifer Frankovich, Lucile Packard Children’s Hospital\u003c/cite>\u003c/aside>\n\u003cp>“She was gravely ill. Her kidneys were shutting down,” recalls Jennifer Frankovich, at the time a young attending physician at the hospital.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The girl had been given morphine to dull her crushing abdominal pain. To Frankovich, the girl’s parents, who were from Mexico, looked like deer in the headlights.\u003c/p>\n\u003cp>“There were probably more doctors around her bed than they’d seen in their lives” she says. “I mean, the kidney doctor, the intensivist, the rheumatology team, the hematology team. There was a huge number of doctors around this poor girl’s bed.”\u003c/p>\n\u003cp>\u003cstrong>Weighing the Risks \u003c/strong>\u003c/p>\n\u003cp>Tests showed the girl had lupus, a disease in which the immune system goes rogue, attacking the body’s healthy tissues. Lupus can cause permanent kidney damage.\u003c/p>\n\u003cp>But Frankovich worried about something else, too. She’d seen kids like this before, and recalled that some of them also developed blood clots, which can travel to the heart or lungs and be deadly.\u003c/p>\n\u003cp>Blood clots can be prevented with an anti-coagulant, which keeps the blood flowing. But that, too, carries risks. A patient on blood thinners can have a stroke or bleed into an organ. Blood thinners can also complicate surgery.\u003c/p>\n\u003cp>Giving the drug was risky. Not giving the drug was also risky. Frankovich asked her colleagues: What should we do here?\u003c/p>\n\u003cp>“There wasn’t enough published literature to guide this decision,” Frankovich says. “[They said] the best route was to not do anything.”\u003c/p>\n\u003cp>Pediatric lupus is rare, which makes formal studies hard to come by. It would take years for a single institution to identify enough subjects to come up with a meaningful sample size.\u003c/p>\n\u003cp>And the question itself was fairly obscure. Whether or not pediatric lupus patients are at a high risk for developing blood clots is one of those matters that medical researchers haven’t gotten around to answering.\u003c/p>\n\u003cp>Frankovich needed data. And that is when she had her big idea.\u003c/p>\n\u003cfigure id=\"attachment_22096\" class=\"wp-caption aligncenter\" style=\"max-width: 1024px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/09/Big-data-2.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-22096\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/09/Big-data-2.jpg\" alt=\"(David Pierce/KQED)\" width=\"1024\" height=\"1391\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">(David Pierce/KQED)\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>An Unconventional Decision\u003c/strong>\u003c/p>\n\u003cp>Frankovich had been helping build a database of pediatric lupus patients who had been seen previously at the hospital. She had digitized the charts and made them searchable with key words.\u003c/p>\n\u003cp>This isn’t typical.\u003c/p>\n\u003cp>Like any chronic medical condition, lupus generates a staggering amount of paperwork. Doctors follow each patient for years, even a decade.\u003c/p>\n\u003cp>“Our pediatric lupus patients have enough records to fill boxes,” Frankovich says.\u003c/p>\n\u003cp>She says the accumulated records of every kid with lupus who has come through Packard Hospital would fill a large room.\u003c/p>\n\u003cp>But now, all that data was accessible with a keystroke.\u003c/p>\n\u003cp>By looking for patterns within those medical records, Frankovich realized, she would, in a sense, be doing the study no one else had gotten around to doing.\u003c/p>\n\u003cp>She could look at every pediatric lupus patient that had come through the hospital to see how many of them developed blood clots, and what the risk factors were.\u003c/p>\n\u003cp>Based on that, she could calculate whether the risks of a blood clot in her current patient justified the risks of prescribing an anti-coagulant.\u003c/p>\n\u003cp>So she ran the search and presented her findings to her colleagues.\u003c/p>\n\u003caside class=\"pullquote alignleft\">‘The scientific method itself is growing obsolete.’\u003ccite>— Atul Butte, Stanford School of Medicine\u003c/cite>\u003c/aside>\n\u003cp>“And universally everyone said, ‘wow, based on those numbers, it seems like we should try to prevent a clot in her,’” Frankovich says.\u003c/p>\n\u003cp>The patient was given the anti-coagulant. Over time her lupus got better. As far as Frankovich knows, she’s doing well.\u003c/p>\n\u003cp>It may not seem like it, but what Frankovich did was fairly radical, noteworthy enough to warrant a \u003ca href=\"http://bmi205.stanford.edu/_media/jfrankovich-1.pdf\">paper published \u003c/a>in November 2011 in the New England Journal of Medicine.\u003c/p>\n\u003cp>Traditionally, doctors make decisions based on two factors: One, their own expertise and that of other doctors and specialists. In other words, that team of doctors who were gathered around the young lupus patient’s bed.\u003c/p>\n\u003cp>Two, doctors consult the scientific literature. They read studies and case reports that have been published in established medical journals.\u003c/p>\n\u003cp>Frankovich was taking a third route. She was using electronic medical records to search for answers that were already out there, but hadn’t been uncovered yet.\u003c/p>\n\u003cp>\u003cstrong>A Seismic Shift in Medicine\u003c/strong>\u003c/p>\n\u003cp>It’s an example, says \u003ca href=\"https://buttelab.stanford.edu/\">Atul Butte\u003c/a>, an entrepreneur and associate professor of pediatrics at the Stanford School of Medicine, of a seismic shift happening in medicine.\u003c/p>\n\u003cp>“The idea here is, the scientific method itself is growing obsolete,” Butte says.\u003c/p>\n\u003cfigure id=\"attachment_22031\" class=\"wp-caption alignleft\" style=\"max-width: 409px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/09/Physician-ipad-1024x682.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\" wp-image-22031\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/09/Physician-ipad-1024x682.jpg\" alt=\"Healthcare providers increasingly use electronic medical records and other large data sets to understand patient responses to treatment over time. (NEC Corporation of America) \" width=\"409\" height=\"272\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Healthcare providers increasingly use electronic medical records and other large data sets to understand patient responses to treatment over time. (NEC Corporation of America)\u003c/figcaption>\u003c/figure>\n\u003cp>This concept draws from \u003ca href=\"http://archive.wired.com/science/discoveries/magazine/16-07/pb_theory\">an essay\u003c/a> published in Wired Magazine in 2008 called “The End of Theory.”\u003c/p>\n\u003cp>According to the essay, so much information will be available at our fingertips in the future that there will be almost no need for experiments. The answers are already out there.\u003c/p>\n\u003cp>“Think about it,” Butte says. “The scientific method — we learned this in elementary school — is: We come up with a question, a hypothesis, and go make measurements to answer it. Now we’re living in this world where we already have the measurements and the data. The struggle is to figure out: What do we want to ask of all that data?”\u003c/p>\n\u003cp>Take, for example, a question Butte’s team has focused on recently: the rise in pre-term births in the United States. One theory, says Butte, points to an increase in exposure to environmental toxins.\u003c/p>\n\u003cp>Traditionally, this would be a challenging hypothesis to study. Medical records for these births aren’t necessarily in any one place, online. The same problem exists with records on air pollution, or weather patterns.\u003c/p>\n\u003caside class=\"pullquote alignleft\">‘We’re heading to a world where we’ll have the genome sequence of everyone on planet Earth.’\u003ccite>— Atul Butte, Stanford School of Medicine\u003c/cite>\u003c/aside>\n\u003cp>But that’s changing.\u003c/p>\n\u003cp>Now, Butte says, “you can connect pre-term births from the medical records and birth census data to weather patterns, pollution monitors and EPA data to see is there a correlation there or not.”\u003c/p>\n\u003cp>Correlation does not mean causation (as any statistician will tell you) but it’s a good jumping-off point for more targeted research.\u003c/p>\n\u003cp>\u003cstrong>The Ever-Expanding Cloud of Information\u003c/strong>\u003c/p>\n\u003cp>Big data is more than medical records and environmental data, Butte says. It could (or already does) include the results of every clinical trial that’s ever been done, every lab test, Google search, tweet. The data from your Fitbit.\u003c/p>\n\u003cp>Eventually, the challenge won’t be finding the data, it’ll be figuring out how to organize it all.\u003cbr>\n“I think the computational side of this is, let’s try to connect everything to everything,” Butte says.\u003c/p>\n\u003cp>Perhaps the biggest pool of data will be the genetic instructions written in each one of our cells.\u003c/p>\n\u003cp>It took $2.7 billion and 13 years to sequence the first human genome. Today, that same project costs $1,500 and takes about a day.\u003c/p>\n\u003cp>“We’re heading to a world where we’re going to have the genome sequence of everyone on planet Earth,” Butte says.\u003c/p>\n\u003cfigure id=\"attachment_17192\" class=\"wp-caption alignleft\" style=\"max-width: 333px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/05/Wojcicki-216x162.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\" wp-image-17192\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/05/Wojcicki-216x162.jpg\" alt=\"23andMe CEO Anne Wojcicki, speaking at the annual SXSW festival in Austin, Texas in March 2014. (Jenny Oh/KQED)\" width=\"333\" height=\"250\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">23andMe CEO Anne Wojcicki, speaking at the annual SXSW festival in Austin, Texas in March 2014. (Jenny Oh/KQED)\u003c/figcaption>\u003c/figure>\n\u003cp>One of the world’s largest genetics databases belongs to the Mountain View-based company 23andMe.\u003c/p>\n\u003cp>CEO Anne Wojcicki says that huge pool of data is already providing answers.\u003c/p>\n\u003cp>Take for example, she says, a family that came to the company to learn more about three family members who had developed pancreatic cancer.\u003c/p>\n\u003cp>The family members also shared a specific gene mutation. They wanted to know: Is the mutation causing the cancer?\u003c/p>\n\u003cp>23andMe consulted its database of more than 500,000 partial genetic profiles. They found 157 people with the same mutation.\u003c/p>\n\u003cp>“What we saw,” Wojcicki says, “is that of those 157 people with that mutation, the majority said they don’t have the cancer, nor does anyone in their immediate family.”\u003c/p>\n\u003caside class=\"pullquote alignleft\">“We’re able to take the timeline down from years of research to a couple weeks.”\u003ccite>— Anne Wojcicki, 23andMe\u003c/cite>\u003c/aside>\n\u003cp>“So we were very quickly able to conclude, not with 100 percent certainty,” she says, “but with a high degree of certainty, that the mutation the family thought was causing pancreatic cancer was not causing the cancer.”\u003c/p>\n\u003cp>Normally, she says, this kind of question would require expensive research grants. Researchers would have to recruit subjects with and without the disease and then run genetic tests on all of them.\u003c/p>\n\u003cp>23andMe’s searchable database meant the answers were already there.\u003c/p>\n\u003cp>“We’re able to take the timeline down from years of research to a couple weeks,” Wojcicki says.\u003c/p>\n\u003cp>For 23andMe, big data is a business model. The company anonymizes its genetics information and sells it to researchers who want to study the genetic basis for Parkinson’s disease or diabetes, for example.\u003c/p>\n\u003cp>It recently \u003ca href=\"https://www.23andme.com/ibd/\">teamed up\u003c/a> with Pfizer on a project to research inflammatory bowel syndrome. In July, the company announced a $1.37 million \u003ca href=\"http://mediacenter.23andme.com/press-releases/nih_grant_2014/\">grant\u003c/a> from the National Institutes of Health to develop its database and research engine.\u003c/p>\n\u003cp>This work raises questions about privacy, and about who gets access to this data.\u003c/p>\n\u003cp>\u003cstrong>What’s Safer? Data Or a Team of Doctors?\u003c/strong>\u003c/p>\n\u003cp>And when medicine meets big data there are always questions about safety.\u003c/p>\n\u003cp>Remember Dr. Frankovich and the lupus patient?\u003c/p>\n\u003cp>Given the success of that experiment, you might think what she did is now standard at the hospital where she works. In fact, it’s the opposite.\u003c/p>\n\u003cp>“We’re actually not doing that anymore, says Frankovich.\u003c/p>\n\u003cp>In the end, hospital administrators decided — at least in urgent cases where time is short — that it is still safer to trust the wisdom of a team of doctors than to search medical records for data about what’s worked in the past.\u003c/p>\n\u003cp>Frankovich agrees. Analyzing data is complicated and requires specific expertise. What if the search engine has bugs, or the records are transcribed incorrectly? There’s just too much room for error, she says.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>“It’s going to take a system to interpret the data,” she says. “And that’s what we don’t have yet. We don’t have that system. We will, I mean for sure, the data is there, right? Now we have to develop the system to use it in a thoughtful, safe way.”\u003c/p>\n\n","blocks":[],"excerpt":"Used to be that medical researchers came up with a theory, recruited subjects, and gathered data, sometimes for years. Now, the answers are already there in data collections on the cloud. All researchers need is the right question.","status":"publish","parent":0,"modified":1704932864,"stats":{"hasAudio":true,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":73,"wordCount":1956},"headData":{"title":"How Big Data Is Changing Medicine | KQED","description":"Used to be that medical researchers came up with a theory, recruited subjects, and gathered data, sometimes for years. Now, the answers are already there in data collections on the cloud. All researchers need is the right question.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"How Big Data Is Changing Medicine","datePublished":"2014-09-29T13:00:42.000Z","dateModified":"2024-01-11T00:27:44.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"audioUrl":"http://www.kqed.org/.stream/anon/radio/science/2014/09/20140929science.mp3","sticky":false,"path":"/science/21998/how-big-data-is-changing-medicine","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cdiv class=\"audio-wrap\">\n\u003ch2>Listen:\u003c/h2>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"audioLink","attributes":{"named":{"src":"http://www.kqed.org/.stream/anon/radio/science/2014/09/20140929science.mp3"},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/div>\n\u003cfigure id=\"attachment_22009\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/09/computer-servers.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-22009 size-full\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/09/computer-servers.jpg\" alt=\"computer servers\" width=\"640\" height=\"360\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">(Courtesy of \u003ca href=\"https://guillaumepaumier.com/\">Guillaume Paumier\u003c/a>)\u003c/figcaption>\u003c/figure>\n\u003cp>Here’s how science usually works: Come up with a question or a hypothesis. Develop an experiment to test it and create data. As any middle school student could tell you, it’s called the scientific method.\u003c/p>\n\u003cp>Now, some researchers and entrepreneurs in the Bay Area say that method is being upended, especially when it comes to medicine.\u003c/p>\n\u003cp>Consider what happened in the pediatric intensive care unit at Stanford’s Lucile Packard Children’s Hospital a few years ago.\u003c/p>\n\u003cp>In 2011, a young girl from Reno, Nevada, was flown by helicopter to the pediatric intensive care unit of the hospital.\u003c/p>\n\u003caside class=\"pullquote alignleft\">‘Giving the drug was risky. Not giving the drug was also risky.’\u003ccite>— Jennifer Frankovich, Lucile Packard Children’s Hospital\u003c/cite>\u003c/aside>\n\u003cp>“She was gravely ill. Her kidneys were shutting down,” recalls Jennifer Frankovich, at the time a young attending physician at the hospital.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The girl had been given morphine to dull her crushing abdominal pain. To Frankovich, the girl’s parents, who were from Mexico, looked like deer in the headlights.\u003c/p>\n\u003cp>“There were probably more doctors around her bed than they’d seen in their lives” she says. “I mean, the kidney doctor, the intensivist, the rheumatology team, the hematology team. There was a huge number of doctors around this poor girl’s bed.”\u003c/p>\n\u003cp>\u003cstrong>Weighing the Risks \u003c/strong>\u003c/p>\n\u003cp>Tests showed the girl had lupus, a disease in which the immune system goes rogue, attacking the body’s healthy tissues. Lupus can cause permanent kidney damage.\u003c/p>\n\u003cp>But Frankovich worried about something else, too. She’d seen kids like this before, and recalled that some of them also developed blood clots, which can travel to the heart or lungs and be deadly.\u003c/p>\n\u003cp>Blood clots can be prevented with an anti-coagulant, which keeps the blood flowing. But that, too, carries risks. A patient on blood thinners can have a stroke or bleed into an organ. Blood thinners can also complicate surgery.\u003c/p>\n\u003cp>Giving the drug was risky. Not giving the drug was also risky. Frankovich asked her colleagues: What should we do here?\u003c/p>\n\u003cp>“There wasn’t enough published literature to guide this decision,” Frankovich says. “[They said] the best route was to not do anything.”\u003c/p>\n\u003cp>Pediatric lupus is rare, which makes formal studies hard to come by. It would take years for a single institution to identify enough subjects to come up with a meaningful sample size.\u003c/p>\n\u003cp>And the question itself was fairly obscure. Whether or not pediatric lupus patients are at a high risk for developing blood clots is one of those matters that medical researchers haven’t gotten around to answering.\u003c/p>\n\u003cp>Frankovich needed data. And that is when she had her big idea.\u003c/p>\n\u003cfigure id=\"attachment_22096\" class=\"wp-caption aligncenter\" style=\"max-width: 1024px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/09/Big-data-2.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-22096\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/09/Big-data-2.jpg\" alt=\"(David Pierce/KQED)\" width=\"1024\" height=\"1391\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">(David Pierce/KQED)\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>An Unconventional Decision\u003c/strong>\u003c/p>\n\u003cp>Frankovich had been helping build a database of pediatric lupus patients who had been seen previously at the hospital. She had digitized the charts and made them searchable with key words.\u003c/p>\n\u003cp>This isn’t typical.\u003c/p>\n\u003cp>Like any chronic medical condition, lupus generates a staggering amount of paperwork. Doctors follow each patient for years, even a decade.\u003c/p>\n\u003cp>“Our pediatric lupus patients have enough records to fill boxes,” Frankovich says.\u003c/p>\n\u003cp>She says the accumulated records of every kid with lupus who has come through Packard Hospital would fill a large room.\u003c/p>\n\u003cp>But now, all that data was accessible with a keystroke.\u003c/p>\n\u003cp>By looking for patterns within those medical records, Frankovich realized, she would, in a sense, be doing the study no one else had gotten around to doing.\u003c/p>\n\u003cp>She could look at every pediatric lupus patient that had come through the hospital to see how many of them developed blood clots, and what the risk factors were.\u003c/p>\n\u003cp>Based on that, she could calculate whether the risks of a blood clot in her current patient justified the risks of prescribing an anti-coagulant.\u003c/p>\n\u003cp>So she ran the search and presented her findings to her colleagues.\u003c/p>\n\u003caside class=\"pullquote alignleft\">‘The scientific method itself is growing obsolete.’\u003ccite>— Atul Butte, Stanford School of Medicine\u003c/cite>\u003c/aside>\n\u003cp>“And universally everyone said, ‘wow, based on those numbers, it seems like we should try to prevent a clot in her,’” Frankovich says.\u003c/p>\n\u003cp>The patient was given the anti-coagulant. Over time her lupus got better. As far as Frankovich knows, she’s doing well.\u003c/p>\n\u003cp>It may not seem like it, but what Frankovich did was fairly radical, noteworthy enough to warrant a \u003ca href=\"http://bmi205.stanford.edu/_media/jfrankovich-1.pdf\">paper published \u003c/a>in November 2011 in the New England Journal of Medicine.\u003c/p>\n\u003cp>Traditionally, doctors make decisions based on two factors: One, their own expertise and that of other doctors and specialists. In other words, that team of doctors who were gathered around the young lupus patient’s bed.\u003c/p>\n\u003cp>Two, doctors consult the scientific literature. They read studies and case reports that have been published in established medical journals.\u003c/p>\n\u003cp>Frankovich was taking a third route. She was using electronic medical records to search for answers that were already out there, but hadn’t been uncovered yet.\u003c/p>\n\u003cp>\u003cstrong>A Seismic Shift in Medicine\u003c/strong>\u003c/p>\n\u003cp>It’s an example, says \u003ca href=\"https://buttelab.stanford.edu/\">Atul Butte\u003c/a>, an entrepreneur and associate professor of pediatrics at the Stanford School of Medicine, of a seismic shift happening in medicine.\u003c/p>\n\u003cp>“The idea here is, the scientific method itself is growing obsolete,” Butte says.\u003c/p>\n\u003cfigure id=\"attachment_22031\" class=\"wp-caption alignleft\" style=\"max-width: 409px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/09/Physician-ipad-1024x682.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\" wp-image-22031\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/09/Physician-ipad-1024x682.jpg\" alt=\"Healthcare providers increasingly use electronic medical records and other large data sets to understand patient responses to treatment over time. (NEC Corporation of America) \" width=\"409\" height=\"272\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Healthcare providers increasingly use electronic medical records and other large data sets to understand patient responses to treatment over time. (NEC Corporation of America)\u003c/figcaption>\u003c/figure>\n\u003cp>This concept draws from \u003ca href=\"http://archive.wired.com/science/discoveries/magazine/16-07/pb_theory\">an essay\u003c/a> published in Wired Magazine in 2008 called “The End of Theory.”\u003c/p>\n\u003cp>According to the essay, so much information will be available at our fingertips in the future that there will be almost no need for experiments. The answers are already out there.\u003c/p>\n\u003cp>“Think about it,” Butte says. “The scientific method — we learned this in elementary school — is: We come up with a question, a hypothesis, and go make measurements to answer it. Now we’re living in this world where we already have the measurements and the data. The struggle is to figure out: What do we want to ask of all that data?”\u003c/p>\n\u003cp>Take, for example, a question Butte’s team has focused on recently: the rise in pre-term births in the United States. One theory, says Butte, points to an increase in exposure to environmental toxins.\u003c/p>\n\u003cp>Traditionally, this would be a challenging hypothesis to study. Medical records for these births aren’t necessarily in any one place, online. The same problem exists with records on air pollution, or weather patterns.\u003c/p>\n\u003caside class=\"pullquote alignleft\">‘We’re heading to a world where we’ll have the genome sequence of everyone on planet Earth.’\u003ccite>— Atul Butte, Stanford School of Medicine\u003c/cite>\u003c/aside>\n\u003cp>But that’s changing.\u003c/p>\n\u003cp>Now, Butte says, “you can connect pre-term births from the medical records and birth census data to weather patterns, pollution monitors and EPA data to see is there a correlation there or not.”\u003c/p>\n\u003cp>Correlation does not mean causation (as any statistician will tell you) but it’s a good jumping-off point for more targeted research.\u003c/p>\n\u003cp>\u003cstrong>The Ever-Expanding Cloud of Information\u003c/strong>\u003c/p>\n\u003cp>Big data is more than medical records and environmental data, Butte says. It could (or already does) include the results of every clinical trial that’s ever been done, every lab test, Google search, tweet. The data from your Fitbit.\u003c/p>\n\u003cp>Eventually, the challenge won’t be finding the data, it’ll be figuring out how to organize it all.\u003cbr>\n“I think the computational side of this is, let’s try to connect everything to everything,” Butte says.\u003c/p>\n\u003cp>Perhaps the biggest pool of data will be the genetic instructions written in each one of our cells.\u003c/p>\n\u003cp>It took $2.7 billion and 13 years to sequence the first human genome. Today, that same project costs $1,500 and takes about a day.\u003c/p>\n\u003cp>“We’re heading to a world where we’re going to have the genome sequence of everyone on planet Earth,” Butte says.\u003c/p>\n\u003cfigure id=\"attachment_17192\" class=\"wp-caption alignleft\" style=\"max-width: 333px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/05/Wojcicki-216x162.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\" wp-image-17192\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/05/Wojcicki-216x162.jpg\" alt=\"23andMe CEO Anne Wojcicki, speaking at the annual SXSW festival in Austin, Texas in March 2014. (Jenny Oh/KQED)\" width=\"333\" height=\"250\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">23andMe CEO Anne Wojcicki, speaking at the annual SXSW festival in Austin, Texas in March 2014. (Jenny Oh/KQED)\u003c/figcaption>\u003c/figure>\n\u003cp>One of the world’s largest genetics databases belongs to the Mountain View-based company 23andMe.\u003c/p>\n\u003cp>CEO Anne Wojcicki says that huge pool of data is already providing answers.\u003c/p>\n\u003cp>Take for example, she says, a family that came to the company to learn more about three family members who had developed pancreatic cancer.\u003c/p>\n\u003cp>The family members also shared a specific gene mutation. They wanted to know: Is the mutation causing the cancer?\u003c/p>\n\u003cp>23andMe consulted its database of more than 500,000 partial genetic profiles. They found 157 people with the same mutation.\u003c/p>\n\u003cp>“What we saw,” Wojcicki says, “is that of those 157 people with that mutation, the majority said they don’t have the cancer, nor does anyone in their immediate family.”\u003c/p>\n\u003caside class=\"pullquote alignleft\">“We’re able to take the timeline down from years of research to a couple weeks.”\u003ccite>— Anne Wojcicki, 23andMe\u003c/cite>\u003c/aside>\n\u003cp>“So we were very quickly able to conclude, not with 100 percent certainty,” she says, “but with a high degree of certainty, that the mutation the family thought was causing pancreatic cancer was not causing the cancer.”\u003c/p>\n\u003cp>Normally, she says, this kind of question would require expensive research grants. Researchers would have to recruit subjects with and without the disease and then run genetic tests on all of them.\u003c/p>\n\u003cp>23andMe’s searchable database meant the answers were already there.\u003c/p>\n\u003cp>“We’re able to take the timeline down from years of research to a couple weeks,” Wojcicki says.\u003c/p>\n\u003cp>For 23andMe, big data is a business model. The company anonymizes its genetics information and sells it to researchers who want to study the genetic basis for Parkinson’s disease or diabetes, for example.\u003c/p>\n\u003cp>It recently \u003ca href=\"https://www.23andme.com/ibd/\">teamed up\u003c/a> with Pfizer on a project to research inflammatory bowel syndrome. In July, the company announced a $1.37 million \u003ca href=\"http://mediacenter.23andme.com/press-releases/nih_grant_2014/\">grant\u003c/a> from the National Institutes of Health to develop its database and research engine.\u003c/p>\n\u003cp>This work raises questions about privacy, and about who gets access to this data.\u003c/p>\n\u003cp>\u003cstrong>What’s Safer? Data Or a Team of Doctors?\u003c/strong>\u003c/p>\n\u003cp>And when medicine meets big data there are always questions about safety.\u003c/p>\n\u003cp>Remember Dr. Frankovich and the lupus patient?\u003c/p>\n\u003cp>Given the success of that experiment, you might think what she did is now standard at the hospital where she works. In fact, it’s the opposite.\u003c/p>\n\u003cp>“We’re actually not doing that anymore, says Frankovich.\u003c/p>\n\u003cp>In the end, hospital administrators decided — at least in urgent cases where time is short — that it is still safer to trust the wisdom of a team of doctors than to search medical records for data about what’s worked in the past.\u003c/p>\n\u003cp>Frankovich agrees. Analyzing data is complicated and requires specific expertise. What if the search engine has bugs, or the records are transcribed incorrectly? There’s just too much room for error, she says.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“It’s going to take a system to interpret the data,” she says. “And that’s what we don’t have yet. We don’t have that system. We will, I mean for sure, the data is there, right? Now we have to develop the system to use it in a thoughtful, safe way.”\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/science/21998/how-big-data-is-changing-medicine","authors":["210"],"categories":["science_39","science_40","science_43"],"tags":["science_304","science_64"],"featImg":"science_22009","label":"science"},"science_17133":{"type":"posts","id":"science_17133","meta":{"index":"posts_1591205157","site":"science","id":"17133","score":null,"sort":[1399296641000]},"guestAuthors":[],"slug":"consumer-gene-tests-whats-the-future","title":"Consumer Gene Tests Face Uncertain Future","publishDate":1399296641,"format":"aside","headTitle":"Consumer Gene Tests Face Uncertain Future | KQED","labelTerm":{"site":"science"},"content":"\u003cdiv class=\"audio-wrap\">\n\u003ch2>Listen:\u003c/h2>\n\u003cp>http://www.kqed.org/.stream/anon/radio/science/2014/05/20140505science.mp3\u003c/p>\n\u003c/div>\n\u003cfigure id=\"attachment_17201\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-17201\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/05/DNA-2.jpg\" alt=\"A magnified strand of DNA. (Credit: Tomasz Wyszomirski)\" width=\"640\" height=\"360\">\u003cfigcaption class=\"wp-caption-text\">A magnified strand of DNA. (Tomasz Wyszomirski)\u003c/figcaption>\u003c/figure>\n\u003cp>Consumers who want to find out about their genetic health risks without going to the doctor and paying a hefty price may have to wait. For a while, personal genetic tests were becoming more affordable and informative. But the industry took a blow last year when the government cracked down on Mountain View company \u003ca href=\"https://www.23andme.com/\">23andMe\u003c/a>.\u003c/p>\n\u003cp>That was the last consumer gene testing company still offering health information after two years of federal efforts to regulate the industry. Unlike other companies, many of which folded or sold, 23andMe is working with regulators to come back to the consumer genetic health market.\u003c/p>\n\u003cp>\u003cstrong>A Passion for Consumer Genetics\u003c/strong>\u003c/p>\n\u003cp>On a recent Thursday evening at the \u003ca href=\"http://www.calacademy.org/\">California Academy of Sciences\u003c/a> in San Francisco, the star of the show was not the giant T-Rex skeleton in the lobby but a small-framed, energetic Silicon Valley entrepreneur speaking about personal genetics.\u003c/p>\n\u003caside class=\"pullquote alignleft\">‘One of the main things people think about when they think of their genetic information, is that they want the health interpretation.’\u003c/aside>\n\u003cp>“I want to ask this audience, how many people have ever had a genetic test?” said \u003ca href=\"https://www.23andme.com/about/board/\">Anne Wojcicki\u003c/a>, CEO of 23andMe.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Of about 150 people in the audience, some 30 people raised their hands.\u003c/p>\n\u003cp>“So my goal is in the next ten years that every single one of you would raise your hand,” Wojcicki said.\u003c/p>\n\u003cp>Wojcicki said since 2007, more than half a million customers have sent in a saliva sample and gotten information that included their risks for developing cardiac disease and breast cancer, as well genetic traits such as how fast they metabolize caffeine. But last November the FDA ordered 23andMe to stop sales of its $99 tests.\u003c/p>\n\u003cp>\u003cstrong>FDA to 23andMe: Stop Selling Gene Tests\u003c/strong>\u003c/p>\n\u003cp>\u003ca href=\"http://www.fda.gov/newsevents/testimony/ucm219925.htm\">The FDA said\u003c/a>, in a very public letter, that the company’s test kit was a medical device that needed to be regulated and that 23andMe failed to prove it was interpreting health results accurately.\u003c/p>\n\u003cfigure id=\"attachment_17192\" class=\"wp-caption alignleft\" style=\"max-width: 252px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-17192\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/05/Wojcicki-216x162.jpg\" alt=\"23andMe CEO Anne Wojcicki, speaking at the annual SXSW festival in Austin, Texas in March 2014. (Jenny Oh/KQED)\" width=\"252\" height=\"189\">\u003cfigcaption class=\"wp-caption-text\">23andMe CEO Anne Wojcicki, speaking at the annual SXSW festival in Austin, Texas in March 2014. (Jenny Oh/KQED)\u003c/figcaption>\u003c/figure>\n\u003cp>Wojcicki said the ruling has hit her company hard. “As a result, we have had to stop offering our healthcare service, and it’s had a significant impact because it’s one of the main things people think about when they think of their genetic information, is that they want the health interpretation.”\u003c/p>\n\u003cp>So now, 23andMe is working with the FDA in an effort to once again be able to offer health information. Meanwhile, the company can still provide ancestry information, which is already a crowded field.\u003c/p>\n\u003cp>Hank Greely directs the \u003ca href=\"https://www.law.stanford.edu/organizations/programs-and-centers/center-for-law-and-the-biosciences\">Center for Law and the Biosciences\u003c/a> at Stanford. He said dwindling sales will impact the company’s efforts to build a sizable research database—and that’s important to its business strategy.\u003c/p>\n\u003cp>“For those customers who agree to it by signing a somewhat opaque consent form,” Greely said, “they can sell that information to pharma and bio, but without lots of new customers coming in that service becomes less attractive to pharma and biotech.”\u003c/p>\n\u003cp>Some have criticized 23andme for considering selling anonymized data. But Wojcicki is unapologetic.\u003c/p>\n\u003cp>“23andMe partners with those companies because those are the people who are making therapies,” she said. “And if we want to get better therapies for breast cancer, and you want to get better therapies for asthma and migraines and all kinds of the other conditions that impact our lives, we have to work with pharma companies.”\u003cbr>\n\u003cstrong>\u003cbr>\nBig Data May Lead to Medical Breakthroughs\u003c/strong>\u003c/p>\n\u003cp>And here’s where consumer genetics isn’t just about the consumer. All that genetic information, or big data, can be used to run studies in search of medical breakthroughs. That means any company that wants to stay at the forefront has to keep up with the changing science.\u003c/p>\n\u003caside class=\"pullquote alignleft\">‘We know that the world has been quite focused on getting the so-called thousand-dollar genome.’\u003c/aside>\n\u003cp>In your human genome you have an entire set of 23 human chromosomes, made up of, among other things, DNA building blocks called base pairs. The human genome is composed of 3 billion base pairs.\u003c/p>\n\u003cp>Right now consumer gene tests take tiny snips of less than a million base pairs to look at one person’s unique genetic blueprint. Each of these unique variations is called a snp (yep, pronounced “snip”), for “single nucleotide polymorphism.”\u003c/p>\n\u003cp>\u003cstrong>The Future Lies in Sequencing the Whole Genome\u003c/strong>\u003c/p>\n\u003cp>But a snp is just a fraction of the entire genome. Scientists say the key to the future of genetics lies in sequencing the whole genome.\u003c/p>\n\u003cp>“We know that the world has been quite focused on getting the so-called thousand-dollar genome,” said Vance Vanier, vice president of reproductive and genetic health at San Diego-based \u003ca href=\"http://www.illumina.com/\">Illumina\u003c/a>. The company has just unveiled a system it claims can sequence a human genome for $1,000. That’s a big drop from the nearly $3 billion dollar price tag to sequence the first genome in 2003.\u003c/p>\n\u003cp>“I think the story of the next five years is to see that affordability spread more and more to broader segments of society and to clinical laboratories specifically,” said Vanier, who was CEO of an early consumer gene testing company called Navigenics.\u003c/p>\n\u003cp>And while he believes genetic testing will continue to be done primarily through medical professionals, he said he still sees a place for consumer gene tests. After all, Vanier said, there was a time home pregnancy tests had to be done in a doctor’s office. Now people can even buy over-the-counter HIV tests.\u003c/p>\n\u003cp>“I think the pattern you see,” Vanier said, “is as information gets better understood and as there are more social safeguards around it to protect from a misuse of it, then there is increasing comfort of how it can evolve into the consumer market.”\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>And so the debate continues between those that believe accessing your DNA has become a basic right and those who believe gene tests are better left to a doctor.\u003cbr>\n\u003cem>\u003cbr>\nSince this story published, 23andMe officials confirm they \u003ca href=\"http://www.reuters.com/article/2014/05/06/23andme-genetictesting-idUSL2N0NS0Y820140506?feedType=RSS\">are considering selling their gene tests in markets outside the U.S.\u003c/a> after facing hurdles with the FDA.\u003c/em>\u003c/p>\n\n","blocks":[],"excerpt":"Personal genetics companies that offer health insights are working to satisfy federal regulators and keep up with changing science.","status":"publish","parent":0,"modified":1704933731,"stats":{"hasAudio":true,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":28,"wordCount":1086},"headData":{"title":"Consumer Gene Tests Face Uncertain Future | KQED","description":"Personal genetics companies that offer health insights are working to satisfy federal regulators and keep up with changing science.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Consumer Gene Tests Face Uncertain Future","datePublished":"2014-05-05T13:30:41.000Z","dateModified":"2024-01-11T00:42:11.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"audioUrl":"http://www.kqed.org/.stream/anon/radio/science/2014/05/20140505science.mp3","sticky":false,"path":"/science/17133/consumer-gene-tests-whats-the-future","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cdiv class=\"audio-wrap\">\n\u003ch2>Listen:\u003c/h2>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"audioLink","attributes":{"named":{"src":"http://www.kqed.org/.stream/anon/radio/science/2014/05/20140505science.mp3"},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/div>\n\u003cfigure id=\"attachment_17201\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-17201\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/05/DNA-2.jpg\" alt=\"A magnified strand of DNA. (Credit: Tomasz Wyszomirski)\" width=\"640\" height=\"360\">\u003cfigcaption class=\"wp-caption-text\">A magnified strand of DNA. (Tomasz Wyszomirski)\u003c/figcaption>\u003c/figure>\n\u003cp>Consumers who want to find out about their genetic health risks without going to the doctor and paying a hefty price may have to wait. For a while, personal genetic tests were becoming more affordable and informative. But the industry took a blow last year when the government cracked down on Mountain View company \u003ca href=\"https://www.23andme.com/\">23andMe\u003c/a>.\u003c/p>\n\u003cp>That was the last consumer gene testing company still offering health information after two years of federal efforts to regulate the industry. Unlike other companies, many of which folded or sold, 23andMe is working with regulators to come back to the consumer genetic health market.\u003c/p>\n\u003cp>\u003cstrong>A Passion for Consumer Genetics\u003c/strong>\u003c/p>\n\u003cp>On a recent Thursday evening at the \u003ca href=\"http://www.calacademy.org/\">California Academy of Sciences\u003c/a> in San Francisco, the star of the show was not the giant T-Rex skeleton in the lobby but a small-framed, energetic Silicon Valley entrepreneur speaking about personal genetics.\u003c/p>\n\u003caside class=\"pullquote alignleft\">‘One of the main things people think about when they think of their genetic information, is that they want the health interpretation.’\u003c/aside>\n\u003cp>“I want to ask this audience, how many people have ever had a genetic test?” said \u003ca href=\"https://www.23andme.com/about/board/\">Anne Wojcicki\u003c/a>, CEO of 23andMe.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Of about 150 people in the audience, some 30 people raised their hands.\u003c/p>\n\u003cp>“So my goal is in the next ten years that every single one of you would raise your hand,” Wojcicki said.\u003c/p>\n\u003cp>Wojcicki said since 2007, more than half a million customers have sent in a saliva sample and gotten information that included their risks for developing cardiac disease and breast cancer, as well genetic traits such as how fast they metabolize caffeine. But last November the FDA ordered 23andMe to stop sales of its $99 tests.\u003c/p>\n\u003cp>\u003cstrong>FDA to 23andMe: Stop Selling Gene Tests\u003c/strong>\u003c/p>\n\u003cp>\u003ca href=\"http://www.fda.gov/newsevents/testimony/ucm219925.htm\">The FDA said\u003c/a>, in a very public letter, that the company’s test kit was a medical device that needed to be regulated and that 23andMe failed to prove it was interpreting health results accurately.\u003c/p>\n\u003cfigure id=\"attachment_17192\" class=\"wp-caption alignleft\" style=\"max-width: 252px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-17192\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2014/05/Wojcicki-216x162.jpg\" alt=\"23andMe CEO Anne Wojcicki, speaking at the annual SXSW festival in Austin, Texas in March 2014. (Jenny Oh/KQED)\" width=\"252\" height=\"189\">\u003cfigcaption class=\"wp-caption-text\">23andMe CEO Anne Wojcicki, speaking at the annual SXSW festival in Austin, Texas in March 2014. (Jenny Oh/KQED)\u003c/figcaption>\u003c/figure>\n\u003cp>Wojcicki said the ruling has hit her company hard. “As a result, we have had to stop offering our healthcare service, and it’s had a significant impact because it’s one of the main things people think about when they think of their genetic information, is that they want the health interpretation.”\u003c/p>\n\u003cp>So now, 23andMe is working with the FDA in an effort to once again be able to offer health information. Meanwhile, the company can still provide ancestry information, which is already a crowded field.\u003c/p>\n\u003cp>Hank Greely directs the \u003ca href=\"https://www.law.stanford.edu/organizations/programs-and-centers/center-for-law-and-the-biosciences\">Center for Law and the Biosciences\u003c/a> at Stanford. He said dwindling sales will impact the company’s efforts to build a sizable research database—and that’s important to its business strategy.\u003c/p>\n\u003cp>“For those customers who agree to it by signing a somewhat opaque consent form,” Greely said, “they can sell that information to pharma and bio, but without lots of new customers coming in that service becomes less attractive to pharma and biotech.”\u003c/p>\n\u003cp>Some have criticized 23andme for considering selling anonymized data. But Wojcicki is unapologetic.\u003c/p>\n\u003cp>“23andMe partners with those companies because those are the people who are making therapies,” she said. “And if we want to get better therapies for breast cancer, and you want to get better therapies for asthma and migraines and all kinds of the other conditions that impact our lives, we have to work with pharma companies.”\u003cbr>\n\u003cstrong>\u003cbr>\nBig Data May Lead to Medical Breakthroughs\u003c/strong>\u003c/p>\n\u003cp>And here’s where consumer genetics isn’t just about the consumer. All that genetic information, or big data, can be used to run studies in search of medical breakthroughs. That means any company that wants to stay at the forefront has to keep up with the changing science.\u003c/p>\n\u003caside class=\"pullquote alignleft\">‘We know that the world has been quite focused on getting the so-called thousand-dollar genome.’\u003c/aside>\n\u003cp>In your human genome you have an entire set of 23 human chromosomes, made up of, among other things, DNA building blocks called base pairs. The human genome is composed of 3 billion base pairs.\u003c/p>\n\u003cp>Right now consumer gene tests take tiny snips of less than a million base pairs to look at one person’s unique genetic blueprint. Each of these unique variations is called a snp (yep, pronounced “snip”), for “single nucleotide polymorphism.”\u003c/p>\n\u003cp>\u003cstrong>The Future Lies in Sequencing the Whole Genome\u003c/strong>\u003c/p>\n\u003cp>But a snp is just a fraction of the entire genome. Scientists say the key to the future of genetics lies in sequencing the whole genome.\u003c/p>\n\u003cp>“We know that the world has been quite focused on getting the so-called thousand-dollar genome,” said Vance Vanier, vice president of reproductive and genetic health at San Diego-based \u003ca href=\"http://www.illumina.com/\">Illumina\u003c/a>. The company has just unveiled a system it claims can sequence a human genome for $1,000. That’s a big drop from the nearly $3 billion dollar price tag to sequence the first genome in 2003.\u003c/p>\n\u003cp>“I think the story of the next five years is to see that affordability spread more and more to broader segments of society and to clinical laboratories specifically,” said Vanier, who was CEO of an early consumer gene testing company called Navigenics.\u003c/p>\n\u003cp>And while he believes genetic testing will continue to be done primarily through medical professionals, he said he still sees a place for consumer gene tests. After all, Vanier said, there was a time home pregnancy tests had to be done in a doctor’s office. Now people can even buy over-the-counter HIV tests.\u003c/p>\n\u003cp>“I think the pattern you see,” Vanier said, “is as information gets better understood and as there are more social safeguards around it to protect from a misuse of it, then there is increasing comfort of how it can evolve into the consumer market.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>And so the debate continues between those that believe accessing your DNA has become a basic right and those who believe gene tests are better left to a doctor.\u003cbr>\n\u003cem>\u003cbr>\nSince this story published, 23andMe officials confirm they \u003ca href=\"http://www.reuters.com/article/2014/05/06/23andme-genetictesting-idUSL2N0NS0Y820140506?feedType=RSS\">are considering selling their gene tests in markets outside the U.S.\u003c/a> after facing hurdles with the FDA.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/science/17133/consumer-gene-tests-whats-the-future","authors":["212"],"categories":["science_46","science_30","science_29","science_39","science_40","science_43"],"tags":["science_304","science_1050","science_64","science_326"],"featImg":"science_17201","label":"science"},"science_12153":{"type":"posts","id":"science_12153","meta":{"index":"posts_1591205157","site":"science","id":"12153","score":null,"sort":[1387333004000]},"guestAuthors":[],"slug":"click-to-like-my-genome-part-two","title":"Click to \"Like\" My Genome: Part Two","publishDate":1387333004,"format":"aside","headTitle":"Click to “Like” My Genome: Part Two | KQED","labelTerm":{"site":"science"},"content":"\u003cfigure id=\"attachment_12154\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/healthrisks.jpeg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12154\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/healthrisks.jpeg\" alt=\"Click image to enlarge. \" width=\"640\" height=\"360\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Screenshot of my test results from the 23andme.com website. Click image to enlarge.\u003c/figcaption>\u003c/figure>\n\u003cp>\u003ca href=\"http://ww2.kqed.org/science/2013/09/12/click-to-like-my-genome-home-genetic-testing-goes-social/\">In my last post,\u003c/a> I wrote about my decision to test my DNA by sending a saliva sample to the popular personal genomics company \u003ca href=\"https://www.23andme.com/\">23andMe\u003c/a>. I had just received my results and was eager to spend some private time with my DNA. There are two basic areas of 23andMe to explore: health and ancestry — at least there used to be. Last month, the \u003ca href=\"http://www.npr.org/templates/story/story.php?storyId=247220418\">FDA ordered the Silicon Valley company to shut down its genetics service\u003c/a>, declaring it was making marketing claims beyond what is legal. Now consumers buying the test will get their raw genetic data and ancestry information but — unlike my results — none of the meaty stuff, like disease risk, individual health traits or drug interaction possibilities.\u003c/p>\n\u003cp>If I had signed up for the new, paltrier 23andMe service, I would not have learned that I have a slightly elevated risk for 22 diseases, including immune disorders like Crohn’s and Lupus. I wouldn’t have found out that I am a fast metabolizer of caffeine, have a \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed?cmd=Search&term=19228618\">sensitivity to the anticoagulant Coumadin,\u003c/a> am resistant to the stomach flu, am likely lactose-intolerant, and that my \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed?cmd=Search&term=17984066\">IQ was likely raised 5-7 points because I was breast-fed.\u003c/a>\u003c/p>\n\u003cp>This genetics information was my entree into a community of 23andMe’ers who share some of my findings. For example, one click on the Crohn’s Community tab and I found several dozen members discussing their shared risk for the disease and raising questions such as:\u003c/p>\n\u003cp>\u003cem>…What if those of us with Crohn’s could sequence our gut bacterial colonies? …Would this be something others here might consider?\u003c/em>\u003c/p>\n\u003cp>And in response, another user got to the heart of the personalized testing philosophy:\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cem>I think between my 23 and me and \u003ca href=\"http://ubiome.com/\">uBiome testing\u003c/a> it will give me a lot more data to work with in actively managing my health care.\u003c/em>\u003cem> I may have to be pushy about it though. My old Doc was excited to have somebody that wasn’t a passive consumer of doctor services and instead researched and discussed data and courses of action in managing health care. \u003c/em>\u003c/p>\n\u003cp>There are hundreds of forums on 23andMe, each buzzing about shared traits, mutations and tendencies.\u003c/p>\n\u003cp>The kvetching was often quite sophisticated:\u003c/p>\n\u003cp>\u003cem>Is there an identifier for \u003c/em>\u003ca href=\"http://www.dysphonia.org/\">\u003cem>Spasmodic Dysphonia\u003c/em>\u003c/a>\u003cem> (vocal cords) or \u003c/em>\u003ca href=\"http://www.blepharospasm.org/\">\u003cem>Blepharospasms\u003c/em>\u003c/a>\u003cem> (eyelids)?\u003c/em>\u003cem> I have Spasmodic Dysphonia and my mother and older sister have blepharospasms…\u003c/em> \u003cem>How do I find out if my children have this gene?\u003c/em>\u003cem>\u003c/em>\u003c/p>\n\u003cp>There’s nothing new about people getting together to compare notes about their health. We all look to those around us to determine whether we’re OK — whether whatever symptom we might have is normal. I realized these forums were, at least in part, support groups. But many of these people – who spanned age, gender, race, and location — were connecting based on extremely specific health concerns for which they often had no symptoms. \u003cem>\u003c/em>\u003c/p>\n\u003cp>Clearly, people were striving to connect the dots of their health, and maybe to find some comfort from people whose genetic makeup was similar to their own. I wondered if these nests of speculation were where a genetic counselor might fit in, particularly for those who were sick. Would some of these people seek medical treatment based on some combination of 23andMe’s reports and their conversations in its forums? The U.S. government is asking the same questions.\u003c/p>\n\u003cp>The FDA challenge may hurt the personal genetics industry in the short run. No traits, no health risks — no fun. But the company is still allowed to show ancestry results. In fact, there was a message glowing green in my 23andMe Inbox.\u003c/p>\n\u003cp>\u003cem> \u003c/em>\u003cem>A relative would like to make contact with you.\u003c/em>\u003c/p>\n\u003cp>The message:\u003c/p>\n\u003cp>\u003cem>Through our shared DNA, 23andMe has identified us as relatives. Our predicted relationship is 5th Cousin, with a likely range of 3rd to Distant Cousin. \u003c/em>\u003c/p>\n\u003cp>\u003cem>Thank you for your time and I hope you’ll be interested in sharing genomes!\u003c/em>\u003c/p>\n\u003cfigure id=\"attachment_4466\" class=\"wp-caption aligncenter\" style=\"max-width: 1673px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/06/Arwen-working.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-4466 \" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/06/Arwen-working.jpg\" alt=\"Arwen working-scaled\" width=\"1673\" height=\"941\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">With a click, I decide whether to “share genomes” with distant cousins around the world. Photo: Joshua Cassidy / KQED Science\u003c/figcaption>\u003c/figure>\n\u003cp>So. If I were to “share genomes” with this relative, a heredity buff of Norwegian descent whose pedigree, he went on to say, was posted elsewhere online — what exactly would that mean? What exactly would I be sharing – my entire results or just select information? How would this be similar to friending a distant acquaintance on Facebook, and how would it be different?\u003c/p>\n\u003cp>I clicked on a tab that produced a shocking list of 972 distant cousins, ranked by their genetic proximity to me via maternal \u003ca href=\"http://en.wikipedia.org/wiki/Haplotype\">haplotype\u003c/a>. Depending on how much personal information these cousins of mine had submitted to the site, I could see their birthdates, places of origin and residence, names and sometimes photos. They were young women, old men and everyone in between. If I chose, I could expand my family by nearly a thousand with a few clicks.\u003c/p>\n\u003cp>Shown as colored dots on a map of the world, the multitude of my relations was even more impressive. I found familial hotspots in New England, old England and Ireland, Central and Eastern Europe, Sicily, Scandinavia, North Africa, even a few odd cousins scattered in the islands.\u003c/p>\n\u003cp>None of us are really that far apart, genetically, and the map offered a glimpse of the movement of people across the world. The more people who joined 23andMe and shared their genomes, the more comprehensive a picture we could form of a global family tree. A day might come when I would know precisely how related I was to, for example — you. As I explored 23andMe, I enjoyed reading what other people thought about their ancestry and health.\u003c/p>\n\u003cp>So it might sound selfish when I say I still didn’t want to become friends with them, much less relatives. Our kinship was about our fascination with and curiosity about our own bodies and roots, not really about each other. Here we all were, gathered to celebrate the miracle of this new kind of self-awareness we’d purchased for only $99. But increasingly, I’ve found that I share in \u003ca href=\"http://www.scientificamerican.com/article.cfm?id=23andme-is-terrifying-but-not-for-reasons-fda\">concerns about giving away my most personal information\u003c/a> to a private company based mostly on the assumption of its benevolence, a la Google, and that I didn’t want to share my genes with my new online brethren.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>This week, as the company continues to negotiate with the FDA behind the scenes over the rights to market its genetic health data, I realized that at least for a brief time, I’m one of a select group that can still log in and peruse my genetic health risks and traits online. But if I have access to the 23andMe’s studies and predictions, shouldn’t everyone? I suspect that snatching away access to this data has only fanned the flames of our curiosity. In this context, 23andMe’s results feel less like a diversion and more like something we have a right to explore.\u003c/p>\n\n","blocks":[],"excerpt":"The FDA challenge may hurt the personal genetics industry in the short run. No traits, no health risks -- no fun. But the company is still allowed to show ancestry results. 23andMe's map of my distant relations offered a glimpse of the movement of people across the world. The more people who joined and shared their genomes, the more comprehensive a picture we could form of a global family tree. A day might come when I would know precisely how related I was to, for example -- you. ","status":"publish","parent":0,"modified":1704934526,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":24,"wordCount":1206},"headData":{"title":"Click to \"Like\" My Genome: Part Two | KQED","description":"The FDA challenge may hurt the personal genetics industry in the short run. No traits, no health risks -- no fun. But the company is still allowed to show ancestry results. 23andMe's map of my distant relations offered a glimpse of the movement of people across the world. The more people who joined and shared their genomes, the more comprehensive a picture we could form of a global family tree. A day might come when I would know precisely how related I was to, for example -- you. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Click to \"Like\" My Genome: Part Two","datePublished":"2013-12-18T02:16:44.000Z","dateModified":"2024-01-11T00:55:26.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"sticky":false,"path":"/science/12153/click-to-like-my-genome-part-two","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cfigure id=\"attachment_12154\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/healthrisks.jpeg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-12154\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/healthrisks.jpeg\" alt=\"Click image to enlarge. \" width=\"640\" height=\"360\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Screenshot of my test results from the 23andme.com website. Click image to enlarge.\u003c/figcaption>\u003c/figure>\n\u003cp>\u003ca href=\"http://ww2.kqed.org/science/2013/09/12/click-to-like-my-genome-home-genetic-testing-goes-social/\">In my last post,\u003c/a> I wrote about my decision to test my DNA by sending a saliva sample to the popular personal genomics company \u003ca href=\"https://www.23andme.com/\">23andMe\u003c/a>. I had just received my results and was eager to spend some private time with my DNA. There are two basic areas of 23andMe to explore: health and ancestry — at least there used to be. Last month, the \u003ca href=\"http://www.npr.org/templates/story/story.php?storyId=247220418\">FDA ordered the Silicon Valley company to shut down its genetics service\u003c/a>, declaring it was making marketing claims beyond what is legal. Now consumers buying the test will get their raw genetic data and ancestry information but — unlike my results — none of the meaty stuff, like disease risk, individual health traits or drug interaction possibilities.\u003c/p>\n\u003cp>If I had signed up for the new, paltrier 23andMe service, I would not have learned that I have a slightly elevated risk for 22 diseases, including immune disorders like Crohn’s and Lupus. I wouldn’t have found out that I am a fast metabolizer of caffeine, have a \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed?cmd=Search&term=19228618\">sensitivity to the anticoagulant Coumadin,\u003c/a> am resistant to the stomach flu, am likely lactose-intolerant, and that my \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed?cmd=Search&term=17984066\">IQ was likely raised 5-7 points because I was breast-fed.\u003c/a>\u003c/p>\n\u003cp>This genetics information was my entree into a community of 23andMe’ers who share some of my findings. For example, one click on the Crohn’s Community tab and I found several dozen members discussing their shared risk for the disease and raising questions such as:\u003c/p>\n\u003cp>\u003cem>…What if those of us with Crohn’s could sequence our gut bacterial colonies? …Would this be something others here might consider?\u003c/em>\u003c/p>\n\u003cp>And in response, another user got to the heart of the personalized testing philosophy:\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>I think between my 23 and me and \u003ca href=\"http://ubiome.com/\">uBiome testing\u003c/a> it will give me a lot more data to work with in actively managing my health care.\u003c/em>\u003cem> I may have to be pushy about it though. My old Doc was excited to have somebody that wasn’t a passive consumer of doctor services and instead researched and discussed data and courses of action in managing health care. \u003c/em>\u003c/p>\n\u003cp>There are hundreds of forums on 23andMe, each buzzing about shared traits, mutations and tendencies.\u003c/p>\n\u003cp>The kvetching was often quite sophisticated:\u003c/p>\n\u003cp>\u003cem>Is there an identifier for \u003c/em>\u003ca href=\"http://www.dysphonia.org/\">\u003cem>Spasmodic Dysphonia\u003c/em>\u003c/a>\u003cem> (vocal cords) or \u003c/em>\u003ca href=\"http://www.blepharospasm.org/\">\u003cem>Blepharospasms\u003c/em>\u003c/a>\u003cem> (eyelids)?\u003c/em>\u003cem> I have Spasmodic Dysphonia and my mother and older sister have blepharospasms…\u003c/em> \u003cem>How do I find out if my children have this gene?\u003c/em>\u003cem>\u003c/em>\u003c/p>\n\u003cp>There’s nothing new about people getting together to compare notes about their health. We all look to those around us to determine whether we’re OK — whether whatever symptom we might have is normal. I realized these forums were, at least in part, support groups. But many of these people – who spanned age, gender, race, and location — were connecting based on extremely specific health concerns for which they often had no symptoms. \u003cem>\u003c/em>\u003c/p>\n\u003cp>Clearly, people were striving to connect the dots of their health, and maybe to find some comfort from people whose genetic makeup was similar to their own. I wondered if these nests of speculation were where a genetic counselor might fit in, particularly for those who were sick. Would some of these people seek medical treatment based on some combination of 23andMe’s reports and their conversations in its forums? The U.S. government is asking the same questions.\u003c/p>\n\u003cp>The FDA challenge may hurt the personal genetics industry in the short run. No traits, no health risks — no fun. But the company is still allowed to show ancestry results. In fact, there was a message glowing green in my 23andMe Inbox.\u003c/p>\n\u003cp>\u003cem> \u003c/em>\u003cem>A relative would like to make contact with you.\u003c/em>\u003c/p>\n\u003cp>The message:\u003c/p>\n\u003cp>\u003cem>Through our shared DNA, 23andMe has identified us as relatives. Our predicted relationship is 5th Cousin, with a likely range of 3rd to Distant Cousin. \u003c/em>\u003c/p>\n\u003cp>\u003cem>Thank you for your time and I hope you’ll be interested in sharing genomes!\u003c/em>\u003c/p>\n\u003cfigure id=\"attachment_4466\" class=\"wp-caption aligncenter\" style=\"max-width: 1673px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/06/Arwen-working.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-4466 \" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/06/Arwen-working.jpg\" alt=\"Arwen working-scaled\" width=\"1673\" height=\"941\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">With a click, I decide whether to “share genomes” with distant cousins around the world. Photo: Joshua Cassidy / KQED Science\u003c/figcaption>\u003c/figure>\n\u003cp>So. If I were to “share genomes” with this relative, a heredity buff of Norwegian descent whose pedigree, he went on to say, was posted elsewhere online — what exactly would that mean? What exactly would I be sharing – my entire results or just select information? How would this be similar to friending a distant acquaintance on Facebook, and how would it be different?\u003c/p>\n\u003cp>I clicked on a tab that produced a shocking list of 972 distant cousins, ranked by their genetic proximity to me via maternal \u003ca href=\"http://en.wikipedia.org/wiki/Haplotype\">haplotype\u003c/a>. Depending on how much personal information these cousins of mine had submitted to the site, I could see their birthdates, places of origin and residence, names and sometimes photos. They were young women, old men and everyone in between. If I chose, I could expand my family by nearly a thousand with a few clicks.\u003c/p>\n\u003cp>Shown as colored dots on a map of the world, the multitude of my relations was even more impressive. I found familial hotspots in New England, old England and Ireland, Central and Eastern Europe, Sicily, Scandinavia, North Africa, even a few odd cousins scattered in the islands.\u003c/p>\n\u003cp>None of us are really that far apart, genetically, and the map offered a glimpse of the movement of people across the world. The more people who joined 23andMe and shared their genomes, the more comprehensive a picture we could form of a global family tree. A day might come when I would know precisely how related I was to, for example — you. As I explored 23andMe, I enjoyed reading what other people thought about their ancestry and health.\u003c/p>\n\u003cp>So it might sound selfish when I say I still didn’t want to become friends with them, much less relatives. Our kinship was about our fascination with and curiosity about our own bodies and roots, not really about each other. Here we all were, gathered to celebrate the miracle of this new kind of self-awareness we’d purchased for only $99. But increasingly, I’ve found that I share in \u003ca href=\"http://www.scientificamerican.com/article.cfm?id=23andme-is-terrifying-but-not-for-reasons-fda\">concerns about giving away my most personal information\u003c/a> to a private company based mostly on the assumption of its benevolence, a la Google, and that I didn’t want to share my genes with my new online brethren.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>This week, as the company continues to negotiate with the FDA behind the scenes over the rights to market its genetic health data, I realized that at least for a brief time, I’m one of a select group that can still log in and peruse my genetic health risks and traits online. But if I have access to the 23andMe’s studies and predictions, shouldn’t everyone? I suspect that snatching away access to this data has only fanned the flames of our curiosity. In this context, 23andMe’s results feel less like a diversion and more like something we have a right to explore.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/science/12153/click-to-like-my-genome-part-two","authors":["6444"],"categories":["science_30","science_39"],"tags":["science_304","science_1050","science_327","science_326","science_5181"],"featImg":"science_12154","label":"science"},"science_11810":{"type":"posts","id":"science_11810","meta":{"index":"posts_1591205157","site":"science","id":"11810","score":null,"sort":[1386604822000]},"guestAuthors":[],"slug":"consumer-genetic-testing-company-23andme-faces-its-own-test-from-the-fda","title":"Consumer Genetic Testing Company 23andMe Faces Its Own Test From the FDA","publishDate":1386604822,"format":"aside","headTitle":"Consumer Genetic Testing Company 23andMe Faces Its Own Test From the FDA | KQED","labelTerm":{"site":"science"},"content":"\u003cfigure id=\"attachment_11825\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/FDA.jpg\" rel=\"attachment wp-att-11825\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11825\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/FDA.jpg\" alt=\"The FDA has ordered 23andMe to stop providing health data to new customers and they have complied. What this means for the future of direct-to-consumer genetics tests is anyone's guess. Image courtesy of Wikimedia Commons.\" width=\"640\" height=\"291\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">The FDA has ordered 23andMe to stop providing health data to new customers and they have complied. What this means for the future of direct-to-consumer genetics tests is anyone’s guess. Image courtesy of \u003ca href=\"http://upload.wikimedia.org/wikipedia/commons/thumb/7/7d/Food_and_Drug_Administration_logo.svg/1000px-Food_and_Drug_Administration_logo.svg.png\">Wikimedia Commons\u003c/a>.\u003c/figcaption>\u003c/figure>\n\u003cp>In response to a \u003ca href=\"http://www.reuters.com/article/2013/11/25/us-23andme-fda-warning-idUSBRE9AO0MG20131125\" target=\"_blank\" rel=\"noopener\">letter from the FDA\u003c/a>, a direct-to-consumer (DTC) genetic testing company in Mountain View, California called 23andMe has agreed to\u003ca href=\"http://blog.23andme.com/news/23andme-provides-an-update-regarding-fdas-review/\"> stop providing health data\u003c/a> on new purchases of its $99 genetic tests. Part of the reason the FDA has gone after 23andMe is because the company did not deal with them in a timely fashion. If you poke the bear, be prepared to get mauled! But there is much more to this than a fit of pique by the FDA.\u003c/p>\n\u003cp>The FDA is genuinely concerned that 23andMe is overselling their product. And for some of what 23andMe tests, they are almost certainly right. But for a lot of what they report, 23andMe is spot on. The tricky part will be to tweak the parts that are not well presented without eliminating the many wonderful things the company can tell you.\u003c/p>\n\u003cp>This also isn’t just a story about an upstart genetic testing company doing battle with the FDA either. It is the first step in a discussion about how people’s genetic information will be communicated to them once their DNA has been completely read. And given how cheap and easy this is becoming, that future will be here sooner rather than later.\u003c/p>\n\u003cp>\u003cstrong>A Little Bit of Knowledge\u003c/strong>\u003c/p>\n\u003cfigure id=\"attachment_11816\" class=\"wp-caption alignright\" style=\"max-width: 250px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/InsulinPump.jpg\" rel=\"attachment wp-att-11816\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11816\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/InsulinPump.jpg\" alt=\"Most people cannot tell from their DNA whether or not they will develop diabetes. Image courtesy of Wikimedia Commons.\" width=\"250\" height=\"241\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Most people cannot tell from their DNA whether or not they will develop diabetes. Image courtesy of \u003ca href=\"http://commons.wikimedia.org/wiki/File:Insulin_pump_with_infusion_set.jpg\">Wikimedia Commons\u003c/a>.\u003c/figcaption>\u003c/figure>\n\u003cp>Many people are surprised at how little scientists understand about how our DNA defines who we are and what our future health risks might be. There is so much going on in terms of multiple genes and the environment that we are currently incapable of making good predictions about most people’s risks for complex diseases like Type 2 diabetes or Alzheimer’s just from their DNA.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Now this isn’t to say we know nothing. We are very good (although still not perfect) at rare, fairly simple genetic diseases like cystic fibrosis and sickle cell anemia. And we know a few things about the more complex diseases and are learning more all the time. But most people can’t get tell from their genetic results whether they will get Type 2 diabetes or not. Frankly, they can’t really even tell whether or not they are at a higher risk for the disease. Which brings us to 23andMe.\u003c/p>\n\u003cp>23andMe delivers a set of results based on your DNA that indicates your risk for a whole set of simple and complex diseases. Presented in the right way, this could be a boon to anyone who takes the test that can handle getting results like this (especially if they are adopted and so have no information on their family history of disease).\u003c/p>\n\u003cp>They’d learn about what simple genetic diseases they and their partners might pass down to their future children and they’d see the continuing progress on understanding the genetics behind the more complex diseases. And as an added bonus they’d learn about their ancestry and about some harmless traits like red hair and blue eyes. How cool is that!\u003c/p>\n\u003cp>The problem in all of this is how 23andMe reports data about complex diseases. The FDA is genuinely concerned that 23andMe is overselling this aspect of their testing. And up to a point, they may be right.\u003c/p>\n\u003cp>You can see this from a caller’s comments from a \u003ca href=\"http://www.kqed.org/a/forum/R201311260900\">recent broadcast\u003c/a> of KQED’s radio show FORUM. This 23andMe customer called in to say that her 23andMe results assured her that she doesn’t have a big risk for Alzheimer’s. Her 23andMe results do no such thing.\u003c/p>\n\u003cfigure id=\"attachment_11819\" class=\"wp-caption alignleft\" style=\"max-width: 250px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/AlzBrain.jpg\" rel=\"attachment wp-att-11819\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11819\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/AlzBrain.jpg\" alt=\"A no answer for Alzheimer's on a 23andMe test does not mean you are not at a higher risk for the disease. This image of an Alzheimer brain courtesy of Wikimedia Commons. \" width=\"250\" height=\"262\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">A no answer for Alzheimer’s on a 23andMe test does not mean you are not at a higher risk for the disease. This image of an Alzheimer brain courtesy of \u003ca href=\"http://commons.wikimedia.org/wiki/File:PET_Alzheimer.jpg\">Wikimedia Commons\u003c/a>.\u003c/figcaption>\u003c/figure>\n\u003cp>What her results do tell her is that she does not have a common marker, APOE e4, that increases a person’s risk for Alzheimer’s. It says nothing about the other unknown markers that she might have that could increase her risk for getting this most common form of dementia. And there are undoubtedly plenty of these. APOE e4 is partly to blame for many but by no means all cases of Alzheimer’s.\u003c/p>\n\u003cp>It is hard to know if she came to this conclusion because of the way 23andMe presents its data or just because of a misunderstanding about what genetic results mean for complicated results like this. But certainly there is always room for improvement in data presentation.\u003c/p>\n\u003cp>As you can see \u003ca href=\"https://www.23andme.com/health/alzheimers/\">here\u003c/a>, there are an awful lot of words on 23andMe’s page on Alzheimer’s disease and the point about APOE e4 being one of many potential factors is buried pretty deep. It would be nice if that point were brought up to the top so people wouldn’t either overreact or underreact to their results. It should be made clear that if they have the marker they are indeed at an increased risk but that if they don’t, they may still be at a higher risk because of other unknown markers.\u003c/p>\n\u003cp>This sort of misunderstanding can have real consequences. In the FDA’s letter they suggested that women may go and have their breasts removed because of a genetic result similar to \u003ca href=\"http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=0\">Angelina Jolie’s\u003c/a>. This isn’t a particularly useful example as very few insurance companies would authorize the expense of this kind of surgery based on a single direct to consumer genetic test.\u003c/p>\n\u003cp>Imagine instead that Type 2 diabetes runs in your family and you get your results back and interpret them to say that you are not at a higher risk for the disease. So you relax and get tested less often even though you are at a higher risk. No good will come from that.\u003c/p>\n\u003cp>It is scenarios like these that are a big part of the FDA’s concern. People will react to what they think are meaningful results and some harm will come to them. (I don’t have the space to go into another concern of the FDA—that the test will give a wrong result. Click \u003ca href=\"http://www.theverge.com/2013/12/3/5171126/can-23andme-survive-the-fda\">here \u003c/a>for a nice summary of this part of the problem.)\u003c/p>\n\u003cfigure id=\"attachment_11823\" class=\"wp-caption alignright\" style=\"max-width: 250px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/CFlung.jpg\" rel=\"attachment wp-att-11823\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11823\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/CFlung.jpg\" alt=\"23andMe is very good at predicting simple genetic diseases like cystic fibrosis. This image of the lung of a patient with CF courtesy of Wikimedia Commons.\" width=\"250\" height=\"204\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">23andMe is very good at predicting simple genetic diseases like cystic fibrosis. This image of the lung of a patient with CF courtesy of \u003ca href=\"http://commons.wikimedia.org/wiki/File:HRCT_scans_of_diffuse_panbronchiolitisCropped.jpg\">Wikimedia Commons\u003c/a>.\u003c/figcaption>\u003c/figure>\n\u003cp>Now having gone through all of this it is important to reiterate that this is only part of what 23andMe tells its customers based on their genetic test. There is a ton of good information that we don’t want to lose by shutting down the whole test.\u003c/p>\n\u003cp>Perhaps 23andMe can resolve some of its issues with the FDA by making it clearer that science doesn’t allow them to predict much of anything yet about most complex diseases. So maybe, for example, make it clear that not having APOE e4 does not mean you aren’t at a higher risk for Alzheimer’s but instead that you don’t have a marker known to increase your risk. Or indicate upfront that their data cannot accurately predict their future risk for diseases like Type 2 diabetes. This isn’t as sexy but is still useful information to have.\u003c/p>\n\u003cp>One possibility would be for 23andMe to have two bins of health data. One is for the information that is solid. For example, this bin might include details about your carrier status for simple, Mendelian genetic diseases like cystic fibrosis, sickle cell anemia and so on. If you and your partner carry one of these, then each of your kids would have a 25% chance of getting the disease. This is a useful thing to know that 23andMe makes simple and affordable.\u003c/p>\n\u003cp>The other bin would be for genetic results from good studies that deal with complex genetic diseases that are not yet fully understood. These results would be presented as what they are—works in progress that might one day be meaningful. This bin would be filled with much of what 23andMe reports.\u003c/p>\n\u003cp>Even with these tweaks there may still be misunderstanding because of the complex nature of these genetic tests. But 23andMe should not necessarily be held accountable for every possible misunderstanding. With these sorts of tweaks, people taking a 23andMe test will have a better understanding than many people get from their doctor.\u003c/p>\n\u003cp>As the person who answers genetics questions from the public at \u003ca href=\"http://genetics.thetech.org/ask-a-geneticist\">Ask a Geneticist\u003c/a>, I get an awful lot of questions from people who don’t understand the results they get from their doctor about a genetic test their doctor prescribed. For example, one person wrote in that her doctor told her she was A1298C and not to worry. She was given no information about the gene that was tested or what the numbers and letters even mean. No matter what its shortcomings, if 23andMe offered such a test it would do far better than this!\u003c/p>\n\u003cp>As I said earlier, this isn’t just about 23andMe either. This discussion may set the precedent for how people will receive their genetic information in the future. A big question is whether people should have direct access to these results or if they should be delivered through an intermediary who can help them better understand what their results really mean. This question needs to be answered soon.\u003c/p>\n\u003cp>My guess is that here in the U.S. anyone who wants it will be eventually be able to get direct access to their genetic information. Given that, the best course of action might be to make sure people understand what these tests can and can’t tell you.\u003c/p>\n\u003cp>A high school class similar to a required health course might be the answer for the next generation. The tricky part will be arming people 18 and over with the information they need to deal with this complex information. And 23andMe has taken a step in the right direction with this last point. They have been involved in a new, free \u003ca href=\"https://www.udacity.com/course/bio110\">Udacity online course\u003c/a> that should be a great start in bringing people up to speed.\u003c/p>\n\u003cp>\u003cem>(Unfortunately even with this too long a piece I couldn’t cover everything. I left out the important issue of genetic counseling as well as what FDA regulation of direct to consumer tests means for other medical devices like that pedometer on your iPhone.)\u003c/em>\u003c/p>\n\u003cp>\u003cem>Nice summary of the FDA vs. 23andMe\u003c/em>\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>http://www.youtube.com/watch?v=VZXDtTNqDuQ\u003c/p>\n\n","blocks":[],"excerpt":"In response to a letter from the FDA, a direct-to-consumer (DTC) genetic testing company in Mountain View, California called 23andMe has agreed to stop providing health data on new purchases of its $99 genetic tests.","status":"publish","parent":0,"modified":1704934575,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":29,"wordCount":1881},"headData":{"title":"Consumer Genetic Testing Company 23andMe Faces Its Own Test From the FDA | KQED","description":"In response to a letter from the FDA, a direct-to-consumer (DTC) genetic testing company in Mountain View, California called 23andMe has agreed to stop providing health data on new purchases of its $99 genetic tests.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Consumer Genetic Testing Company 23andMe Faces Its Own Test From the FDA","datePublished":"2013-12-09T16:00:22.000Z","dateModified":"2024-01-11T00:56:15.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"sticky":false,"path":"/science/11810/consumer-genetic-testing-company-23andme-faces-its-own-test-from-the-fda","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cfigure id=\"attachment_11825\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/FDA.jpg\" rel=\"attachment wp-att-11825\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11825\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/FDA.jpg\" alt=\"The FDA has ordered 23andMe to stop providing health data to new customers and they have complied. What this means for the future of direct-to-consumer genetics tests is anyone's guess. Image courtesy of Wikimedia Commons.\" width=\"640\" height=\"291\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">The FDA has ordered 23andMe to stop providing health data to new customers and they have complied. What this means for the future of direct-to-consumer genetics tests is anyone’s guess. Image courtesy of \u003ca href=\"http://upload.wikimedia.org/wikipedia/commons/thumb/7/7d/Food_and_Drug_Administration_logo.svg/1000px-Food_and_Drug_Administration_logo.svg.png\">Wikimedia Commons\u003c/a>.\u003c/figcaption>\u003c/figure>\n\u003cp>In response to a \u003ca href=\"http://www.reuters.com/article/2013/11/25/us-23andme-fda-warning-idUSBRE9AO0MG20131125\" target=\"_blank\" rel=\"noopener\">letter from the FDA\u003c/a>, a direct-to-consumer (DTC) genetic testing company in Mountain View, California called 23andMe has agreed to\u003ca href=\"http://blog.23andme.com/news/23andme-provides-an-update-regarding-fdas-review/\"> stop providing health data\u003c/a> on new purchases of its $99 genetic tests. Part of the reason the FDA has gone after 23andMe is because the company did not deal with them in a timely fashion. If you poke the bear, be prepared to get mauled! But there is much more to this than a fit of pique by the FDA.\u003c/p>\n\u003cp>The FDA is genuinely concerned that 23andMe is overselling their product. And for some of what 23andMe tests, they are almost certainly right. But for a lot of what they report, 23andMe is spot on. The tricky part will be to tweak the parts that are not well presented without eliminating the many wonderful things the company can tell you.\u003c/p>\n\u003cp>This also isn’t just a story about an upstart genetic testing company doing battle with the FDA either. It is the first step in a discussion about how people’s genetic information will be communicated to them once their DNA has been completely read. And given how cheap and easy this is becoming, that future will be here sooner rather than later.\u003c/p>\n\u003cp>\u003cstrong>A Little Bit of Knowledge\u003c/strong>\u003c/p>\n\u003cfigure id=\"attachment_11816\" class=\"wp-caption alignright\" style=\"max-width: 250px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/InsulinPump.jpg\" rel=\"attachment wp-att-11816\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11816\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/InsulinPump.jpg\" alt=\"Most people cannot tell from their DNA whether or not they will develop diabetes. Image courtesy of Wikimedia Commons.\" width=\"250\" height=\"241\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Most people cannot tell from their DNA whether or not they will develop diabetes. Image courtesy of \u003ca href=\"http://commons.wikimedia.org/wiki/File:Insulin_pump_with_infusion_set.jpg\">Wikimedia Commons\u003c/a>.\u003c/figcaption>\u003c/figure>\n\u003cp>Many people are surprised at how little scientists understand about how our DNA defines who we are and what our future health risks might be. There is so much going on in terms of multiple genes and the environment that we are currently incapable of making good predictions about most people’s risks for complex diseases like Type 2 diabetes or Alzheimer’s just from their DNA.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Now this isn’t to say we know nothing. We are very good (although still not perfect) at rare, fairly simple genetic diseases like cystic fibrosis and sickle cell anemia. And we know a few things about the more complex diseases and are learning more all the time. But most people can’t get tell from their genetic results whether they will get Type 2 diabetes or not. Frankly, they can’t really even tell whether or not they are at a higher risk for the disease. Which brings us to 23andMe.\u003c/p>\n\u003cp>23andMe delivers a set of results based on your DNA that indicates your risk for a whole set of simple and complex diseases. Presented in the right way, this could be a boon to anyone who takes the test that can handle getting results like this (especially if they are adopted and so have no information on their family history of disease).\u003c/p>\n\u003cp>They’d learn about what simple genetic diseases they and their partners might pass down to their future children and they’d see the continuing progress on understanding the genetics behind the more complex diseases. And as an added bonus they’d learn about their ancestry and about some harmless traits like red hair and blue eyes. How cool is that!\u003c/p>\n\u003cp>The problem in all of this is how 23andMe reports data about complex diseases. The FDA is genuinely concerned that 23andMe is overselling this aspect of their testing. And up to a point, they may be right.\u003c/p>\n\u003cp>You can see this from a caller’s comments from a \u003ca href=\"http://www.kqed.org/a/forum/R201311260900\">recent broadcast\u003c/a> of KQED’s radio show FORUM. This 23andMe customer called in to say that her 23andMe results assured her that she doesn’t have a big risk for Alzheimer’s. Her 23andMe results do no such thing.\u003c/p>\n\u003cfigure id=\"attachment_11819\" class=\"wp-caption alignleft\" style=\"max-width: 250px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/AlzBrain.jpg\" rel=\"attachment wp-att-11819\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11819\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/AlzBrain.jpg\" alt=\"A no answer for Alzheimer's on a 23andMe test does not mean you are not at a higher risk for the disease. This image of an Alzheimer brain courtesy of Wikimedia Commons. \" width=\"250\" height=\"262\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">A no answer for Alzheimer’s on a 23andMe test does not mean you are not at a higher risk for the disease. This image of an Alzheimer brain courtesy of \u003ca href=\"http://commons.wikimedia.org/wiki/File:PET_Alzheimer.jpg\">Wikimedia Commons\u003c/a>.\u003c/figcaption>\u003c/figure>\n\u003cp>What her results do tell her is that she does not have a common marker, APOE e4, that increases a person’s risk for Alzheimer’s. It says nothing about the other unknown markers that she might have that could increase her risk for getting this most common form of dementia. And there are undoubtedly plenty of these. APOE e4 is partly to blame for many but by no means all cases of Alzheimer’s.\u003c/p>\n\u003cp>It is hard to know if she came to this conclusion because of the way 23andMe presents its data or just because of a misunderstanding about what genetic results mean for complicated results like this. But certainly there is always room for improvement in data presentation.\u003c/p>\n\u003cp>As you can see \u003ca href=\"https://www.23andme.com/health/alzheimers/\">here\u003c/a>, there are an awful lot of words on 23andMe’s page on Alzheimer’s disease and the point about APOE e4 being one of many potential factors is buried pretty deep. It would be nice if that point were brought up to the top so people wouldn’t either overreact or underreact to their results. It should be made clear that if they have the marker they are indeed at an increased risk but that if they don’t, they may still be at a higher risk because of other unknown markers.\u003c/p>\n\u003cp>This sort of misunderstanding can have real consequences. In the FDA’s letter they suggested that women may go and have their breasts removed because of a genetic result similar to \u003ca href=\"http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=0\">Angelina Jolie’s\u003c/a>. This isn’t a particularly useful example as very few insurance companies would authorize the expense of this kind of surgery based on a single direct to consumer genetic test.\u003c/p>\n\u003cp>Imagine instead that Type 2 diabetes runs in your family and you get your results back and interpret them to say that you are not at a higher risk for the disease. So you relax and get tested less often even though you are at a higher risk. No good will come from that.\u003c/p>\n\u003cp>It is scenarios like these that are a big part of the FDA’s concern. People will react to what they think are meaningful results and some harm will come to them. (I don’t have the space to go into another concern of the FDA—that the test will give a wrong result. Click \u003ca href=\"http://www.theverge.com/2013/12/3/5171126/can-23andme-survive-the-fda\">here \u003c/a>for a nice summary of this part of the problem.)\u003c/p>\n\u003cfigure id=\"attachment_11823\" class=\"wp-caption alignright\" style=\"max-width: 250px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/CFlung.jpg\" rel=\"attachment wp-att-11823\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11823\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/12/CFlung.jpg\" alt=\"23andMe is very good at predicting simple genetic diseases like cystic fibrosis. This image of the lung of a patient with CF courtesy of Wikimedia Commons.\" width=\"250\" height=\"204\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">23andMe is very good at predicting simple genetic diseases like cystic fibrosis. This image of the lung of a patient with CF courtesy of \u003ca href=\"http://commons.wikimedia.org/wiki/File:HRCT_scans_of_diffuse_panbronchiolitisCropped.jpg\">Wikimedia Commons\u003c/a>.\u003c/figcaption>\u003c/figure>\n\u003cp>Now having gone through all of this it is important to reiterate that this is only part of what 23andMe tells its customers based on their genetic test. There is a ton of good information that we don’t want to lose by shutting down the whole test.\u003c/p>\n\u003cp>Perhaps 23andMe can resolve some of its issues with the FDA by making it clearer that science doesn’t allow them to predict much of anything yet about most complex diseases. So maybe, for example, make it clear that not having APOE e4 does not mean you aren’t at a higher risk for Alzheimer’s but instead that you don’t have a marker known to increase your risk. Or indicate upfront that their data cannot accurately predict their future risk for diseases like Type 2 diabetes. This isn’t as sexy but is still useful information to have.\u003c/p>\n\u003cp>One possibility would be for 23andMe to have two bins of health data. One is for the information that is solid. For example, this bin might include details about your carrier status for simple, Mendelian genetic diseases like cystic fibrosis, sickle cell anemia and so on. If you and your partner carry one of these, then each of your kids would have a 25% chance of getting the disease. This is a useful thing to know that 23andMe makes simple and affordable.\u003c/p>\n\u003cp>The other bin would be for genetic results from good studies that deal with complex genetic diseases that are not yet fully understood. These results would be presented as what they are—works in progress that might one day be meaningful. This bin would be filled with much of what 23andMe reports.\u003c/p>\n\u003cp>Even with these tweaks there may still be misunderstanding because of the complex nature of these genetic tests. But 23andMe should not necessarily be held accountable for every possible misunderstanding. With these sorts of tweaks, people taking a 23andMe test will have a better understanding than many people get from their doctor.\u003c/p>\n\u003cp>As the person who answers genetics questions from the public at \u003ca href=\"http://genetics.thetech.org/ask-a-geneticist\">Ask a Geneticist\u003c/a>, I get an awful lot of questions from people who don’t understand the results they get from their doctor about a genetic test their doctor prescribed. For example, one person wrote in that her doctor told her she was A1298C and not to worry. She was given no information about the gene that was tested or what the numbers and letters even mean. No matter what its shortcomings, if 23andMe offered such a test it would do far better than this!\u003c/p>\n\u003cp>As I said earlier, this isn’t just about 23andMe either. This discussion may set the precedent for how people will receive their genetic information in the future. A big question is whether people should have direct access to these results or if they should be delivered through an intermediary who can help them better understand what their results really mean. This question needs to be answered soon.\u003c/p>\n\u003cp>My guess is that here in the U.S. anyone who wants it will be eventually be able to get direct access to their genetic information. Given that, the best course of action might be to make sure people understand what these tests can and can’t tell you.\u003c/p>\n\u003cp>A high school class similar to a required health course might be the answer for the next generation. The tricky part will be arming people 18 and over with the information they need to deal with this complex information. And 23andMe has taken a step in the right direction with this last point. They have been involved in a new, free \u003ca href=\"https://www.udacity.com/course/bio110\">Udacity online course\u003c/a> that should be a great start in bringing people up to speed.\u003c/p>\n\u003cp>\u003cem>(Unfortunately even with this too long a piece I couldn’t cover everything. I left out the important issue of genetic counseling as well as what FDA regulation of direct to consumer tests means for other medical devices like that pedometer on your iPhone.)\u003c/em>\u003c/p>\n\u003cp>\u003cem>Nice summary of the FDA vs. 23andMe\u003c/em>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/VZXDtTNqDuQ'\n title='//www.youtube.com/embed/VZXDtTNqDuQ'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/science/11810/consumer-genetic-testing-company-23andme-faces-its-own-test-from-the-fda","authors":["6177"],"categories":["science_30","science_39"],"tags":["science_304","science_1050","science_5181"],"label":"science"},"science_9885":{"type":"posts","id":"science_9885","meta":{"index":"posts_1591205157","site":"science","id":"9885","score":null,"sort":[1381538235000]},"guestAuthors":[],"slug":"should-every-newborn-undergo-genetic-testing","title":"Should Every Newborn Undergo Genetic Testing?","publishDate":1381538235,"format":"aside","headTitle":"Should Every Newborn Undergo Genetic Testing? | KQED","labelTerm":{"site":"science"},"content":"\u003cdiv class=\"audio-wrap\">\n\u003ch2>Listen:\u003c/h2>\n\u003cp>http://www.kqed.org/.stream/anon/radio/science/2013/10/2013-10-14-science.mp3\u003c/p>\n\u003c/div>\n\u003cfigure id=\"attachment_9975\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/10/Phenylketonuria_testing.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/10/Phenylketonuria_testing.jpg\" alt=\"At birth, every infant in the US and many other countries undergoes a blood test to detect rare newborn diseases that are treatable if caught quickly. (U.S. Air Force Staff Sgt. Eric T. Sheler/Wikimedia Commons)\" width=\"640\" height=\"360\" class=\"size-full wp-image-9975\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">At birth, every infant in the US and many other countries undergoes a blood test to detect rare newborn diseases that are treatable if caught quickly. (U.S. Air Force Staff Sgt. Eric T. Sheler/Wikimedia Commons)\u003c/figcaption>\u003c/figure>\n\u003cp>When a new baby is born, anything seems possible. But we now know that this potential comes with an asterisk. Written into an infant’s DNA are instructions that may make her more vulnerable than other people are to cancer, for instance, or Alzheimer’s disease.\u003c/p>\n\u003cp>So how much of that information should parents be given when their baby is born?\u003c/p>\n\u003cp>The National Institutes of Health has launched a five-year, $25 million effort to explore this question. Researchers at the University of California-San Francisco and three other sites will receive NIH funds to tackle some of the issues that could arise, should genetic testing become routine for each of the roughly four million babies born every year in the United States.\u003c/p>\n\u003caside class=\"pullquote alignleft\">\nJust because we have the technology to tell parents about diseases their children might face decades down the line, does that mean we should use it?\u003c/aside>\n\u003cp>At UCSF, researchers will focus on a relatively straightforward question: Are genetic tests more effective than the standard blood screening tests newborns currently get?\u003c/p>\n\u003cp>Barbara Koenig is a UCSF bioethicist. She says when the routine blood test became standard in the 1960s, it seemed like magic.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“There are a couple rare conditions — like PKU and genetic hypothyroidism — that, if you identified them early, you could do an immediate intervention with the infant and prevent a life of terrible suffering, or mental retardation.”\u003c/p>\n\u003cp>PKU is a rare metabolic disorder that, unless treated with a special diet, can lead to mental retardation. Congenital hypothyroidism, caused by an under-active thyroid, can also lead to developmental delays unless treated early on with medication. So tests like this provide a clear and obvious public health benefit, says Koenig.\u003c/p>\n\u003cp>“Someone comes in and does a little heel stick on the baby, takes the blood. Then you don’t\u003cbr>\nhear about it anymore, unless there’s a positive result.”\u003c/p>\n\u003cp>But these tests aren’t perfect. Sometimes there are false positives. And today, says UCSF geneticist Bob Nussbaum, there’s a technology that may be able to do a much better job: genetic testing.\u003c/p>\n\u003cp>“Could it possibly replace our current system?” Nussbaum says his study is asking. “Does it have added value above what we’re doing, providing information that’s useful and important?”\u003c/p>\n\u003cfigure id=\"attachment_9892\" class=\"wp-caption alignleft\" style=\"max-width: 163px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/10/Nussbaum-163x162.jpg\" rel=\"attachment wp-att-9892\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-9892\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/10/Nussbaum-163x162.jpg\" alt=\"Geneticist Robert Nussbaum heads UCSFs $4.5 million newborn screening pilot study. \" width=\"163\" height=\"162\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Geneticist Robert Nussbaum heads UCSFs $4.5 million newborn screening pilot study. (Holly Smith)\u003c/figcaption>\u003c/figure>\n\u003cp>Over the next five years, Nussbaum, Koenig and others on the team will study the potential of exome testing, which focuses on the two percent of genes that are used as blueprints for the production of proteins. These tests currently cost researchers about $700 apiece.\u003c/p>\n\u003cp>Working with 1,400 blood samples archived in the state’s Department of Public Health, researchers will see whether exome testing does a better job predicting newborn illnesses than the current biochemical tests do.\u003c/p>\n\u003cp>Meanwhile, a second project will offer genetic testing to families whose children have already been diagnosed with an immune disorder, to see whether the genetic tests shed further light on their conditions.\u003c/p>\n\u003cp>But the implications of these questions can be thorny. Researchers at UCSF and the other sites – Brigham and Women’s Hospital in Boston, Children’s Mercy Hospital in Kansas City, and the University of North Carolina at Chapel Hill – are asking: Just because we have the technology to tell parents about diseases their babies might one day get, does that mean we should use it?\u003c/p>\n\u003cp>Many researchers are ambivalent, at best.\u003c/p>\n\u003cp>“What possible value is there in knowing that piece of information now?” asks UCSF’s Nussbaum.\u003c/p>\n\u003cfigure id=\"attachment_9891\" class=\"wp-caption alignright\" style=\"max-width: 107px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/10/Koenig-107x162.jpg\" rel=\"attachment wp-att-9891\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-9891\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/10/Koenig-107x162.jpg\" alt='UCSF bioethicist Barbara Koenig calls the desire to have as much information as possible a \"distinctly American bias.\"' width=\"107\" height=\"162\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">UCSF bioethicist Barbara Koenig calls the desire to have as much information as possible a “distinctly American bias.” (Courtesy of the Mayo Clinic)\u003c/figcaption>\u003c/figure>\n\u003cp>Take, for example, he says, a gene called ApoE, some variants of which indicate an increased risk for Alzheimer’s disease.\u003c/p>\n\u003cp>“I think there’s actually greater harm than good to be telling parents that a child has a three- or four-fold increased risk for a late-onset disorder for which we currently have no therapy.”\u003c/p>\n\u003cp>As a doctor, this puts Nussbaum in a bind. On the one hand, he knows it can sound patronizing to deprive a parent of medical information about his or her child.\u003c/p>\n\u003cp>On the other hand, this information can alter the course of a child’s life in many ways, including changing the way he or she is parented.\u003c/p>\n\u003cp>In fact, there’s a whole body of literature on this phenomenon: it’s called Vulnerable Child Syndrome.\u003c/p>\n\u003cp>Parents of these children, says Nussbaum “are perhaps afraid to institute the same level of discipline. They may treat one of those children differently than the siblings. You’ve introduced a psychological issue.”\u003c/p>\n\u003cp>There’s a term bioethicists often use to describe what these children have lost: “open future.” It refers to a person’s right \u003cem>not\u003c/em> to know how his or her genes might impact a life.\u003c/p>\n\u003cp>To underscore this concern, Koenig and Nussbaum point to studies done in Ireland and the United Kingdom on people at risk for Huntington’s disease, a fatal neurodegenerative disorder.\u003c/p>\n\u003cp>When subjects learned that the presence of a specific gene would indicate that they would inescapably come down with the disease, most declined to take the test.\u003c/p>\n\u003caside class=\"pullquote alignleft\">Bioethicists use the term “open future” to describe a child’s right \u003cem>not\u003c/em> to know how genes might impact his or her life.\u003c/aside>\n\u003cp>So, the logic goes, if adults often choose not to know what their genes might say about their future, what right do parents, or doctors, have to make that choice for newborns?\u003c/p>\n\u003cp>That’s a concern shared by Jonathan Berg, a geneticist at the University of North Carolina School of Medicine, whose NIH funds will explore how best to explain the implications of genetic tests to diverse populations.\u003c/p>\n\u003cp>Berg says he values the choice he has, as an adult, to decide whether to undergo genetic testing — to know, for example, his ApoE status.\u003c/p>\n\u003cp>“But if you imagine a generation of children whose parents decide that for them, then those children no longer have the right to an open future. They won’t have the ability, as I do, to value the fact that I get to decide that information for myself.”\u003c/p>\n\u003cp>These are not hypothetical concerns, because infant genetic testing is already happening in a limited way, not as a public health venture, but as a commercial one.\u003c/p>\n\u003cp>Catherine Afarian works at a company called 23andMe, based in Mountain View, Califonia. For $100, the company will test for a list of genetic signatures that can provide information about a person’s ancestry and health risks.\u003c/p>\n\u003cp>Afarian bought one for Hudson when he was eight months old.\u003c/p>\n\u003cfigure id=\"attachment_9893\" class=\"wp-caption alignnone\" style=\"max-width: 1538px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/10/Afarian-Family.jpg\" rel=\"attachment wp-att-9893\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-9893\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/10/Afarian-Family.jpg\" alt=\"Chris and Catherine Afarian bought a 23andMe screening test for their son Hudson when he was eight months old. \" width=\"1538\" height=\"1022\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">If there’s information out there about her son’s health, Afarian says she wants to have it, even if it’s worrisome. (Jonathan Payne)\u003c/figcaption>\u003c/figure>\n\u003cp>She learned that Hudson, like herself, has an increased sensitivity for a blood thinner called Warfarin, which is prescribed to prevent blood clots.\u003c/p>\n\u003cp>According to the test, Hudson is also a “slow metabolizer of caffeine, as am I,” she says.\u003c/p>\n\u003cp>Some more serious things came up, too.\u003c/p>\n\u003cp>According to his 23andMe test, Hudson has an increased risk for Parkinson’s disease. This is also not a surprise, as at least one member of Afarian’s family has had Parkinson’s. Afarian says having the information about Hudson’s risk will help her focus her concerns in the future.\u003c/p>\n\u003cp>“I’m going to pay attention to the studies that come out about Parkinson’s,” she says. And when her family can afford to make some charitable contributions, “I want to put money into Parkinson’s research.\u003c/p>\n\u003cp>“My son is only two and a half. Who knows what kinds of opportunities and treatments are going to be there when he’s 30, 40, 50, right?”\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>Will a majority of parents feel the way Afarian does? That’s just one of many questions the NIH hopes to answer over the next five years. Even then, it could take much longer to sort out whether society at large will benefit from knowing what’s in our children’s genes.\u003c/p>\n\n","blocks":[],"excerpt":"The NIH has launched a five-year, $25 million dollar effort to explore what may be one of the great ethical dilemmas of the 21st century: Just because we can do genetic testing on infants, should we?","status":"publish","parent":0,"modified":1704934895,"stats":{"hasAudio":true,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":41,"wordCount":1481},"headData":{"title":"Should Every Newborn Undergo Genetic Testing? | KQED","description":"The NIH has launched a five-year, $25 million dollar effort to explore what may be one of the great ethical dilemmas of the 21st century: Just because we can do genetic testing on infants, should we?","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Should Every Newborn Undergo Genetic Testing?","datePublished":"2013-10-12T00:37:15.000Z","dateModified":"2024-01-11T01:01:35.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"audioUrl":"http://www.kqed.org/.stream/anon/radio/science/2013/10/2013-10-14-science.mp3","sticky":false,"path":"/science/9885/should-every-newborn-undergo-genetic-testing","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cdiv class=\"audio-wrap\">\n\u003ch2>Listen:\u003c/h2>\n\u003cp>http://www.kqed.org/.stream/anon/radio/science/2013/10/2013-10-14-science.mp3\u003c/p>\n\u003c/div>\n\u003cfigure id=\"attachment_9975\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/10/Phenylketonuria_testing.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/10/Phenylketonuria_testing.jpg\" alt=\"At birth, every infant in the US and many other countries undergoes a blood test to detect rare newborn diseases that are treatable if caught quickly. (U.S. Air Force Staff Sgt. Eric T. Sheler/Wikimedia Commons)\" width=\"640\" height=\"360\" class=\"size-full wp-image-9975\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">At birth, every infant in the US and many other countries undergoes a blood test to detect rare newborn diseases that are treatable if caught quickly. (U.S. Air Force Staff Sgt. Eric T. Sheler/Wikimedia Commons)\u003c/figcaption>\u003c/figure>\n\u003cp>When a new baby is born, anything seems possible. But we now know that this potential comes with an asterisk. Written into an infant’s DNA are instructions that may make her more vulnerable than other people are to cancer, for instance, or Alzheimer’s disease.\u003c/p>\n\u003cp>So how much of that information should parents be given when their baby is born?\u003c/p>\n\u003cp>The National Institutes of Health has launched a five-year, $25 million effort to explore this question. Researchers at the University of California-San Francisco and three other sites will receive NIH funds to tackle some of the issues that could arise, should genetic testing become routine for each of the roughly four million babies born every year in the United States.\u003c/p>\n\u003caside class=\"pullquote alignleft\">\nJust because we have the technology to tell parents about diseases their children might face decades down the line, does that mean we should use it?\u003c/aside>\n\u003cp>At UCSF, researchers will focus on a relatively straightforward question: Are genetic tests more effective than the standard blood screening tests newborns currently get?\u003c/p>\n\u003cp>Barbara Koenig is a UCSF bioethicist. She says when the routine blood test became standard in the 1960s, it seemed like magic.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“There are a couple rare conditions — like PKU and genetic hypothyroidism — that, if you identified them early, you could do an immediate intervention with the infant and prevent a life of terrible suffering, or mental retardation.”\u003c/p>\n\u003cp>PKU is a rare metabolic disorder that, unless treated with a special diet, can lead to mental retardation. Congenital hypothyroidism, caused by an under-active thyroid, can also lead to developmental delays unless treated early on with medication. So tests like this provide a clear and obvious public health benefit, says Koenig.\u003c/p>\n\u003cp>“Someone comes in and does a little heel stick on the baby, takes the blood. Then you don’t\u003cbr>\nhear about it anymore, unless there’s a positive result.”\u003c/p>\n\u003cp>But these tests aren’t perfect. Sometimes there are false positives. And today, says UCSF geneticist Bob Nussbaum, there’s a technology that may be able to do a much better job: genetic testing.\u003c/p>\n\u003cp>“Could it possibly replace our current system?” Nussbaum says his study is asking. “Does it have added value above what we’re doing, providing information that’s useful and important?”\u003c/p>\n\u003cfigure id=\"attachment_9892\" class=\"wp-caption alignleft\" style=\"max-width: 163px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/10/Nussbaum-163x162.jpg\" rel=\"attachment wp-att-9892\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-9892\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/10/Nussbaum-163x162.jpg\" alt=\"Geneticist Robert Nussbaum heads UCSFs $4.5 million newborn screening pilot study. \" width=\"163\" height=\"162\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Geneticist Robert Nussbaum heads UCSFs $4.5 million newborn screening pilot study. (Holly Smith)\u003c/figcaption>\u003c/figure>\n\u003cp>Over the next five years, Nussbaum, Koenig and others on the team will study the potential of exome testing, which focuses on the two percent of genes that are used as blueprints for the production of proteins. These tests currently cost researchers about $700 apiece.\u003c/p>\n\u003cp>Working with 1,400 blood samples archived in the state’s Department of Public Health, researchers will see whether exome testing does a better job predicting newborn illnesses than the current biochemical tests do.\u003c/p>\n\u003cp>Meanwhile, a second project will offer genetic testing to families whose children have already been diagnosed with an immune disorder, to see whether the genetic tests shed further light on their conditions.\u003c/p>\n\u003cp>But the implications of these questions can be thorny. Researchers at UCSF and the other sites – Brigham and Women’s Hospital in Boston, Children’s Mercy Hospital in Kansas City, and the University of North Carolina at Chapel Hill – are asking: Just because we have the technology to tell parents about diseases their babies might one day get, does that mean we should use it?\u003c/p>\n\u003cp>Many researchers are ambivalent, at best.\u003c/p>\n\u003cp>“What possible value is there in knowing that piece of information now?” asks UCSF’s Nussbaum.\u003c/p>\n\u003cfigure id=\"attachment_9891\" class=\"wp-caption alignright\" style=\"max-width: 107px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/10/Koenig-107x162.jpg\" rel=\"attachment wp-att-9891\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-9891\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/10/Koenig-107x162.jpg\" alt='UCSF bioethicist Barbara Koenig calls the desire to have as much information as possible a \"distinctly American bias.\"' width=\"107\" height=\"162\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">UCSF bioethicist Barbara Koenig calls the desire to have as much information as possible a “distinctly American bias.” (Courtesy of the Mayo Clinic)\u003c/figcaption>\u003c/figure>\n\u003cp>Take, for example, he says, a gene called ApoE, some variants of which indicate an increased risk for Alzheimer’s disease.\u003c/p>\n\u003cp>“I think there’s actually greater harm than good to be telling parents that a child has a three- or four-fold increased risk for a late-onset disorder for which we currently have no therapy.”\u003c/p>\n\u003cp>As a doctor, this puts Nussbaum in a bind. On the one hand, he knows it can sound patronizing to deprive a parent of medical information about his or her child.\u003c/p>\n\u003cp>On the other hand, this information can alter the course of a child’s life in many ways, including changing the way he or she is parented.\u003c/p>\n\u003cp>In fact, there’s a whole body of literature on this phenomenon: it’s called Vulnerable Child Syndrome.\u003c/p>\n\u003cp>Parents of these children, says Nussbaum “are perhaps afraid to institute the same level of discipline. They may treat one of those children differently than the siblings. You’ve introduced a psychological issue.”\u003c/p>\n\u003cp>There’s a term bioethicists often use to describe what these children have lost: “open future.” It refers to a person’s right \u003cem>not\u003c/em> to know how his or her genes might impact a life.\u003c/p>\n\u003cp>To underscore this concern, Koenig and Nussbaum point to studies done in Ireland and the United Kingdom on people at risk for Huntington’s disease, a fatal neurodegenerative disorder.\u003c/p>\n\u003cp>When subjects learned that the presence of a specific gene would indicate that they would inescapably come down with the disease, most declined to take the test.\u003c/p>\n\u003caside class=\"pullquote alignleft\">Bioethicists use the term “open future” to describe a child’s right \u003cem>not\u003c/em> to know how genes might impact his or her life.\u003c/aside>\n\u003cp>So, the logic goes, if adults often choose not to know what their genes might say about their future, what right do parents, or doctors, have to make that choice for newborns?\u003c/p>\n\u003cp>That’s a concern shared by Jonathan Berg, a geneticist at the University of North Carolina School of Medicine, whose NIH funds will explore how best to explain the implications of genetic tests to diverse populations.\u003c/p>\n\u003cp>Berg says he values the choice he has, as an adult, to decide whether to undergo genetic testing — to know, for example, his ApoE status.\u003c/p>\n\u003cp>“But if you imagine a generation of children whose parents decide that for them, then those children no longer have the right to an open future. They won’t have the ability, as I do, to value the fact that I get to decide that information for myself.”\u003c/p>\n\u003cp>These are not hypothetical concerns, because infant genetic testing is already happening in a limited way, not as a public health venture, but as a commercial one.\u003c/p>\n\u003cp>Catherine Afarian works at a company called 23andMe, based in Mountain View, Califonia. For $100, the company will test for a list of genetic signatures that can provide information about a person’s ancestry and health risks.\u003c/p>\n\u003cp>Afarian bought one for Hudson when he was eight months old.\u003c/p>\n\u003cfigure id=\"attachment_9893\" class=\"wp-caption alignnone\" style=\"max-width: 1538px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/10/Afarian-Family.jpg\" rel=\"attachment wp-att-9893\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-9893\" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/10/Afarian-Family.jpg\" alt=\"Chris and Catherine Afarian bought a 23andMe screening test for their son Hudson when he was eight months old. \" width=\"1538\" height=\"1022\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">If there’s information out there about her son’s health, Afarian says she wants to have it, even if it’s worrisome. (Jonathan Payne)\u003c/figcaption>\u003c/figure>\n\u003cp>She learned that Hudson, like herself, has an increased sensitivity for a blood thinner called Warfarin, which is prescribed to prevent blood clots.\u003c/p>\n\u003cp>According to the test, Hudson is also a “slow metabolizer of caffeine, as am I,” she says.\u003c/p>\n\u003cp>Some more serious things came up, too.\u003c/p>\n\u003cp>According to his 23andMe test, Hudson has an increased risk for Parkinson’s disease. This is also not a surprise, as at least one member of Afarian’s family has had Parkinson’s. Afarian says having the information about Hudson’s risk will help her focus her concerns in the future.\u003c/p>\n\u003cp>“I’m going to pay attention to the studies that come out about Parkinson’s,” she says. And when her family can afford to make some charitable contributions, “I want to put money into Parkinson’s research.\u003c/p>\n\u003cp>“My son is only two and a half. Who knows what kinds of opportunities and treatments are going to be there when he’s 30, 40, 50, right?”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Will a majority of parents feel the way Afarian does? That’s just one of many questions the NIH hopes to answer over the next five years. Even then, it could take much longer to sort out whether society at large will benefit from knowing what’s in our children’s genes.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/science/9885/should-every-newborn-undergo-genetic-testing","authors":["210"],"categories":["science_46","science_30","science_39","science_40","science_43"],"tags":["science_304","science_305","science_64","science_813"],"featImg":"science_9975","label":"science"},"science_8167":{"type":"posts","id":"science_8167","meta":{"index":"posts_1591205157","site":"science","id":"8167","score":null,"sort":[1379027109000]},"guestAuthors":[],"slug":"click-to-like-my-genome-home-genetic-testing-goes-social","title":"Click to “Like” My Genome: Home Genetic Testing Goes Social","publishDate":1379027109,"format":"aside","headTitle":"Click to “Like” My Genome: Home Genetic Testing Goes Social | KQED","labelTerm":{"site":"science"},"content":"\u003cfigure id=\"attachment_8176\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/09/Pitfall_Atari.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-8176 \" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/09/Pitfall_Atari.jpg\" alt=\"With personalized genomics, pitfalls in our imagination become real insights into threats to our health.\" width=\"640\" height=\"360\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">With personalized genomics, imagined dangers could become real insights about our health. (Image: Activision)\u003c/figcaption>\u003c/figure>\n\u003cp>Remember the Activision game \u003ca href=\"http://www.youtube.com/watch?v=MhXMYw1lXY0\">Pitfall!\u003c/a>, back in the ‘80s? Your guy ran through a blocky two-dimensional jungle, swinging on a vine of pixels over alligator-infested bogs. Was he running toward or away from something? You didn’t care. Sometimes the chasms disappeared and reappeared beneath your feet. If you fell into quicksand or landed on a rattlesnake, you died. No big deal. It was just a game, lived in the moment. You were evading or finding peril as it scrolled across the screen.\u003c/p>\n\u003cp>Fast forward 20 years, to when we first heard it was possible for people to sequence their genomes. I was intrigued. This was around the time that the \u003ca href=\"http://www.genome.gov/10001772\">Human Genome Project\u003c/a> was nearing completion. Soon, I imagined, we all might be offered a chance to run through life with a new ability to sense what dangers lay ahead, lurking in our genes.\u003c/p>\n\u003cp>But with its six-digit price point, genetic testing was a high-end game out of reach for most of us. In some ways, this is still the case. \u003cem>Whole genome\u003c/em> sequencing, which spells out all six billion letters of a person’s DNA, is still prohibitively expensive and has to be ordered by a doctor. But now it is possible to order a genetic scan of nearly a million key spots on one’s DNA for only $99 from \u003ca href=\"http://www.23andme.com/\">23andMe\u003c/a>, a Mountain View company co-founded by Anne Wojcicki, a biotech investor on the Google family tree.\u003c/p>\n\u003cp>Finally, personalized genomics was a game I could afford. The $99 is one tenth of what the test originally cost when the company began offering it in 2007. Curiosity lured me in: I wanted to learn more about my heredity and my health. But I didn’t expect to find a whole new breed of social network, an online community structured not around shared interests, physical proximity, or social relationships, but around bits of shared DNA.\u003c/p>\n\u003caside class=\"pullquote alignleft\">I wanted to learn more about my heredity and my health. But I didn’t expect to find a whole new breed of social network.\u003c/aside>\n\u003cp>Grabbing the rope was simple. I visited the company’s website, clicked on the huge green invitation to “Get to Know You,” paid up and became a member. A few days later, the smartly-packaged kit was waiting when I returned home from work. Inside were a tiny plastic vial and a smaller box to return the sealed saliva sample.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>I spat. As I held the sample, I felt oddly protective. Then I felt a flutter of anxiety. Should I be sending these defenseless drops of myself into the clutches of faceless white coats? I have often worked as a freelancer or in other nontraditional modes, and, like so many of my fellow Americans, am used to taking a DIY approach to health care to the degree that I can. But still I worried, could my results be used to deny me health coverage, or otherwise discriminate against me?\u003c/p>\n\u003cp>But I didn’t worry that much, and I slid the package into the corner mailbox the next morning. An existing law known as the \u003ca href=\"http://www.eeoc.gov/laws/statutes/gina.cfm\">Genetic Information Nondiscrimination Act\u003c/a> (GINA), signed by \u003ca href=\"http://www.wired.com/wiredscience/2008/05/the-genetic-inf/\">George W. Bush in 2008\u003c/a> protects Americans against discrimination based on genetic information. The law is far from iron-clad; it doesn’t cover long-term health, life or disability insurance. But there’s also \u003ca href=\"http://www.kqed.org/news/health/obamacare/obamacare-guide.jsp\">Obama’s health care law\u003c/a>, coming into effect in 2014, which should moot the point, because even if loopholes currently exist in the GINA law, the president’s healthcare act aims to further limit discrimination based on preexisting conditions. We’ll have to wait to see how well it works.\u003c/p>\n\u003cp>But my willingness to outsource my data goes beyond feeling secure about privacy protections; it’s also about a new way of moving in the world. I’ve never been as protective of my identity as some people, but I now care even less. I sometimes make long personal phone calls on busy city streets, an activity I once found tacky and embarrassing. I’ve gone on internet dates. I post updates and pictures of myself on Facebook, to be perused by friends and “friends” alike. Curating my public persona seems like a lot of trouble, and ultimately pointless.\u003c/p>\n\u003cp>In short, I’m of the world. And the world is not in a very private mood.\u003c/p>\n\u003cp>But not everyone shares (or can afford to share) this devil-may-care attitude when it comes to his or her genetic information. Some people have good reason to believe that they might be prone to certain illnesses, including incapacitating, contagious and/or fatal ones. Or they may carry mutations that might affect potential offspring. Or maybe they merely chafe at the image of their precious DNA shelved in a vault somewhere, as in the final sequence of \u003cem>Raiders of the Lost Ark.\u003c/em>\u003c/p>\n\u003cfigure id=\"attachment_8172\" class=\"wp-caption alignright\" style=\"max-width: 288px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/09/raiders_of_the_lost_ark2-e1378511556309-288x162.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-8172 \" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/09/raiders_of_the_lost_ark2-e1378511556309-288x162.jpg\" alt=\"Genetic samples sent by 23andMe customers can be stored indefinitely to be studied by scientists.\" width=\"288\" height=\"162\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">\u003ca href=\"http://second-reel.blogspot.com/2010/07/homage-reference-and-free-association.html\">Genetic samples sent by 23andMe customers can be stored indefinitely to be studied by scientists. \u003c/a>\u003cbr>(Image: Lucasfilm)\u003c/figcaption>\u003c/figure>\n\u003cp>To assuage these fears, 23andMe offers a menu of fates for both your physical sample and your data. On the conservative end, you can choose to have both destroyed after you receive your results. On the other end of the spectrum, you can allow the company to keep your DNA and study it ad infinitum.\u003c/p>\n\u003cp>While 23andMe offers privacy options, the company regularly hints that it would be \u003ca href=\"https://www.23andme.com/about/values/\">noble of you to reveal all (in the interest of science)\u003c/a>, and it uses an enticing interface to hustle users for more information. For example, with a feature called “Quick Questions,” you can deliver substantial amounts of self-reported data on the web site before your saliva sample has even arrived at the lab. The more data 23andMe accumulates and can correlate with customers’ self-reported info, the deeper the ocean from which it can fish for new drugs and treatments. Using this “Aggregated Genetic and Self-Reported Information,” the company contributes to \u003ca href=\"https://www.23andme.com/for/scientists/\">papers in peer-reviewed journals\u003c/a>, and in theory could work with third parties to market new drugs.\u003c/p>\n\u003cp>It runs a good game, too. You may be made of stronger stuff, but when someone asks me a simple personal question with the promised reward of better self-understanding, I respond like a rat tapping a lever, or a teenager hitting ‘Start’ on a faux-wood-paneled game console.\u003c/p>\n\u003cp>For example:\u003c/p>\n\u003cp>\u003cstrong>\u003cem>How would you describe your current weight?\u003c/em>\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>\u003cem>When you travel, do you prefer your itinerary to be planned in advance or spontaneous?\u003c/em>\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>\u003cem>Do you cry easily?\u003c/em>\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>\u003cem>Do you have stretch marks on your hips, thighs, or backs of your arms?\u003c/em>\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>\u003cem>When you’re in the mood for a snack, what kind of snack do you usually reach for?\u003c/em>\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>As I waited for my results, I kept coming back to the site to answer questions and explore research on genetically influenced traits such as hair curliness, shyness and the tendency to create systems out of chaos. I found it irresistible.\u003c/p>\n\u003cp>23andMe also hosts a copious amount of (over)sharing: every trait, ancestry query or medical pitfall has its own group in which customers can discuss it. In hundreds of forums, seekers like me reach out to each other to fill in the gaps of their genetic stories.\u003c/p>\n\u003cfigure id=\"attachment_8173\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/09/23me-2-compressed-e1378836487128.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-8173 \" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/09/23me-2-compressed-e1378836487128.jpg\" alt=\"23me-2-compressed\" width=\"640\" height=\"421\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">23andMe customers gather in forums to discuss everything from shared genetic mutations to the search for long-lost family. (Arwen Curry/KQED)\u003c/figcaption>\u003c/figure>\n\u003cp>I realized that once my results were in, I would be able to see — and chat with — people genetically related to me around the world who had also taken the test. At first, I scoffed at this. Don’t people have enough “friends” without having “family,” too? But it was clear this was no fringe activity. These networks were overflowing with posts, comments and discussions, connecting people around the world by their genes.\u003c/p>\n\u003cp>Just as I was beginning to get saturated with other people’s data, an email arrived:\u003c/p>\n\u003cblockquote>\u003cp>Dear Arwen,\u003c/p>\n\u003cp>Your 23andMe results are now available!\u003c/p>\n\u003cp>>Log in now to view your results and start personalizing your 23andMe experience.\u003c/p>\u003c/blockquote>\n\u003cp>Ready to swing out over the abyss, I wondered, if I \u003cem>did\u003c/em> have a trait, mutation or disease, would I reach out to this group of online strangers to talk about it? If I learned I had distant cousins, would I want to talk to them, even expand what I thought of as family?\u003c/p>\n\u003cp>Have you taken the spit test? If you could be part of a community based on your DNA would you join? Add your thoughts to the comments below.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>In my next post, I will share some of my test results and introduce you to some of the people I met along the way. Stay tuned.\u003c/p>\n\n","blocks":[],"excerpt":"Before gene sequencing, life was a like a video game: you’d run along, dealing with obstacles as they came up. Now we can learn more about what genetic dangers may lay ahead. KQED Science producer Arwen Curry decided to get in the game.\r\n","status":"publish","parent":0,"modified":1704935070,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":31,"wordCount":1507},"headData":{"title":"Click to “Like” My Genome: Home Genetic Testing Goes Social | KQED","description":"Before gene sequencing, life was a like a video game: you’d run along, dealing with obstacles as they came up. Now we can learn more about what genetic dangers may lay ahead. KQED Science producer Arwen Curry decided to get in the game.\r\n","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Click to “Like” My Genome: Home Genetic Testing Goes Social","datePublished":"2013-09-12T23:05:09.000Z","dateModified":"2024-01-11T01:04:30.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"sticky":false,"path":"/science/8167/click-to-like-my-genome-home-genetic-testing-goes-social","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cfigure id=\"attachment_8176\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/09/Pitfall_Atari.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-8176 \" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/09/Pitfall_Atari.jpg\" alt=\"With personalized genomics, pitfalls in our imagination become real insights into threats to our health.\" width=\"640\" height=\"360\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">With personalized genomics, imagined dangers could become real insights about our health. (Image: Activision)\u003c/figcaption>\u003c/figure>\n\u003cp>Remember the Activision game \u003ca href=\"http://www.youtube.com/watch?v=MhXMYw1lXY0\">Pitfall!\u003c/a>, back in the ‘80s? Your guy ran through a blocky two-dimensional jungle, swinging on a vine of pixels over alligator-infested bogs. Was he running toward or away from something? You didn’t care. Sometimes the chasms disappeared and reappeared beneath your feet. If you fell into quicksand or landed on a rattlesnake, you died. No big deal. It was just a game, lived in the moment. You were evading or finding peril as it scrolled across the screen.\u003c/p>\n\u003cp>Fast forward 20 years, to when we first heard it was possible for people to sequence their genomes. I was intrigued. This was around the time that the \u003ca href=\"http://www.genome.gov/10001772\">Human Genome Project\u003c/a> was nearing completion. Soon, I imagined, we all might be offered a chance to run through life with a new ability to sense what dangers lay ahead, lurking in our genes.\u003c/p>\n\u003cp>But with its six-digit price point, genetic testing was a high-end game out of reach for most of us. In some ways, this is still the case. \u003cem>Whole genome\u003c/em> sequencing, which spells out all six billion letters of a person’s DNA, is still prohibitively expensive and has to be ordered by a doctor. But now it is possible to order a genetic scan of nearly a million key spots on one’s DNA for only $99 from \u003ca href=\"http://www.23andme.com/\">23andMe\u003c/a>, a Mountain View company co-founded by Anne Wojcicki, a biotech investor on the Google family tree.\u003c/p>\n\u003cp>Finally, personalized genomics was a game I could afford. The $99 is one tenth of what the test originally cost when the company began offering it in 2007. Curiosity lured me in: I wanted to learn more about my heredity and my health. But I didn’t expect to find a whole new breed of social network, an online community structured not around shared interests, physical proximity, or social relationships, but around bits of shared DNA.\u003c/p>\n\u003caside class=\"pullquote alignleft\">I wanted to learn more about my heredity and my health. But I didn’t expect to find a whole new breed of social network.\u003c/aside>\n\u003cp>Grabbing the rope was simple. I visited the company’s website, clicked on the huge green invitation to “Get to Know You,” paid up and became a member. A few days later, the smartly-packaged kit was waiting when I returned home from work. Inside were a tiny plastic vial and a smaller box to return the sealed saliva sample.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>I spat. As I held the sample, I felt oddly protective. Then I felt a flutter of anxiety. Should I be sending these defenseless drops of myself into the clutches of faceless white coats? I have often worked as a freelancer or in other nontraditional modes, and, like so many of my fellow Americans, am used to taking a DIY approach to health care to the degree that I can. But still I worried, could my results be used to deny me health coverage, or otherwise discriminate against me?\u003c/p>\n\u003cp>But I didn’t worry that much, and I slid the package into the corner mailbox the next morning. An existing law known as the \u003ca href=\"http://www.eeoc.gov/laws/statutes/gina.cfm\">Genetic Information Nondiscrimination Act\u003c/a> (GINA), signed by \u003ca href=\"http://www.wired.com/wiredscience/2008/05/the-genetic-inf/\">George W. Bush in 2008\u003c/a> protects Americans against discrimination based on genetic information. The law is far from iron-clad; it doesn’t cover long-term health, life or disability insurance. But there’s also \u003ca href=\"http://www.kqed.org/news/health/obamacare/obamacare-guide.jsp\">Obama’s health care law\u003c/a>, coming into effect in 2014, which should moot the point, because even if loopholes currently exist in the GINA law, the president’s healthcare act aims to further limit discrimination based on preexisting conditions. We’ll have to wait to see how well it works.\u003c/p>\n\u003cp>But my willingness to outsource my data goes beyond feeling secure about privacy protections; it’s also about a new way of moving in the world. I’ve never been as protective of my identity as some people, but I now care even less. I sometimes make long personal phone calls on busy city streets, an activity I once found tacky and embarrassing. I’ve gone on internet dates. I post updates and pictures of myself on Facebook, to be perused by friends and “friends” alike. Curating my public persona seems like a lot of trouble, and ultimately pointless.\u003c/p>\n\u003cp>In short, I’m of the world. And the world is not in a very private mood.\u003c/p>\n\u003cp>But not everyone shares (or can afford to share) this devil-may-care attitude when it comes to his or her genetic information. Some people have good reason to believe that they might be prone to certain illnesses, including incapacitating, contagious and/or fatal ones. Or they may carry mutations that might affect potential offspring. Or maybe they merely chafe at the image of their precious DNA shelved in a vault somewhere, as in the final sequence of \u003cem>Raiders of the Lost Ark.\u003c/em>\u003c/p>\n\u003cfigure id=\"attachment_8172\" class=\"wp-caption alignright\" style=\"max-width: 288px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/09/raiders_of_the_lost_ark2-e1378511556309-288x162.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-8172 \" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/09/raiders_of_the_lost_ark2-e1378511556309-288x162.jpg\" alt=\"Genetic samples sent by 23andMe customers can be stored indefinitely to be studied by scientists.\" width=\"288\" height=\"162\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">\u003ca href=\"http://second-reel.blogspot.com/2010/07/homage-reference-and-free-association.html\">Genetic samples sent by 23andMe customers can be stored indefinitely to be studied by scientists. \u003c/a>\u003cbr>(Image: Lucasfilm)\u003c/figcaption>\u003c/figure>\n\u003cp>To assuage these fears, 23andMe offers a menu of fates for both your physical sample and your data. On the conservative end, you can choose to have both destroyed after you receive your results. On the other end of the spectrum, you can allow the company to keep your DNA and study it ad infinitum.\u003c/p>\n\u003cp>While 23andMe offers privacy options, the company regularly hints that it would be \u003ca href=\"https://www.23andme.com/about/values/\">noble of you to reveal all (in the interest of science)\u003c/a>, and it uses an enticing interface to hustle users for more information. For example, with a feature called “Quick Questions,” you can deliver substantial amounts of self-reported data on the web site before your saliva sample has even arrived at the lab. The more data 23andMe accumulates and can correlate with customers’ self-reported info, the deeper the ocean from which it can fish for new drugs and treatments. Using this “Aggregated Genetic and Self-Reported Information,” the company contributes to \u003ca href=\"https://www.23andme.com/for/scientists/\">papers in peer-reviewed journals\u003c/a>, and in theory could work with third parties to market new drugs.\u003c/p>\n\u003cp>It runs a good game, too. You may be made of stronger stuff, but when someone asks me a simple personal question with the promised reward of better self-understanding, I respond like a rat tapping a lever, or a teenager hitting ‘Start’ on a faux-wood-paneled game console.\u003c/p>\n\u003cp>For example:\u003c/p>\n\u003cp>\u003cstrong>\u003cem>How would you describe your current weight?\u003c/em>\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>\u003cem>When you travel, do you prefer your itinerary to be planned in advance or spontaneous?\u003c/em>\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>\u003cem>Do you cry easily?\u003c/em>\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>\u003cem>Do you have stretch marks on your hips, thighs, or backs of your arms?\u003c/em>\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>\u003cem>When you’re in the mood for a snack, what kind of snack do you usually reach for?\u003c/em>\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>As I waited for my results, I kept coming back to the site to answer questions and explore research on genetically influenced traits such as hair curliness, shyness and the tendency to create systems out of chaos. I found it irresistible.\u003c/p>\n\u003cp>23andMe also hosts a copious amount of (over)sharing: every trait, ancestry query or medical pitfall has its own group in which customers can discuss it. In hundreds of forums, seekers like me reach out to each other to fill in the gaps of their genetic stories.\u003c/p>\n\u003cfigure id=\"attachment_8173\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/09/23me-2-compressed-e1378836487128.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-8173 \" src=\"http://ww2.kqed.org/science/wp-content/uploads/sites/35/2013/09/23me-2-compressed-e1378836487128.jpg\" alt=\"23me-2-compressed\" width=\"640\" height=\"421\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">23andMe customers gather in forums to discuss everything from shared genetic mutations to the search for long-lost family. (Arwen Curry/KQED)\u003c/figcaption>\u003c/figure>\n\u003cp>I realized that once my results were in, I would be able to see — and chat with — people genetically related to me around the world who had also taken the test. At first, I scoffed at this. Don’t people have enough “friends” without having “family,” too? But it was clear this was no fringe activity. These networks were overflowing with posts, comments and discussions, connecting people around the world by their genes.\u003c/p>\n\u003cp>Just as I was beginning to get saturated with other people’s data, an email arrived:\u003c/p>\n\u003cblockquote>\u003cp>Dear Arwen,\u003c/p>\n\u003cp>Your 23andMe results are now available!\u003c/p>\n\u003cp>>Log in now to view your results and start personalizing your 23andMe experience.\u003c/p>\u003c/blockquote>\n\u003cp>Ready to swing out over the abyss, I wondered, if I \u003cem>did\u003c/em> have a trait, mutation or disease, would I reach out to this group of online strangers to talk about it? If I learned I had distant cousins, would I want to talk to them, even expand what I thought of as family?\u003c/p>\n\u003cp>Have you taken the spit test? If you could be part of a community based on your DNA would you join? Add your thoughts to the comments below.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>In my next post, I will share some of my test results and introduce you to some of the people I met along the way. Stay tuned.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/science/8167/click-to-like-my-genome-home-genetic-testing-goes-social","authors":["6444"],"categories":["science_30","science_89","science_39"],"tags":["science_304","science_305","science_327","science_5181","science_697"],"featImg":"science_8176","label":"science"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. Possible paints an optimistic portrait of the world we can create through science, policy, business, art and our shared humanity. It asks: What if everything goes right for once? How can we get there? Each episode also includes a short fiction story generated by advanced AI GPT-4, serving as a thought-provoking springboard to speculate how humanity could leverage technology for good.","airtime":"SUN 2pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Possible-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.possible.fm/","meta":{"site":"news","source":"Possible"},"link":"/radio/program/possible","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/possible/id1677184070","spotify":"https://open.spotify.com/show/730YpdUSNlMyPQwNnyjp4k"}},"1a":{"id":"1a","title":"1A","info":"1A is home to the national conversation. 1A brings on great guests and frames the best debate in ways that make you think, share and engage.","airtime":"MON-THU 11pm-12am","imageSrc":"https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/1a.jpg","officialWebsiteLink":"https://the1a.org/","meta":{"site":"news","source":"npr"},"link":"/radio/program/1a","subscribe":{"npr":"https://rpb3r.app.goo.gl/RBrW","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=1188724250&at=11l79Y&ct=nprdirectory","tuneIn":"https://tunein.com/radio/1A-p947376/","rss":"https://feeds.npr.org/510316/podcast.xml"}},"all-things-considered":{"id":"all-things-considered","title":"All Things Considered","info":"Every weekday, \u003cem>All Things Considered\u003c/em> hosts Robert Siegel, Audie Cornish, Ari Shapiro, and Kelly McEvers present the program's trademark mix of news, interviews, commentaries, reviews, and offbeat features. Michel Martin hosts on the weekends.","airtime":"MON-FRI 1pm-2pm, 4:30pm-6:30pm\u003cbr />SAT-SUN 5pm-6pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/All-Things-Considered-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.npr.org/programs/all-things-considered/","meta":{"site":"news","source":"npr"},"link":"/radio/program/all-things-considered"},"american-suburb-podcast":{"id":"american-suburb-podcast","title":"American Suburb: The Podcast","tagline":"The flip side of gentrification, told through one town","info":"Gentrification is changing cities across America, forcing people from neighborhoods they have long called home. Call them the displaced. Now those priced out of the Bay Area are looking for a better life in an unlikely place. American Suburb follows this migration to one California town along the Delta, 45 miles from San Francisco. But is this once sleepy suburb ready for them?","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/American-Suburb-Podcast-Tile-703x703-1.jpg","officialWebsiteLink":"/news/series/american-suburb-podcast","meta":{"site":"news","source":"kqed","order":"13"},"link":"/news/series/american-suburb-podcast/","subscribe":{"npr":"https://rpb3r.app.goo.gl/RBrW","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?mt=2&id=1287748328","tuneIn":"https://tunein.com/radio/American-Suburb-p1086805/","rss":"https://ww2.kqed.org/news/series/american-suburb-podcast/feed/podcast","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkMzMDExODgxNjA5"}},"baycurious":{"id":"baycurious","title":"Bay Curious","tagline":"Exploring the Bay Area, one question at a time","info":"KQED’s new podcast, Bay Curious, gets to the bottom of the mysteries — both profound and peculiar — that give the Bay Area its unique identity. And we’ll do it with your help! You ask the questions. You decide what Bay Curious investigates. And you join us on the journey to find the answers.","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Bay-Curious-Podcast-Tile-703x703-1.jpg","imageAlt":"\"KQED Bay Curious","officialWebsiteLink":"/news/series/baycurious","meta":{"site":"news","source":"kqed","order":"4"},"link":"/podcasts/baycurious","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/bay-curious/id1172473406","npr":"https://www.npr.org/podcasts/500557090/bay-curious","rss":"https://ww2.kqed.org/news/category/bay-curious-podcast/feed/podcast","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93dzIua3FlZC5vcmcvbmV3cy9jYXRlZ29yeS9iYXktY3VyaW91cy1wb2RjYXN0L2ZlZWQvcG9kY2FzdA","stitcher":"https://www.stitcher.com/podcast/kqed/bay-curious","spotify":"https://open.spotify.com/show/6O76IdmhixfijmhTZLIJ8k"}},"bbc-world-service":{"id":"bbc-world-service","title":"BBC World Service","info":"The day's top stories from BBC News compiled twice daily in the week, once at weekends.","airtime":"MON-FRI 9pm-10pm, TUE-FRI 1am-2am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/BBC-World-Service-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.bbc.co.uk/sounds/play/live:bbc_world_service","meta":{"site":"news","source":"BBC World Service"},"link":"/radio/program/bbc-world-service","subscribe":{"apple":"https://itunes.apple.com/us/podcast/global-news-podcast/id135067274?mt=2","tuneIn":"https://tunein.com/radio/BBC-World-Service-p455581/","rss":"https://podcasts.files.bbci.co.uk/p02nq0gn.rss"}},"code-switch-life-kit":{"id":"code-switch-life-kit","title":"Code Switch / Life Kit","info":"\u003cem>Code Switch\u003c/em>, which listeners will hear in the first part of the hour, has fearless and much-needed conversations about race. Hosted by journalists of color, the show tackles the subject of race head-on, exploring how it impacts every part of society — from politics and pop culture to history, sports and more.\u003cbr />\u003cbr />\u003cem>Life Kit\u003c/em>, which will be in the second part of the hour, guides you through spaces and feelings no one prepares you for — from finances to mental health, from workplace microaggressions to imposter syndrome, from relationships to parenting. The show features experts with real world experience and shares their knowledge. 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You can also visit the MindShift website for episodes and supplemental blog posts or tweet us \u003ca href=\"https://twitter.com/MindShiftKQED\">@MindShiftKQED\u003c/a> or visit us at \u003ca href=\"/mindshift\">MindShift.KQED.org\u003c/a>","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Mindshift-Podcast-Tile-703x703-1.jpg","imageAlt":"KQED MindShift: How We Will Learn","officialWebsiteLink":"/mindshift/","meta":{"site":"news","source":"kqed","order":"2"},"link":"/podcasts/mindshift","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/mindshift-podcast/id1078765985","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM1NzY0NjAwNDI5","npr":"https://www.npr.org/podcasts/464615685/mind-shift-podcast","stitcher":"https://www.stitcher.com/podcast/kqed/stories-teachers-share","spotify":"https://open.spotify.com/show/0MxSpNYZKNprFLCl7eEtyx"}},"morning-edition":{"id":"morning-edition","title":"Morning Edition","info":"\u003cem>Morning Edition\u003c/em> takes listeners around the country and the world with multi-faceted stories and commentaries every weekday. Hosts Steve Inskeep, David Greene and Rachel Martin bring you the latest breaking news and features to prepare you for the day.","airtime":"MON-FRI 3am-9am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Morning-Edition-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.npr.org/programs/morning-edition/","meta":{"site":"news","source":"npr"},"link":"/radio/program/morning-edition"},"onourwatch":{"id":"onourwatch","title":"On Our Watch","tagline":"Police secrets, unsealed","info":"For decades, the process for how police police themselves has been inconsistent – if not opaque. In some states, like California, these proceedings were completely hidden. After a new police transparency law unsealed scores of internal affairs files, our reporters set out to examine these cases and the shadow world of police discipline. On Our Watch brings listeners into the rooms where officers are questioned and witnesses are interrogated to find out who this system is really protecting. Is it the officers, or the public they've sworn to serve?","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/On-Our-Watch-Podcast-Tile-703x703-1.jpg","imageAlt":"On Our Watch from NPR and KQED","officialWebsiteLink":"/podcasts/onourwatch","meta":{"site":"news","source":"kqed","order":"1"},"link":"/podcasts/onourwatch","subscribe":{"apple":"https://podcasts.apple.com/podcast/id1567098962","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5ucHIub3JnLzUxMDM2MC9wb2RjYXN0LnhtbD9zYz1nb29nbGVwb2RjYXN0cw","npr":"https://rpb3r.app.goo.gl/onourwatch","spotify":"https://open.spotify.com/show/0OLWoyizopu6tY1XiuX70x","tuneIn":"https://tunein.com/radio/On-Our-Watch-p1436229/","stitcher":"https://www.stitcher.com/show/on-our-watch","rss":"https://feeds.npr.org/510360/podcast.xml"}},"on-the-media":{"id":"on-the-media","title":"On The Media","info":"Our weekly podcast explores how the media 'sausage' is made, casts an incisive eye on fluctuations in the marketplace of ideas, and examines threats to the freedom of information and expression in America and abroad. For one hour a week, the show tries to lift the veil from the process of \"making media,\" especially news media, because it's through that lens that we see the world and the world sees us","airtime":"SUN 2pm-3pm, MON 12am-1am","imageSrc":"https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/onTheMedia.png","officialWebsiteLink":"https://www.wnycstudios.org/shows/otm","meta":{"site":"news","source":"wnyc"},"link":"/radio/program/on-the-media","subscribe":{"apple":"https://itunes.apple.com/us/podcast/on-the-media/id73330715?mt=2","tuneIn":"https://tunein.com/radio/On-the-Media-p69/","rss":"http://feeds.wnyc.org/onthemedia"}},"our-body-politic":{"id":"our-body-politic","title":"Our Body Politic","info":"Presented by KQED, KCRW and KPCC, and created and hosted by award-winning journalist Farai Chideya, Our Body Politic is unapologetically centered on reporting on not just how women of color experience the major political events of today, but how they’re impacting those very issues.","airtime":"SAT 6pm-7pm, SUN 1am-2am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Our-Body-Politic-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://our-body-politic.simplecast.com/","meta":{"site":"news","source":"kcrw"},"link":"/radio/program/our-body-politic","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/our-body-politic/id1533069868","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5zaW1wbGVjYXN0LmNvbS9feGFQaHMxcw","spotify":"https://open.spotify.com/show/4ApAiLT1kV153TttWAmqmc","rss":"https://feeds.simplecast.com/_xaPhs1s","tuneIn":"https://tunein.com/podcasts/News--Politics-Podcasts/Our-Body-Politic-p1369211/"}},"pbs-newshour":{"id":"pbs-newshour","title":"PBS NewsHour","info":"Analysis, background reports and updates from the PBS NewsHour putting today's news in context.","airtime":"MON-FRI 3pm-4pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/PBS-News-Hour-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.pbs.org/newshour/","meta":{"site":"news","source":"pbs"},"link":"/radio/program/pbs-newshour","subscribe":{"apple":"https://itunes.apple.com/us/podcast/pbs-newshour-full-show/id394432287?mt=2","tuneIn":"https://tunein.com/radio/PBS-NewsHour---Full-Show-p425698/","rss":"https://www.pbs.org/newshour/feeds/rss/podcasts/show"}},"perspectives":{"id":"perspectives","title":"Perspectives","tagline":"KQED's series of of daily listener commentaries since 1991","info":"KQED's series of of daily listener commentaries since 1991.","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Perspectives-Podcast-Tile-703x703-1.jpg","officialWebsiteLink":"/perspectives/","meta":{"site":"radio","source":"kqed","order":"15"},"link":"/perspectives","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/id73801135","npr":"https://www.npr.org/podcasts/432309616/perspectives","rss":"https://ww2.kqed.org/perspectives/category/perspectives/feed/","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93dzIua3FlZC5vcmcvcGVyc3BlY3RpdmVzL2NhdGVnb3J5L3BlcnNwZWN0aXZlcy9mZWVkLw"}},"planet-money":{"id":"planet-money","title":"Planet Money","info":"The economy explained. 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