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The program is part of an ongoing collaboration between the \u003ca href=\"http://genetics.stanford.edu/\">Stanford Department of Genetics\u003c/a> and \u003ca href=\"http://www.thetech.org/\">The Tech Museum of Innovation\u003c/a>. Together these two partners created the \u003ca href=\"http://www.thetech.org/exhibits/permanent/index.php?sGalKey=gtwt&galKey=lt\">Genetics: Technology with a Twist\u003c/a> exhibition.\r\n\r\nYou can also see \u003ca href=\"https://ww2.kqed.org/science/author/dr-barry-starr/\">additional posts by Barry at KQED Science\u003c/a>, and read his \u003ca href=\"http://science.kqed.org/quest/author/dr-barry-starr/\">previous contributions\u003c/a> to \u003ca href=\"http://science.kqed.org/quest/\">QUEST\u003c/a>, a project dedicated to exploring the Science of Sustainability.","avatar":"https://secure.gravatar.com/avatar/4a5680e4c642ea0f0f3041af16018969?s=600&d=blank&r=g","twitter":"geneticsboy","facebook":null,"instagram":null,"linkedin":null,"sites":[{"site":"science","roles":["author"]},{"site":"quest","roles":["subscriber"]}],"headData":{"title":"Dr. Barry Starr | KQED","description":null,"ogImgSrc":"https://secure.gravatar.com/avatar/4a5680e4c642ea0f0f3041af16018969?s=600&d=blank&r=g","twImgSrc":"https://secure.gravatar.com/avatar/4a5680e4c642ea0f0f3041af16018969?s=600&d=blank&r=g"},"isLoading":false,"link":"/author/dr-barry-starr"}},"breakingNewsReducer":{},"campaignFinanceReducer":{},"firebase":{"requesting":{},"requested":{},"timestamps":{},"data":{},"ordered":{},"auth":{"isLoaded":false,"isEmpty":true},"authError":null,"profile":{"isLoaded":false,"isEmpty":true},"listeners":{"byId":{},"allIds":[]},"isInitializing":false,"errors":[]},"navBarReducer":{"navBarId":"home","fullView":true,"showPlayer":false},"navMenuReducer":{"menus":[{"key":"menu1","items":[{"name":"News","link":"/","type":"title"},{"name":"Politics","link":"/politics"},{"name":"Science","link":"/science"},{"name":"Education","link":"/educationnews"},{"name":"Housing","link":"/housing"},{"name":"Immigration","link":"/immigration"},{"name":"Criminal Justice","link":"/criminaljustice"},{"name":"Silicon Valley","link":"/siliconvalley"},{"name":"Forum","link":"/forum"},{"name":"The California Report","link":"/californiareport"}]},{"key":"menu2","items":[{"name":"Arts & Culture","link":"/arts","type":"title"},{"name":"Critics’ Picks","link":"/thedolist"},{"name":"Cultural Commentary","link":"/artscommentary"},{"name":"Food & Drink","link":"/food"},{"name":"Bay Area Hip-Hop","link":"/bayareahiphop"},{"name":"Rebel Girls","link":"/rebelgirls"},{"name":"Arts Video","link":"/artsvideos"}]},{"key":"menu3","items":[{"name":"Podcasts","link":"/podcasts","type":"title"},{"name":"Bay Curious","link":"/podcasts/baycurious"},{"name":"Rightnowish","link":"/podcasts/rightnowish"},{"name":"The Bay","link":"/podcasts/thebay"},{"name":"On Our Watch","link":"/podcasts/onourwatch"},{"name":"Mindshift","link":"/podcasts/mindshift"},{"name":"Consider This","link":"/podcasts/considerthis"},{"name":"Political Breakdown","link":"/podcasts/politicalbreakdown"}]},{"key":"menu4","items":[{"name":"Live Radio","link":"/radio","type":"title"},{"name":"TV","link":"/tv","type":"title"},{"name":"Events","link":"/events","type":"title"},{"name":"For Educators","link":"/education","type":"title"},{"name":"Support KQED","link":"/support","type":"title"},{"name":"About","link":"/about","type":"title"},{"name":"Help Center","link":"https://kqed-helpcenter.kqed.org/s","type":"title"}]}]},"pagesReducer":{},"postsReducer":{"stream_live":{"type":"live","id":"stream_live","audioUrl":"https://streams.kqed.org/kqedradio","title":"Live Stream","excerpt":"Live Stream information currently unavailable.","link":"/radio","featImg":"","label":{"name":"KQED Live","link":"/"}},"stream_kqedNewscast":{"type":"posts","id":"stream_kqedNewscast","audioUrl":"https://www.kqed.org/.stream/anon/radio/RDnews/newscast.mp3?_=1","title":"KQED Newscast","featImg":"","label":{"name":"88.5 FM","link":"/"}},"futureofyou_440020":{"type":"posts","id":"futureofyou_440020","meta":{"index":"posts_1591205157","site":"futureofyou","id":"440020","score":null,"sort":[1520362726000]},"guestAuthors":[],"slug":"fda-approves-first-direct-to-consumer-test-for-breast-cancer-risk","title":"FDA Approves First Direct-to-Consumer Test for Breast Cancer Risk","publishDate":1520362726,"format":"standard","headTitle":"Future of You | KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>Federal regulators approved the first direct-to-consumer test for the BRCA genes, which increase the risk of breast and ovarian cancer, the agency announced on Tuesday.\u003c/p>\n\u003cp>The test for the BRCA1 and BRCA2 genes, from \u003ca href=\"https://www.statnews.com/2017/04/07/genetic-analysis-need-to-know/\" target=\"_blank\" rel=\"noopener\">23andMe\u003c/a>, uses a saliva sample. But it assesses only three of the more than 1,000 known BRCA1/2 mutations, raising concerns that women who are told they do not have any of those variants will be lulled into believing that, as a result, they do not have an elevated risk for breast and ovarian cancer.\u003c/p>\n\u003cp>The three specific BRCA1/BRCA2 breast cancer \u003ca href=\"https://www.kqed.org/futureofyou/439059/why-even-siblings-can-get-different-ancestry-results-from-dna-tests\" target=\"_blank\" rel=\"noopener\">gene mutations \u003c/a>are most common in people with Ashkenazi (Eastern European) Jewish ancestry, accounting for more than 90 percent of their risk of heritable breast and ovarian cancer. But even in this population only 2 percent of women carry any of these three so-called “founder” mutations, the FDA said. Women with one of the mutations have a 45 percent to 85 percent chance of developing breast cancer by age 70, 23andMe said.\u003c/p>\n\u003cp>[contextly_sidebar id=\"n8fyxUwdBRcgBMG96UbMv2Lu8p4ZNItq\"]But these three variants are not the most common BRCA1/BRCA2 mutations in the general population: No more than 0.1 percent of women with non-Ashkenazi ancestry carry the mutations. “A negative result does not rule out the possibility that an individual carries other BRCA mutations that increase cancer risk,” the FDA warned.\u003c/p>\n\u003cp>\u003cstrong>Test Limitations\u003c/strong>\u003cbr>\nThe 23andMe test “is a step forward in the availability of DTC genetic tests,” Donald St. Pierre, acting director of the FDA’s Office of In Vitro Diagnostics and Radiological Health, said in a statement. “But it has a lot of caveats.”\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The agency therefore warned that individuals and their physicians should not use the test results to make decisions about treatments, including prophylactic removal of the breasts or ovaries. That should be based on more extensive testing. Myriad Genetics, which developed the first BRCA1/2 tests, assesses DNA for thousands of variants; it has long \u003ca href=\"http://investor.myriad.com/releasedetail.cfm?releaseid=1021443\" target=\"_blank\" rel=\"noopener\">warned\u003c/a> that other tests, which came on the market after the Supreme Court threw out Myriad’s key BRCA patents, could mislead women.\u003c/p>\n\u003cp>In addition, most cases of breast cancer are not hereditary, from BRCA or other mutations, but “sporadic,” meaning they arise at random or from smoking, obesity, exposure to toxic chemicals, hormone use, and other environmental factors.[contextly_sidebar id=\"ixqQWxrYKmKKTNT32BcHv1EguBJm96pF\"]\u003c/p>\n\u003cp>“At a minimum, 23andMe should be clear with people about what their test is and isn’t and present the information in a fair and balanced way that the average person can understand,” said Myriad spokesman Ron Rogers, who added that some customers might be uncomfortable about 23andMe’s \u003ca href=\"https://gizmodo.com/what-dna-testing-companies-terrifying-privacy-policies-1819158337\" target=\"_blank\" rel=\"noopener\">selling\u003c/a> of genetic information to third parties.\u003c/p>\n\u003cp>For women with Ashkenazi ancestry, the test “is not too bad as a screen,” said Robert Cook-Deegan of Arizona State University, a longtime scholar in the field of genomics ethics and law. “But for other groups with different founder mutations, and there are many, it won’t help much. There’s a big need for users to understand that nuance, which is not widely understood.”\u003c/p>\n\u003cp>\u003cstrong>Direct-to-Consumer Tests\u003c/strong>\u003cbr>\nThe FDA’s decision was based on data from 23andMe showing that its test can accurately identify the three genetic variants in saliva samples. The privately held company also submitted studies showing that consumers understood the report it will send to customers on what the results might mean, how to interpret them, and where to find additional information.\u003c/p>\n\u003cp>“Being the first and only direct-to-consumer genetics company to receive FDA authorization to test for cancer risk without a prescription is a major milestone for 23andMe and for the consumer,” Anne Wojcicki, 23andMe CEO and co-founder, said in a statement. “We believe it’s important for consumers to have direct and affordable access to this potentially life-saving information. … This authorization is incredibly valuable for those who might not be aware of their Ashkenazi Jewish descent.”\u003c/p>\n\u003cp>She, too, emphasized that “our test does not account for all genetic variants that can cause a higher risk of cancer, and people should continue with their recommended cancer screenings.” Myriad, for instance, has identified some 20,000 BRCA1/2 variants.\u003c/p>\n\u003cp>The decision follows one last year in which the FDA gave 23andMe the go-ahead to sell DNA tests assessing customers’ risk of 10 diseases, including Parkinson’s and late-onset Alzheimer’s. Those were the first FDA-approved direct-to-consumer tests for genetic risk of any disease or condition, which the agency said could help people make lifestyle decisions. At the time, the FDA also warned that genetic risk for complex diseases is not a sure thing: People whose 23andMe test does not find genetic variants that increase the risk of a disease can still develop it, and people whose DNA test shows no disease-causing variants might not.\u003c/p>\n\u003cp>The BRCA test will be part of 23andme’s $199 Health + Ancestry test. Existing customers can opt to receive BRCA information for no additional cost, and as with the other disease-risk tests they as well as new customers must specifically choose to receive the information.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“My libertarian streak says this, properly understood, is a good thing that increases access,” said Cook-Deegan, “although I do worry about proliferation of commercial purveyors as the sources of information and keeping the data.”\u003c/p>\n\n","blocks":[],"excerpt":"The test is a step forward in the availability of DTC genetic tests but it comes with caveats.","status":"publish","parent":0,"modified":1520993549,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":17,"wordCount":926},"headData":{"title":"FDA Approves First Direct-to-Consumer Test for Breast Cancer Risk | KQED","description":"The test is a step forward in the availability of DTC genetic tests but it comes with caveats.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"FDA Approves First Direct-to-Consumer Test for Breast Cancer Risk","datePublished":"2018-03-06T18:58:46.000Z","dateModified":"2018-03-14T02:12:29.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"440020 https://ww2.kqed.org/futureofyou/?p=440020","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/03/06/fda-approves-first-direct-to-consumer-test-for-breast-cancer-risk/","disqusTitle":"FDA Approves First Direct-to-Consumer Test for Breast Cancer Risk","source":"DIY Health","nprByline":"Sharon Begley\u003cbr />STAT","path":"/futureofyou/440020/fda-approves-first-direct-to-consumer-test-for-breast-cancer-risk","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Federal regulators approved the first direct-to-consumer test for the BRCA genes, which increase the risk of breast and ovarian cancer, the agency announced on Tuesday.\u003c/p>\n\u003cp>The test for the BRCA1 and BRCA2 genes, from \u003ca href=\"https://www.statnews.com/2017/04/07/genetic-analysis-need-to-know/\" target=\"_blank\" rel=\"noopener\">23andMe\u003c/a>, uses a saliva sample. But it assesses only three of the more than 1,000 known BRCA1/2 mutations, raising concerns that women who are told they do not have any of those variants will be lulled into believing that, as a result, they do not have an elevated risk for breast and ovarian cancer.\u003c/p>\n\u003cp>The three specific BRCA1/BRCA2 breast cancer \u003ca href=\"https://www.kqed.org/futureofyou/439059/why-even-siblings-can-get-different-ancestry-results-from-dna-tests\" target=\"_blank\" rel=\"noopener\">gene mutations \u003c/a>are most common in people with Ashkenazi (Eastern European) Jewish ancestry, accounting for more than 90 percent of their risk of heritable breast and ovarian cancer. But even in this population only 2 percent of women carry any of these three so-called “founder” mutations, the FDA said. Women with one of the mutations have a 45 percent to 85 percent chance of developing breast cancer by age 70, 23andMe said.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>But these three variants are not the most common BRCA1/BRCA2 mutations in the general population: No more than 0.1 percent of women with non-Ashkenazi ancestry carry the mutations. “A negative result does not rule out the possibility that an individual carries other BRCA mutations that increase cancer risk,” the FDA warned.\u003c/p>\n\u003cp>\u003cstrong>Test Limitations\u003c/strong>\u003cbr>\nThe 23andMe test “is a step forward in the availability of DTC genetic tests,” Donald St. Pierre, acting director of the FDA’s Office of In Vitro Diagnostics and Radiological Health, said in a statement. “But it has a lot of caveats.”\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 agency therefore warned that individuals and their physicians should not use the test results to make decisions about treatments, including prophylactic removal of the breasts or ovaries. That should be based on more extensive testing. Myriad Genetics, which developed the first BRCA1/2 tests, assesses DNA for thousands of variants; it has long \u003ca href=\"http://investor.myriad.com/releasedetail.cfm?releaseid=1021443\" target=\"_blank\" rel=\"noopener\">warned\u003c/a> that other tests, which came on the market after the Supreme Court threw out Myriad’s key BRCA patents, could mislead women.\u003c/p>\n\u003cp>In addition, most cases of breast cancer are not hereditary, from BRCA or other mutations, but “sporadic,” meaning they arise at random or from smoking, obesity, exposure to toxic chemicals, hormone use, and other environmental factors.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>“At a minimum, 23andMe should be clear with people about what their test is and isn’t and present the information in a fair and balanced way that the average person can understand,” said Myriad spokesman Ron Rogers, who added that some customers might be uncomfortable about 23andMe’s \u003ca href=\"https://gizmodo.com/what-dna-testing-companies-terrifying-privacy-policies-1819158337\" target=\"_blank\" rel=\"noopener\">selling\u003c/a> of genetic information to third parties.\u003c/p>\n\u003cp>For women with Ashkenazi ancestry, the test “is not too bad as a screen,” said Robert Cook-Deegan of Arizona State University, a longtime scholar in the field of genomics ethics and law. “But for other groups with different founder mutations, and there are many, it won’t help much. There’s a big need for users to understand that nuance, which is not widely understood.”\u003c/p>\n\u003cp>\u003cstrong>Direct-to-Consumer Tests\u003c/strong>\u003cbr>\nThe FDA’s decision was based on data from 23andMe showing that its test can accurately identify the three genetic variants in saliva samples. The privately held company also submitted studies showing that consumers understood the report it will send to customers on what the results might mean, how to interpret them, and where to find additional information.\u003c/p>\n\u003cp>“Being the first and only direct-to-consumer genetics company to receive FDA authorization to test for cancer risk without a prescription is a major milestone for 23andMe and for the consumer,” Anne Wojcicki, 23andMe CEO and co-founder, said in a statement. “We believe it’s important for consumers to have direct and affordable access to this potentially life-saving information. … This authorization is incredibly valuable for those who might not be aware of their Ashkenazi Jewish descent.”\u003c/p>\n\u003cp>She, too, emphasized that “our test does not account for all genetic variants that can cause a higher risk of cancer, and people should continue with their recommended cancer screenings.” Myriad, for instance, has identified some 20,000 BRCA1/2 variants.\u003c/p>\n\u003cp>The decision follows one last year in which the FDA gave 23andMe the go-ahead to sell DNA tests assessing customers’ risk of 10 diseases, including Parkinson’s and late-onset Alzheimer’s. Those were the first FDA-approved direct-to-consumer tests for genetic risk of any disease or condition, which the agency said could help people make lifestyle decisions. At the time, the FDA also warned that genetic risk for complex diseases is not a sure thing: People whose 23andMe test does not find genetic variants that increase the risk of a disease can still develop it, and people whose DNA test shows no disease-causing variants might not.\u003c/p>\n\u003cp>The BRCA test will be part of 23andme’s $199 Health + Ancestry test. Existing customers can opt to receive BRCA information for no additional cost, and as with the other disease-risk tests they as well as new customers must specifically choose to receive the information.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“My libertarian streak says this, properly understood, is a good thing that increases access,” said Cook-Deegan, “although I do worry about proliferation of commercial purveyors as the sources of information and keeping the data.”\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/440020/fda-approves-first-direct-to-consumer-test-for-breast-cancer-risk","authors":["byline_futureofyou_440020"],"programs":["futureofyou_54"],"categories":["futureofyou_1060","futureofyou_1","futureofyou_73"],"tags":["futureofyou_15","futureofyou_264","futureofyou_38","futureofyou_1275","futureofyou_266","futureofyou_61"],"collections":["futureofyou_1093"],"featImg":"futureofyou_440021","label":"source_futureofyou_440020"},"futureofyou_439059":{"type":"posts","id":"futureofyou_439059","meta":{"index":"posts_1591205157","site":"futureofyou","id":"439059","score":null,"sort":[1517508872000]},"guestAuthors":[],"slug":"why-even-siblings-can-get-different-ancestry-results-from-dna-tests","title":"Why Family Members Can Get Different Ancestry Results From DNA Tests","publishDate":1517508872,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>Maybe you got one of those find-your-ancestry kits over the holidays. You've sent off your awkwardly-collected saliva sample, and you're awaiting your results. If your experience is anything like that of me and my mom, you may find surprises — not the dramatic \"switched at birth\" kind, but results that are really different from what you expected.\u003c/p>\n\u003caside class=\"pullquote alignright\">While we get half our genes from each parent, a process called recombination means that each egg and each sperm carries a different mix of the genes from each.\u003c/aside>\n\u003cp>My mom, Carmen Grayson, taught history for 45 years, high school and college, retiring from Hampton University in the late 1990s. But retired history professors never really retire, so she has been researching her family's migrations, through both paper records and now a DNA test. Her father was French Canadian, and her mother (my namesake, Gisella D'Appollonia) was born of Italian parents. They moved to Canada about a decade before my grandmother was born in 1909.\u003c/p>\n\u003cp>Last fall, we sent away to get our DNA tested by \u003ca href=\"https://www.helix.com/\">Helix\u003c/a>, the company that works with National Geographic. Mom's results: 31 percent from Italy and Southern Europe. That made sense because of her Italian mother. But \u003cem>my\u003c/em> Helix results didn't even have an \"Italy and Southern European\" category. How could I have 50 percent of Mom's DNA and not have any Italian? We do look alike, and she says there is little chance we were switched at birth.\u003c/p>\n\u003cp>[contextly_sidebar id=\"BCKB7ylkmMa5eccVlIQnzjjA2KxxcRsY\"]We decided to get a second opinion and sent away to another company, \u003ca href=\"https://www.23andme.com/\">23andMe.\u003c/a> We opened our results together and were just as surprised. This time, I at least had a category for southern Europe. But Mom came back as 25 percent southern European, me only 6 percent. And the Italian? Mom had 11.3 percent to my 1.6. So maybe the first test wasn't wrong. But how could I have an Italian grandmother and almost no Italian genes?\u003c/p>\n\u003cp>To answer this question, Mom and I drove up to Baltimore to visit \u003ca href=\"https://www.hopkinsmedicine.org/profiles/results/directory/profile/3205347/aravinda-chakravarti\">Dr. Aravinda Chakravarti\u003c/a> of the Johns Hopkins University School of Medicine and the Bloomberg School of Public Health, who has spent his career studying genetics and human health.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"That's surprising,\" he told us when we showed him the results. \"But it may still be in the limits of error that these methods have.\"\u003c/p>\n\u003cp>The science for analyzing one's genome is good, Chakravarti says. But the ways the companies analyze the genes leave lots of room for interpretation. So, he says, these tests \"would be most accurate at the level of continental origins, and as you go to higher and higher resolution, they would become less and less accurate.\"\u003c/p>\n\u003cp>As in my case — the results got me to Europe, just not Italy.\u003c/p>\n\u003cp>My 23andMe test also showed less than 1 percent of South Asian, Sub-Saharan African, and East Asian & Native American. This, Chakravarti says, is likely true because the genetics of people on a continental level are so different, and it's not likely South Asian is going to look like European. \"Resolving a difference between, say, an African genome and an East Asian genome would be easy,\" he says. \"But resolving that same difference between one part of East Asia and another part of East Asia is much more difficult.\"\u003c/p>\n\u003cp>I also learned that even though I got half my genes from Mom, they may not mirror hers.\u003c/p>\n\u003cp>We do have the genes we inherit — 50 percent from each parent. But \u003ca href=\"https://www.helix.com/blog/author/elissa-levin/\">Elissa Levin\u003c/a>, a genetic counselor and the director of policy and clinical affairs of Helix, says a process called recombination means that each egg and each sperm carries a different mix of a parent's genes.\u003c/p>\n\u003cp>\"When we talk about the 50 percent that gets inherited from Mom, there's a chance that you have a recombination that just gave you more of the northwest European part than the Italian part of your Mom's ancestry DNA,\" she says. That is also why siblings can have different ancestry results.\u003c/p>\n\u003cp>The companies compare customers' DNA samples to samples they have from people around the world who have lived in a certain area for generations. The samples come from some databases to which all scientists have access, and the companies may also collect their own.\u003c/p>\n\u003cp>\"We're able to look at, what are the specific markers, what are the specific segments of DNA that we're looking at that help us to identify, 'Those people are from this part of northern Europe or southern Europe or Southeast Asia,' \" Levin says.\u003c/p>\n\u003cp>As the companies collect more samples, their understanding of markers of people of a particular heritage should become more precise. But for now, the smaller the percentage of a population within a continent that is in the database, the less certain they are. Levin says Helix chooses to not report some of those smaller percentages.\u003c/p>\n\u003cp>The 23andMe reports results with a 50 percent confidence interval — they're 50 percent sure their geographic placement is correct. Move the setting up to 90 percent confidence, meaning your placement in a region is 90 percent certain, and that small 1.6 percent of my ancestry that is Italian disappears.\u003c/p>\n\u003cp>The ancestry tests also have to take into account the fact that humans have been migrating for millennia, mixing DNA along the way. To contend with that, the companies' analyses involve some \"random chance,\" as Levin puts it. A computer has to make a decision.\u003c/p>\n\u003cp>And the ancestry companies have to make judgment calls. \u003ca href=\"https://blog.23andme.com/health-traits/a-conversation-health-content-scientist-robin-smith/\">Robin Smith\u003c/a>, a senior product manager with 23andMe, says their computers compare the DNA with 31 groups. \"Let's say a piece of your DNA looks most like British and Irish but it also looks a little bit like French-German,\" he says. \"Based on some statistical measures, we'd decide whether to call that as British-Irish or French-German, or maybe we go up one level and call it northwestern European.\"\u003c/p>\n\u003cp>What does he think explains my case?\u003c/p>\n\u003cp>\"It was a bit surprising,\" he says. \"But in looking at the fact that you have some southern European and some French-German, the picture became a little clearer to me.\"\u003c/p>\n\u003cp>So, for now, my Italian grandmother doesn't show up in these tests. No matter — Chakravarti, Levin and Smith all say let the results \u003cem>add\u003c/em> to your life story. The DNA is just a piece of what makes you you.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Gisele Grayson is a senior producer on NPR's Science Desk who runs the health reporting collaboration with member stations and \u003ca href=\"http://www.kaiserhealthnews.org\">Kaiser Health News\u003c/a>. \u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=My+Grandmother+Was+Italian.+Why+Aren%27t+My+Genes+Italian%3F&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n","blocks":[],"excerpt":"Popular DNA ancestry tests don't always find what people expect. That is because of how DNA rearranges itself when egg meets sperm — and the quirks of genetic databases.","status":"publish","parent":0,"modified":1517516157,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":24,"wordCount":1125},"headData":{"title":"Why Family Members Can Get Different Ancestry Results From DNA Tests | KQED","description":"Popular DNA ancestry tests don't always find what people expect. That is because of how DNA rearranges itself when egg meets sperm — and the quirks of genetic databases.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Why Family Members Can Get Different Ancestry Results From DNA Tests","datePublished":"2018-02-01T18:14:32.000Z","dateModified":"2018-02-01T20:15:57.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"439059 https://ww2.kqed.org/futureofyou/?p=439059","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/02/01/why-even-siblings-can-get-different-ancestry-results-from-dna-tests/","disqusTitle":"Why Family Members Can Get Different Ancestry Results From DNA Tests","nprByline":"Gisele Grayson\u003cbr />NPR Shots","nprImageAgency":"Meredith Rizzo/NPR","nprStoryId":"578293890","nprApiLink":"http://api.npr.org/query?id=578293890&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"https://www.npr.org/sections/health-shots/2018/01/22/578293890/my-grandmother-was-italian-why-arent-my-genes-italian?ft=nprml&f=578293890","nprRetrievedStory":"1","nprPubDate":"Fri, 26 Jan 2018 13:02:00 -0500","nprStoryDate":"Mon, 22 Jan 2018 05:02:00 -0500","nprLastModifiedDate":"Fri, 26 Jan 2018 13:02:36 -0500","nprAudio":"https://ondemand.npr.org/anon.npr-mp3/npr/me/2018/01/20180122_me_my_grandmother_was_italian_why_arent_my_genes_italian.mp3?orgId=1&topicId=1128&d=229&p=3&story=578293890&ft=nprml&f=578293890","nprAudioM3u":"http://api.npr.org/m3u/1579629388-6f741a.m3u?orgId=1&topicId=1128&d=229&p=3&story=578293890&ft=nprml&f=578293890","path":"/futureofyou/439059/why-even-siblings-can-get-different-ancestry-results-from-dna-tests","audioUrl":"https://ondemand.npr.org/anon.npr-mp3/npr/me/2018/01/20180122_me_my_grandmother_was_italian_why_arent_my_genes_italian.mp3?orgId=1&topicId=1128&d=229&p=3&story=578293890&ft=nprml&f=578293890","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Maybe you got one of those find-your-ancestry kits over the holidays. You've sent off your awkwardly-collected saliva sample, and you're awaiting your results. If your experience is anything like that of me and my mom, you may find surprises — not the dramatic \"switched at birth\" kind, but results that are really different from what you expected.\u003c/p>\n\u003caside class=\"pullquote alignright\">While we get half our genes from each parent, a process called recombination means that each egg and each sperm carries a different mix of the genes from each.\u003c/aside>\n\u003cp>My mom, Carmen Grayson, taught history for 45 years, high school and college, retiring from Hampton University in the late 1990s. But retired history professors never really retire, so she has been researching her family's migrations, through both paper records and now a DNA test. Her father was French Canadian, and her mother (my namesake, Gisella D'Appollonia) was born of Italian parents. They moved to Canada about a decade before my grandmother was born in 1909.\u003c/p>\n\u003cp>Last fall, we sent away to get our DNA tested by \u003ca href=\"https://www.helix.com/\">Helix\u003c/a>, the company that works with National Geographic. Mom's results: 31 percent from Italy and Southern Europe. That made sense because of her Italian mother. But \u003cem>my\u003c/em> Helix results didn't even have an \"Italy and Southern European\" category. How could I have 50 percent of Mom's DNA and not have any Italian? We do look alike, and she says there is little chance we were switched at birth.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>We decided to get a second opinion and sent away to another company, \u003ca href=\"https://www.23andme.com/\">23andMe.\u003c/a> We opened our results together and were just as surprised. This time, I at least had a category for southern Europe. But Mom came back as 25 percent southern European, me only 6 percent. And the Italian? Mom had 11.3 percent to my 1.6. So maybe the first test wasn't wrong. But how could I have an Italian grandmother and almost no Italian genes?\u003c/p>\n\u003cp>To answer this question, Mom and I drove up to Baltimore to visit \u003ca href=\"https://www.hopkinsmedicine.org/profiles/results/directory/profile/3205347/aravinda-chakravarti\">Dr. Aravinda Chakravarti\u003c/a> of the Johns Hopkins University School of Medicine and the Bloomberg School of Public Health, who has spent his career studying genetics and human health.\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>\"That's surprising,\" he told us when we showed him the results. \"But it may still be in the limits of error that these methods have.\"\u003c/p>\n\u003cp>The science for analyzing one's genome is good, Chakravarti says. But the ways the companies analyze the genes leave lots of room for interpretation. So, he says, these tests \"would be most accurate at the level of continental origins, and as you go to higher and higher resolution, they would become less and less accurate.\"\u003c/p>\n\u003cp>As in my case — the results got me to Europe, just not Italy.\u003c/p>\n\u003cp>My 23andMe test also showed less than 1 percent of South Asian, Sub-Saharan African, and East Asian & Native American. This, Chakravarti says, is likely true because the genetics of people on a continental level are so different, and it's not likely South Asian is going to look like European. \"Resolving a difference between, say, an African genome and an East Asian genome would be easy,\" he says. \"But resolving that same difference between one part of East Asia and another part of East Asia is much more difficult.\"\u003c/p>\n\u003cp>I also learned that even though I got half my genes from Mom, they may not mirror hers.\u003c/p>\n\u003cp>We do have the genes we inherit — 50 percent from each parent. But \u003ca href=\"https://www.helix.com/blog/author/elissa-levin/\">Elissa Levin\u003c/a>, a genetic counselor and the director of policy and clinical affairs of Helix, says a process called recombination means that each egg and each sperm carries a different mix of a parent's genes.\u003c/p>\n\u003cp>\"When we talk about the 50 percent that gets inherited from Mom, there's a chance that you have a recombination that just gave you more of the northwest European part than the Italian part of your Mom's ancestry DNA,\" she says. That is also why siblings can have different ancestry results.\u003c/p>\n\u003cp>The companies compare customers' DNA samples to samples they have from people around the world who have lived in a certain area for generations. The samples come from some databases to which all scientists have access, and the companies may also collect their own.\u003c/p>\n\u003cp>\"We're able to look at, what are the specific markers, what are the specific segments of DNA that we're looking at that help us to identify, 'Those people are from this part of northern Europe or southern Europe or Southeast Asia,' \" Levin says.\u003c/p>\n\u003cp>As the companies collect more samples, their understanding of markers of people of a particular heritage should become more precise. But for now, the smaller the percentage of a population within a continent that is in the database, the less certain they are. Levin says Helix chooses to not report some of those smaller percentages.\u003c/p>\n\u003cp>The 23andMe reports results with a 50 percent confidence interval — they're 50 percent sure their geographic placement is correct. Move the setting up to 90 percent confidence, meaning your placement in a region is 90 percent certain, and that small 1.6 percent of my ancestry that is Italian disappears.\u003c/p>\n\u003cp>The ancestry tests also have to take into account the fact that humans have been migrating for millennia, mixing DNA along the way. To contend with that, the companies' analyses involve some \"random chance,\" as Levin puts it. A computer has to make a decision.\u003c/p>\n\u003cp>And the ancestry companies have to make judgment calls. \u003ca href=\"https://blog.23andme.com/health-traits/a-conversation-health-content-scientist-robin-smith/\">Robin Smith\u003c/a>, a senior product manager with 23andMe, says their computers compare the DNA with 31 groups. \"Let's say a piece of your DNA looks most like British and Irish but it also looks a little bit like French-German,\" he says. \"Based on some statistical measures, we'd decide whether to call that as British-Irish or French-German, or maybe we go up one level and call it northwestern European.\"\u003c/p>\n\u003cp>What does he think explains my case?\u003c/p>\n\u003cp>\"It was a bit surprising,\" he says. \"But in looking at the fact that you have some southern European and some French-German, the picture became a little clearer to me.\"\u003c/p>\n\u003cp>So, for now, my Italian grandmother doesn't show up in these tests. No matter — Chakravarti, Levin and Smith all say let the results \u003cem>add\u003c/em> to your life story. The DNA is just a piece of what makes you you.\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>\u003cem>Gisele Grayson is a senior producer on NPR's Science Desk who runs the health reporting collaboration with member stations and \u003ca href=\"http://www.kaiserhealthnews.org\">Kaiser Health News\u003c/a>. \u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=My+Grandmother+Was+Italian.+Why+Aren%27t+My+Genes+Italian%3F&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/439059/why-even-siblings-can-get-different-ancestry-results-from-dna-tests","authors":["byline_futureofyou_439059"],"categories":["futureofyou_1","futureofyou_1064"],"tags":["futureofyou_15","futureofyou_464","futureofyou_120","futureofyou_641"],"featImg":"futureofyou_439061","label":"futureofyou"},"futureofyou_436928":{"type":"posts","id":"futureofyou_436928","meta":{"index":"posts_1591205157","site":"futureofyou","id":"436928","score":null,"sort":[1510252699000]},"guestAuthors":[],"slug":"free-dna-kits-at-s-f-49ers-games-attract-skeptics-and-regulators","title":"Free DNA Kits at S.F. 49ers Games Attract Skeptics -- and Regulators","publishDate":1510252699,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>Depending on whom you ask, finding out whether your genes make you a better athlete or give you healthier skin may be as easy as swabbing your cheeks for a DNA test on your way into a football game. But others say these \"wellness\" tests marketed directly to consumers are modern snake oil — worthless, or even misleading.\u003c/p>\n\u003cp>On Monday, the Food and Drug Administration gave a boost to direct-to-consumer genetic testing when it announced plans to streamline its approval process.\u003c/p>\n\u003caside class=\"pullquote alignright\">'Giving out DNA kits at a football game screams out for regulation.'\u003ccite>Peter Pitts, Center for Medicine in the Public Interest\u003c/cite>\u003c/aside>\n\u003cp>\"These tests can prompt consumers to be more engaged in pursuing the benefits of healthy lifestyle choices and more aware of their health risks,\" FDA Commissioner Scott Gottlieb said in a \u003ca href=\"https://www.prnewswire.com/news-releases/statement-from-fda-commissioner-scott-gottlieb-md-on-implementation-of-agencys-streamlined-development-and-review-pathway-for-consumer-tests-that-evaluate-genetic-health-risks-300549992.html\" target=\"_blank\" rel=\"noopener\">statement\u003c/a>. However, he continued, \"They're not without their own risks — especially if they provide consumers with incorrect or misleading information that may be used to make health choices without considering the advice of a medical professional.\"\u003c/p>\n\u003cp>The FDA intends to let sellers of direct-to-consumer DNA test kits seek a one-time FDA review, which would allow subsequent tests to be sold without going first to the FDA for approval. Under present rules, each new health test must be submitted and reviewed. The FDA's jurisdiction applies to tests used to assess or diagnose health.\u003c/p>\n\u003cp>But a company in Boston is finding out that mass marketing of DNA tests attracts not just customers and fans, but skeptics and regulators. \u003ca href=\"http://orig3n.com/\" target=\"_blank\" rel=\"noopener\">Orig3n\u003c/a>, which sells genetic test kits with catchy names like \"Fitcode,\" \"Fuel\" and \"Bliss\" at festivals and sporting events, now finds itself under scrutiny by state and federal officials.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"The California Department of Public Health is investigating the nature and distribution of these test kits by Orig3n at Levi's Stadium in Santa Clara,\" a department representative said in an email.\u003c/p>\n\u003cp>At every 49ers home game during the current season, the company has a booth where it offers free introductory DNA test kits to the 68,000 fans entering the stadium. Fans can also purchase other tests at prices ranging from $29 to $149 each. It has a similar relationship with the Baltimore Ravens, but a plan to give test kits to every fan entering a September game was called off after Maryland regulators had some questions.\u003c/p>\n\u003cp>\"I want people to learn more about themselves, and what they choose to do with that information is really up to them,\" says Orig3n co-founder and chief operating officer Kate Blanchard. \"But some of the information can really impact the way they live their life.\"\u003c/p>\n\u003cp>That is precisely the problem, and it's why state and federal regulators have said that \"information\" tests like Orig3n's should be regulated as medical tests, because they're assessing a person's health. It's a complex question, as the FDA's Gottlieb notes. \"Consider the consequences of a person who is told they're not at risk for coronary heart disease and incorrectly opts to forgo dietary changes or drugs that reduce their risk of heart attack and death,\" he says.\u003c/p>\n\u003cp>As much as genetic science has advanced, scientists do not fully understand how the more than 50 million known genetic variations interact with each other or with lifestyle and other factors to affect someone's health, wellness or behavior. Very few genes are as closely associated with a specific outcome as the breast cancer genes BRCA1 and BRCA2, and even a positive test for these cancer-associated genes is insufficient for doctors to advise patients to have surgery or other major treatments.\u003c/p>\n\u003cp>In other words, you can get a test that tells you what variations you have, but that test alone cannot predict your future or dictate specific health or lifestyle decisions. Skeptics worry that people will read too much into genetic test results, especially if they are done without the help of a medical professional.\u003c/p>\n\u003cp>Blanchard says she stepped up her personal training regimen after her DNA test indicated that she might perform well in endurance sports. She says it was a change she might not have made without this information.\u003c/p>\n\u003cp>Distributing DNA tests to tens of thousands of people at NFL football games \"is not good clinical practice,\" says Peter Pitts, president of the advocacy group \u003ca href=\"http://cmpi.org/\">Center for Medicine in the Public Interest\u003c/a>. Unlike tests done in clinical laboratories, like tests for diabetes or cholesterol, there is less control over the quality of the test process, so the resulting data may be \"highly questionable,\" says Pitts, who is a former associate commissioner of the Food and Drug Administration.\u003c/p>\n\u003cp>Now you can get a nutrition plan and ready-to-eat meals based on \"your body's unique make-up\" from Campbell's Soup-funded \u003ca href=\"http://habit.com/\">Habit\u003c/a>. \u003ca href=\"http://ancestry.com/\">Ancestry\u003c/a> sells a test that \"tells a more complete story of you,\" and \u003ca href=\"https://www.helix.com/shop/\">Helix\u003c/a> promotes more than a dozen of its partners who sell genetic tests ranging from National Geographic (your ancestor's migration paths) to companies that offer targeted fitness routines based on the DNA results, and several health companies. There is even a \u003ca href=\"https://www.helix.com/shop/vinome-wine-explorer/\">wine club\u003c/a> with wines \"scientifically selected based on your DNA.\"\u003c/p>\n\u003cp>\"We don't begrudge the excitement and the desire to help people based on genetics,\" says Shirley Wu, director of product science for 23andMe, a direct-to-consumer genetic testing company that started in 2006. However, she questions companies that may be overpromising on what the tests can tell you. The science behind some consumer-oriented tests is lacking, says Wu. \"We are still at the beginning of our understanding.\"\u003c/p>\n\u003cp>The FDA \u003ca href=\"https://www.npr.org/sections/health-shots/2013/12/06/249231236/23andme-bows-to-fdas-demands-drops-health-claims\">halted 23andMe's sales\u003c/a> of medical-risk tests in 2013, saying that it couldn't prove those tests were accurate. In April, 23andMe obtained federal \u003ca href=\"https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm551185.htm\">clearance\u003c/a> to resume selling direct-to-consumer DNA tests for certain health risks. Now, consumers can get reports on their ancestry as well as genes associated with sleep quality, lactose sensitivity, weight and other wellness factors and risks for several dozen inherited conditions for about $200.\u003c/p>\n\u003cp>And companies can offer very different information on the same finding. That's evident in two reports on the CC variant of the ACTN3 gene:\u003c/p>\n\u003cul>\n\u003cli>23andMe tells you that you have a trait \"common among elite power athletes ... but its role for non-elite athletes isn't completely understood.\" The report also says that lifestyle and training are the driver of athletic performance for most people.\u003c/li>\n\u003cli>Orig3n also tells you that this trait is common in elite athletes and \"is found in 45 percent of the general population.\" And it \"contributes to your ability to perform better in sports requiring power such as sprinting.\" The Orig3n report recommends the types of sports that someone with this biomarker might want to pursue.\u003c/li>\n\u003c/ul>\n\u003cp>A \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4278350/\">2015 review\u003c/a> of genetic testing for sports concluded that there is little value to knowing the ACTN3 or other variants in recreational athletes. However, genetic testing of professional athletes may be useful for training and injury prevention, the review authors concluded.\u003c/p>\n\u003cp>\"For the most part, data on personal genomic testing have revealed little or no harms but also little or no health benefits,\" writes Dr. Muin Khoury, director of the Office of Public Health Genomics at the Centers for Disease Control and Prevention in a \u003ca href=\"https://blogs.cdc.gov/genomics/2017/04/18/direct-to-consumer-2/\">recent article\u003c/a>. \"Also, evidence on the ability of genetic information to change health behavior has been lacking.\"\u003c/p>\n\u003cp>Blanchard says that Orig3n got the idea for its fitness DNA test after it solicited blood samples for research at marathons and other sporting events. \"People started asking, 'What can you tell me about me?' \" she says.\u003c/p>\n\u003cp>The business model for 23andMe, Helix and some of the other direct-to-consumer DNA testing companies doesn't rely solely on sales of test kits. They want to aggregate massive amounts of human genetic data that can be mined for research and commercial uses. Consumers are asked to \"opt-in\" to this when getting tested — and most do, according to 23andMe.\u003c/p>\n\u003cp>Orig3n is an exception: It says it would contact people separately if it ever wanted to use the DNA for anything other than the person's own tests. But those test kits create a pool of people who would be more likely to give blood samples for Orig3n's stem cell research. Its business banks on amassing tens of thousands of human blood samples so that it can create many stem cell lines.\u003c/p>\n\u003cp>Orig3n has sponsorship arrangements with the Baltimore Ravens and the San Francisco 49ers football teams. Fans at home games can get a free test that reports on three genes — ACTN3 for muscle force, FOXP2 for language-learning ability and AGER for skin aging. For $149, Orig3n reports back on 27 genes related to strength, metabolism, endurance and power. The company's other tests are to provide information about genes associated with skin, child development, and how you think, feel and react.\u003c/p>\n\u003cp>Orig3n says its tests are \"not diagnostic\" and \"for informational purposes only.\" The federal agency that oversees medical labs disagrees. That distinction is critical because it is the boundary between regulated medical services and ones that avoid that level of scrutiny.\u003c/p>\n\u003cp>After reviewing Orig3n's materials, the Centers for Medicare and Medicaid Services told the company on Oct. 30 that it must follow the rules for medical laboratories because its services include \"genetic testing for the assessment of health.\"\u003c/p>\n\u003cp>The decision was based on 18 of the 140 genes included in Orig3n's tests, according to a \u003ca href=\"https://www.documentcloud.org/documents/4176983-CMS-Letter.html\">letter\u003c/a> from CMS to Orig3n.\u003c/p>\n\u003cp>Orig3n's Blanchard says the company will continue selling its tests without those 18 genes until Orig3n receives approval from regulators to resume. In addition to CMS, Orig3n must satisfy state regulators in Massachusetts, Maryland and California – or any other states where it operates. \"Going forward, we will continue to work with CMS, California, Massachusetts and the other states to ensure that we are meeting all federal and state regulatory requirements regarding our products,\" Blanchard said in an email.\u003c/p>\n\u003cp>That may not be enough to satisfy all the critics. Says Pitts: \"Giving out DNA kits at a football game screams out for regulation.\"\u003c/p>\n\u003chr>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Doug Levy is a freelance writer based in Sausalito, Calif. \u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=You+Can+Get+Your+DNA+Tested+At+An+NFL+Game.+Should+You%3F+&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n","blocks":[],"excerpt":"Companies distributing genetic tests at pro sports events say they can help people make the most of exercise and nutrition. But regulators say some are medical tests that could land people in trouble.","status":"publish","parent":0,"modified":1510254186,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":31,"wordCount":1718},"headData":{"title":"Free DNA Kits at S.F. 49ers Games Attract Skeptics -- and Regulators | KQED","description":"Companies distributing genetic tests at pro sports events say they can help people make the most of exercise and nutrition. But regulators say some are medical tests that could land people in trouble.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Free DNA Kits at S.F. 49ers Games Attract Skeptics -- and Regulators","datePublished":"2017-11-09T18:38:19.000Z","dateModified":"2017-11-09T19:03:06.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"436928 https://ww2.kqed.org/futureofyou/?p=436928","disqusUrl":"https://ww2.kqed.org/futureofyou/2017/11/09/free-dna-kits-at-s-f-49ers-games-attract-skeptics-and-regulators/","disqusTitle":"Free DNA Kits at S.F. 49ers Games Attract Skeptics -- and Regulators","source":"KQED Future of You","nprByline":"Doug Levy\u003cbr />NPR Shots","nprImageAgency":"Douglas Levy for NPR","nprStoryId":"562564639","nprApiLink":"http://api.npr.org/query?id=562564639&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"https://www.npr.org/sections/health-shots/2017/11/08/562564639/you-can-get-your-dna-tested-at-an-nfl-game-should-you?ft=nprml&f=562564639","nprRetrievedStory":"1","nprPubDate":"Wed, 08 Nov 2017 15:44:00 -0500","nprStoryDate":"Wed, 08 Nov 2017 05:00:00 -0500","nprLastModifiedDate":"Wed, 08 Nov 2017 20:19:10 -0500","path":"/futureofyou/436928/free-dna-kits-at-s-f-49ers-games-attract-skeptics-and-regulators","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Depending on whom you ask, finding out whether your genes make you a better athlete or give you healthier skin may be as easy as swabbing your cheeks for a DNA test on your way into a football game. But others say these \"wellness\" tests marketed directly to consumers are modern snake oil — worthless, or even misleading.\u003c/p>\n\u003cp>On Monday, the Food and Drug Administration gave a boost to direct-to-consumer genetic testing when it announced plans to streamline its approval process.\u003c/p>\n\u003caside class=\"pullquote alignright\">'Giving out DNA kits at a football game screams out for regulation.'\u003ccite>Peter Pitts, Center for Medicine in the Public Interest\u003c/cite>\u003c/aside>\n\u003cp>\"These tests can prompt consumers to be more engaged in pursuing the benefits of healthy lifestyle choices and more aware of their health risks,\" FDA Commissioner Scott Gottlieb said in a \u003ca href=\"https://www.prnewswire.com/news-releases/statement-from-fda-commissioner-scott-gottlieb-md-on-implementation-of-agencys-streamlined-development-and-review-pathway-for-consumer-tests-that-evaluate-genetic-health-risks-300549992.html\" target=\"_blank\" rel=\"noopener\">statement\u003c/a>. However, he continued, \"They're not without their own risks — especially if they provide consumers with incorrect or misleading information that may be used to make health choices without considering the advice of a medical professional.\"\u003c/p>\n\u003cp>The FDA intends to let sellers of direct-to-consumer DNA test kits seek a one-time FDA review, which would allow subsequent tests to be sold without going first to the FDA for approval. Under present rules, each new health test must be submitted and reviewed. The FDA's jurisdiction applies to tests used to assess or diagnose health.\u003c/p>\n\u003cp>But a company in Boston is finding out that mass marketing of DNA tests attracts not just customers and fans, but skeptics and regulators. \u003ca href=\"http://orig3n.com/\" target=\"_blank\" rel=\"noopener\">Orig3n\u003c/a>, which sells genetic test kits with catchy names like \"Fitcode,\" \"Fuel\" and \"Bliss\" at festivals and sporting events, now finds itself under scrutiny by state and federal officials.\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 California Department of Public Health is investigating the nature and distribution of these test kits by Orig3n at Levi's Stadium in Santa Clara,\" a department representative said in an email.\u003c/p>\n\u003cp>At every 49ers home game during the current season, the company has a booth where it offers free introductory DNA test kits to the 68,000 fans entering the stadium. Fans can also purchase other tests at prices ranging from $29 to $149 each. It has a similar relationship with the Baltimore Ravens, but a plan to give test kits to every fan entering a September game was called off after Maryland regulators had some questions.\u003c/p>\n\u003cp>\"I want people to learn more about themselves, and what they choose to do with that information is really up to them,\" says Orig3n co-founder and chief operating officer Kate Blanchard. \"But some of the information can really impact the way they live their life.\"\u003c/p>\n\u003cp>That is precisely the problem, and it's why state and federal regulators have said that \"information\" tests like Orig3n's should be regulated as medical tests, because they're assessing a person's health. It's a complex question, as the FDA's Gottlieb notes. \"Consider the consequences of a person who is told they're not at risk for coronary heart disease and incorrectly opts to forgo dietary changes or drugs that reduce their risk of heart attack and death,\" he says.\u003c/p>\n\u003cp>As much as genetic science has advanced, scientists do not fully understand how the more than 50 million known genetic variations interact with each other or with lifestyle and other factors to affect someone's health, wellness or behavior. Very few genes are as closely associated with a specific outcome as the breast cancer genes BRCA1 and BRCA2, and even a positive test for these cancer-associated genes is insufficient for doctors to advise patients to have surgery or other major treatments.\u003c/p>\n\u003cp>In other words, you can get a test that tells you what variations you have, but that test alone cannot predict your future or dictate specific health or lifestyle decisions. Skeptics worry that people will read too much into genetic test results, especially if they are done without the help of a medical professional.\u003c/p>\n\u003cp>Blanchard says she stepped up her personal training regimen after her DNA test indicated that she might perform well in endurance sports. She says it was a change she might not have made without this information.\u003c/p>\n\u003cp>Distributing DNA tests to tens of thousands of people at NFL football games \"is not good clinical practice,\" says Peter Pitts, president of the advocacy group \u003ca href=\"http://cmpi.org/\">Center for Medicine in the Public Interest\u003c/a>. Unlike tests done in clinical laboratories, like tests for diabetes or cholesterol, there is less control over the quality of the test process, so the resulting data may be \"highly questionable,\" says Pitts, who is a former associate commissioner of the Food and Drug Administration.\u003c/p>\n\u003cp>Now you can get a nutrition plan and ready-to-eat meals based on \"your body's unique make-up\" from Campbell's Soup-funded \u003ca href=\"http://habit.com/\">Habit\u003c/a>. \u003ca href=\"http://ancestry.com/\">Ancestry\u003c/a> sells a test that \"tells a more complete story of you,\" and \u003ca href=\"https://www.helix.com/shop/\">Helix\u003c/a> promotes more than a dozen of its partners who sell genetic tests ranging from National Geographic (your ancestor's migration paths) to companies that offer targeted fitness routines based on the DNA results, and several health companies. There is even a \u003ca href=\"https://www.helix.com/shop/vinome-wine-explorer/\">wine club\u003c/a> with wines \"scientifically selected based on your DNA.\"\u003c/p>\n\u003cp>\"We don't begrudge the excitement and the desire to help people based on genetics,\" says Shirley Wu, director of product science for 23andMe, a direct-to-consumer genetic testing company that started in 2006. However, she questions companies that may be overpromising on what the tests can tell you. The science behind some consumer-oriented tests is lacking, says Wu. \"We are still at the beginning of our understanding.\"\u003c/p>\n\u003cp>The FDA \u003ca href=\"https://www.npr.org/sections/health-shots/2013/12/06/249231236/23andme-bows-to-fdas-demands-drops-health-claims\">halted 23andMe's sales\u003c/a> of medical-risk tests in 2013, saying that it couldn't prove those tests were accurate. In April, 23andMe obtained federal \u003ca href=\"https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm551185.htm\">clearance\u003c/a> to resume selling direct-to-consumer DNA tests for certain health risks. Now, consumers can get reports on their ancestry as well as genes associated with sleep quality, lactose sensitivity, weight and other wellness factors and risks for several dozen inherited conditions for about $200.\u003c/p>\n\u003cp>And companies can offer very different information on the same finding. That's evident in two reports on the CC variant of the ACTN3 gene:\u003c/p>\n\u003cul>\n\u003cli>23andMe tells you that you have a trait \"common among elite power athletes ... but its role for non-elite athletes isn't completely understood.\" The report also says that lifestyle and training are the driver of athletic performance for most people.\u003c/li>\n\u003cli>Orig3n also tells you that this trait is common in elite athletes and \"is found in 45 percent of the general population.\" And it \"contributes to your ability to perform better in sports requiring power such as sprinting.\" The Orig3n report recommends the types of sports that someone with this biomarker might want to pursue.\u003c/li>\n\u003c/ul>\n\u003cp>A \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4278350/\">2015 review\u003c/a> of genetic testing for sports concluded that there is little value to knowing the ACTN3 or other variants in recreational athletes. However, genetic testing of professional athletes may be useful for training and injury prevention, the review authors concluded.\u003c/p>\n\u003cp>\"For the most part, data on personal genomic testing have revealed little or no harms but also little or no health benefits,\" writes Dr. Muin Khoury, director of the Office of Public Health Genomics at the Centers for Disease Control and Prevention in a \u003ca href=\"https://blogs.cdc.gov/genomics/2017/04/18/direct-to-consumer-2/\">recent article\u003c/a>. \"Also, evidence on the ability of genetic information to change health behavior has been lacking.\"\u003c/p>\n\u003cp>Blanchard says that Orig3n got the idea for its fitness DNA test after it solicited blood samples for research at marathons and other sporting events. \"People started asking, 'What can you tell me about me?' \" she says.\u003c/p>\n\u003cp>The business model for 23andMe, Helix and some of the other direct-to-consumer DNA testing companies doesn't rely solely on sales of test kits. They want to aggregate massive amounts of human genetic data that can be mined for research and commercial uses. Consumers are asked to \"opt-in\" to this when getting tested — and most do, according to 23andMe.\u003c/p>\n\u003cp>Orig3n is an exception: It says it would contact people separately if it ever wanted to use the DNA for anything other than the person's own tests. But those test kits create a pool of people who would be more likely to give blood samples for Orig3n's stem cell research. Its business banks on amassing tens of thousands of human blood samples so that it can create many stem cell lines.\u003c/p>\n\u003cp>Orig3n has sponsorship arrangements with the Baltimore Ravens and the San Francisco 49ers football teams. Fans at home games can get a free test that reports on three genes — ACTN3 for muscle force, FOXP2 for language-learning ability and AGER for skin aging. For $149, Orig3n reports back on 27 genes related to strength, metabolism, endurance and power. The company's other tests are to provide information about genes associated with skin, child development, and how you think, feel and react.\u003c/p>\n\u003cp>Orig3n says its tests are \"not diagnostic\" and \"for informational purposes only.\" The federal agency that oversees medical labs disagrees. That distinction is critical because it is the boundary between regulated medical services and ones that avoid that level of scrutiny.\u003c/p>\n\u003cp>After reviewing Orig3n's materials, the Centers for Medicare and Medicaid Services told the company on Oct. 30 that it must follow the rules for medical laboratories because its services include \"genetic testing for the assessment of health.\"\u003c/p>\n\u003cp>The decision was based on 18 of the 140 genes included in Orig3n's tests, according to a \u003ca href=\"https://www.documentcloud.org/documents/4176983-CMS-Letter.html\">letter\u003c/a> from CMS to Orig3n.\u003c/p>\n\u003cp>Orig3n's Blanchard says the company will continue selling its tests without those 18 genes until Orig3n receives approval from regulators to resume. In addition to CMS, Orig3n must satisfy state regulators in Massachusetts, Maryland and California – or any other states where it operates. \"Going forward, we will continue to work with CMS, California, Massachusetts and the other states to ensure that we are meeting all federal and state regulatory requirements regarding our products,\" Blanchard said in an email.\u003c/p>\n\u003cp>That may not be enough to satisfy all the critics. Says Pitts: \"Giving out DNA kits at a football game screams out for regulation.\"\u003c/p>\n\u003chr>\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>\u003cem>Doug Levy is a freelance writer based in Sausalito, Calif. \u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=You+Can+Get+Your+DNA+Tested+At+An+NFL+Game.+Should+You%3F+&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/436928/free-dna-kits-at-s-f-49ers-games-attract-skeptics-and-regulators","authors":["byline_futureofyou_436928"],"categories":["futureofyou_452","futureofyou_1","futureofyou_73","futureofyou_1064"],"tags":["futureofyou_15","futureofyou_1390","futureofyou_1015","futureofyou_1391"],"featImg":"futureofyou_436943","label":"source_futureofyou_436928"},"futureofyou_368185":{"type":"posts","id":"futureofyou_368185","meta":{"index":"posts_1591205157","site":"futureofyou","id":"368185","score":null,"sort":[1491585658000]},"guestAuthors":[],"slug":"what-the-23andme-disease-risk-reports-can-tell-you-and-what-they-cant","title":"What a 23andMe Disease Risk Report Can Tell You and What It Can't","publishDate":1491585658,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp class=\"danger-zone\">The genetic testing company 23andMe received \u003ca href=\"https://www.statnews.com/2017/04/06/genetic-test-alzheimers/\">approval\u003c/a> this week from regulators to sell genetic reports on an individual’s risk for 10 diseases, most prominently Alzheimer’s and Parkinson’s. Before you send in your saliva sample and $199, here’s what you should know:\u003c/p>\n\u003ch2 class=\"danger-zone\">What will a genetic test actually tell me?\u003c/h2>\n\u003cp class=\"danger-zone\">At most, that you carry a DNA variant that, according to research, is associated with a higher risk of a disease. For the rare clotting disorder hereditary thrombophilia, for instance, the report will say that you do or do not carry a variant called Factor V Leiden in the F5 gene and a variant called Prothrombin G20210A in the F2 gene.\u003c/p>\n\u003caside class=\"pullquote alignright\">'It’s important for people to know that even if they have a mutation in the genes [associated with Parkinson’s that 23andMe will test for], by and large they won’t get Parkinson’s disease.'\u003c/aside>\n\u003cp>23and me is still fine-tuning the reports, but its tests will also tell you how the presence (or absence) of variants affects risk. If there’s enough science to quantify that, the report will specify a percentage, like “your risk is 3 percent.” If not, it will just say there’s an (unspecified) increased risk. Of course, you can also look it up. For Alzheimer’s, carrying two copies of the Apoe4 variant (one from each parent), as \u003ca href=\"https://science.education.nih.gov/supplements/nih9/bioethics/guide/pdf/Master_4-2.pdf\">1 to 2 percent\u003c/a> of the population does, raises the risk of the disease to as much as 87 percent, for instance, compared to about \u003ca href=\"https://www.statnews.com/2016/11/21/dementia-rate-decline/\">9 percent\u003c/a> in the general population.\u003c/p>\n\u003ch2 class=\"danger-zone\">What diseases can 23andMe tell me about?\u003c/h2>\n\u003cp class=\"danger-zone\">This month, late-onset Alzheimer’s disease, Parkinson’s disease, the clotting disorder alpha-1 antitrypsin deficiency, and Gaucher disease. Soon — the company hasn’t said exactly when — it will also test for genetic variants linked to factor XI deficiency (excessive bleeding), celiac disease, anemia-causing G6PD deficiency, the movement disorder early-onset primary dystonia, and the blood illness hereditary hemochromatosis.\u003c/p>\n\u003ch2>Will the test tell me if I’m doomed to get one of these terrible disorders?\u003c/h2>\n\u003cp>No. None of the genetic variants that 23andMe tests for is what’s called “fully penetrant,” meaning that 100 percent of those who carry the variant develop the disease. By not “fully,” we mean \u003cem>really\u003c/em> not fully, as in the risk might be measured in the single-digit percentages. “It’s important for people to know that even if they have a mutation in the genes [associated with Parkinson’s that 23andMe will test for], by and large they won’t get Parkinson’s disease,” said James Beck, chief scientific officer of the Parkinson’s Foundation. The N370S variant in the GBA gene, for instance, triples the risk of Parkinson’s, Beck said, but with a baseline risk of 0.3 percent that means about a 1 percent risk.\u003c/p>\n\u003ch2>Do these tests work better for some ethnic groups than others?\u003c/h2>\n\u003cp>Geneticists have studied more people of European descent than other groups, so they have more data on white people. 23andMe knows this, so its reports will include warnings such as that the test results are “most relevant for people of European descent” (for Alzheimer’s), “. . . for people of European, Ashkenazi Jewish, and North African Berber descent” (for Parkinson’s), and “. . . for people of Ashkenazi Jewish descent” (Factor XI Deficiency). With Alzheimer’s, the effect of the ApoE4 variant is weaker in African-Americans, for instance.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>\u003cspan style=\"font-weight: 400\">This \u003ca href=\"https://www.statnews.com/2017/04/07/genetic-analysis-need-to-know/\" target=\"_blank\">story\u003c/a> was originally published by STAT, an online publication of Boston Globe Media that covers health, medicine, and scientific discovery.\u003c/span>\u003c/em>\u003c/p>\n\n","blocks":[],"excerpt":"The genetic testing company 23andMe has received FDA approval to sell genetic reports on an individual’s risk for 10 diseases, including Alzheimer’s and Parkinson’s. ","status":"publish","parent":0,"modified":1491589649,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":6,"wordCount":638},"headData":{"title":"What a 23andMe Disease Risk Report Can Tell You and What It Can't | KQED","description":"The genetic testing company 23andMe has received FDA approval to sell genetic reports on an individual’s risk for 10 diseases, including Alzheimer’s and Parkinson’s. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"What a 23andMe Disease Risk Report Can Tell You and What It Can't","datePublished":"2017-04-07T17:20:58.000Z","dateModified":"2017-04-07T18:27:29.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"368185 https://ww2.kqed.org/futureofyou/?p=368185","disqusUrl":"https://ww2.kqed.org/futureofyou/2017/04/07/what-the-23andme-disease-risk-reports-can-tell-you-and-what-they-cant/","disqusTitle":"What a 23andMe Disease Risk Report Can Tell You and What It Can't","source":"KQED Future of You","nprByline":"Sharon Begley\u003cbr />\u003ca href=\"https://www.statnews.com/\">STAT\u003c/a>","path":"/futureofyou/368185/what-the-23andme-disease-risk-reports-can-tell-you-and-what-they-cant","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp class=\"danger-zone\">The genetic testing company 23andMe received \u003ca href=\"https://www.statnews.com/2017/04/06/genetic-test-alzheimers/\">approval\u003c/a> this week from regulators to sell genetic reports on an individual’s risk for 10 diseases, most prominently Alzheimer’s and Parkinson’s. Before you send in your saliva sample and $199, here’s what you should know:\u003c/p>\n\u003ch2 class=\"danger-zone\">What will a genetic test actually tell me?\u003c/h2>\n\u003cp class=\"danger-zone\">At most, that you carry a DNA variant that, according to research, is associated with a higher risk of a disease. For the rare clotting disorder hereditary thrombophilia, for instance, the report will say that you do or do not carry a variant called Factor V Leiden in the F5 gene and a variant called Prothrombin G20210A in the F2 gene.\u003c/p>\n\u003caside class=\"pullquote alignright\">'It’s important for people to know that even if they have a mutation in the genes [associated with Parkinson’s that 23andMe will test for], by and large they won’t get Parkinson’s disease.'\u003c/aside>\n\u003cp>23and me is still fine-tuning the reports, but its tests will also tell you how the presence (or absence) of variants affects risk. If there’s enough science to quantify that, the report will specify a percentage, like “your risk is 3 percent.” If not, it will just say there’s an (unspecified) increased risk. Of course, you can also look it up. For Alzheimer’s, carrying two copies of the Apoe4 variant (one from each parent), as \u003ca href=\"https://science.education.nih.gov/supplements/nih9/bioethics/guide/pdf/Master_4-2.pdf\">1 to 2 percent\u003c/a> of the population does, raises the risk of the disease to as much as 87 percent, for instance, compared to about \u003ca href=\"https://www.statnews.com/2016/11/21/dementia-rate-decline/\">9 percent\u003c/a> in the general population.\u003c/p>\n\u003ch2 class=\"danger-zone\">What diseases can 23andMe tell me about?\u003c/h2>\n\u003cp class=\"danger-zone\">This month, late-onset Alzheimer’s disease, Parkinson’s disease, the clotting disorder alpha-1 antitrypsin deficiency, and Gaucher disease. Soon — the company hasn’t said exactly when — it will also test for genetic variants linked to factor XI deficiency (excessive bleeding), celiac disease, anemia-causing G6PD deficiency, the movement disorder early-onset primary dystonia, and the blood illness hereditary hemochromatosis.\u003c/p>\n\u003ch2>Will the test tell me if I’m doomed to get one of these terrible disorders?\u003c/h2>\n\u003cp>No. None of the genetic variants that 23andMe tests for is what’s called “fully penetrant,” meaning that 100 percent of those who carry the variant develop the disease. By not “fully,” we mean \u003cem>really\u003c/em> not fully, as in the risk might be measured in the single-digit percentages. “It’s important for people to know that even if they have a mutation in the genes [associated with Parkinson’s that 23andMe will test for], by and large they won’t get Parkinson’s disease,” said James Beck, chief scientific officer of the Parkinson’s Foundation. The N370S variant in the GBA gene, for instance, triples the risk of Parkinson’s, Beck said, but with a baseline risk of 0.3 percent that means about a 1 percent risk.\u003c/p>\n\u003ch2>Do these tests work better for some ethnic groups than others?\u003c/h2>\n\u003cp>Geneticists have studied more people of European descent than other groups, so they have more data on white people. 23andMe knows this, so its reports will include warnings such as that the test results are “most relevant for people of European descent” (for Alzheimer’s), “. . . for people of European, Ashkenazi Jewish, and North African Berber descent” (for Parkinson’s), and “. . . for people of Ashkenazi Jewish descent” (Factor XI Deficiency). With Alzheimer’s, the effect of the ApoE4 variant is weaker in African-Americans, for instance.\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>\u003c/p>\n\u003cp>\u003cem>\u003cspan style=\"font-weight: 400\">This \u003ca href=\"https://www.statnews.com/2017/04/07/genetic-analysis-need-to-know/\" target=\"_blank\">story\u003c/a> was originally published by STAT, an online publication of Boston Globe Media that covers health, medicine, and scientific discovery.\u003c/span>\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/368185/what-the-23andme-disease-risk-reports-can-tell-you-and-what-they-cant","authors":["byline_futureofyou_368185"],"categories":["futureofyou_452","futureofyou_1062","futureofyou_1","futureofyou_73","futureofyou_1064"],"tags":["futureofyou_15","futureofyou_999","futureofyou_1243","futureofyou_120","futureofyou_80","futureofyou_1242","futureofyou_724"],"featImg":"futureofyou_368188","label":"source_futureofyou_368185"},"futureofyou_224250":{"type":"posts","id":"futureofyou_224250","meta":{"index":"posts_1591205157","site":"futureofyou","id":"224250","score":null,"sort":[1471542924000]},"guestAuthors":[],"slug":"23andme-crowdsources-hundreds-of-thousands-of-customers-to-find-depression-link","title":"23andMe Crowdsources Customers' Genetic Data to Find Depression Link","publishDate":1471542924,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>A \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/27479909\">study\u003c/a> from the consumer genetic-testing company \u003ca href=\"https://www.23andme.com/\">23andMe\u003c/a> and pharmaceutical giant \u003ca href=\"http://www.pfizer.com/\">Pfizer\u003c/a> has found 15 new DNA regions associated with mutations that could predispose individuals to major depression.\u003c/p>\n\u003caside class=\"pullquote alignright\">The study was huge, looking at the DNA of over 300,000 people. Pfizer and other companies have been lining up to gain access to 23andMe's trove of genetic data.\u003c/aside>\n\u003cp>The study was huge: Researchers took the DNA of over 75,000 people who reported being clinically diagnosed with depression and compared it with more than 230,000 customers who reported no such diagnosis.\u003c/p>\n\u003cp>The 15 regions in the scrutinized DNA are the first to be linked to major depression in people of European descent. A previous \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/26176920\">study \u003c/a>looking at over 10,000 people of Han Chinese ancestry found two such regions, but those are insignificant in people whose ancestors are from Europe.\u003c/p>\n\u003cp>[contextly_sidebar id=\"XDX5gp8Cm1U2zHm2QCy38vPPyPcK5Wof\"]This type of DNA analysis does not usually find the exact gene or mutation involved in a disease or condition, but it does narrow down considerably the areas in which to look. The 23andMe research will allow scientists to study a handful of locations from different DNA regions, instead of looking at all 20,000 human genes.\u003c/p>\n\u003cp>Because depression is so complicated genetically, the discovery is unlikely to prove useful as a predictive tool. Meaning, the research won’t be turned into a genetic test anytime soon. But what it can do is give scientists a deeper understanding of how major depression works.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>This is becoming a common theme in genetic studies of complex diseases like major depression, type 2 diabetes and heart disease. Rather than leading to predictive genetic tests, the studies are bringing a better understanding of what causes the illness, opening up new approaches to treatment.\u003c/p>\n\u003cp>\u003cstrong>A Combo of Genes\u003c/strong>\u003c/p>\n\u003cp>In the U.S., an estimated 15.7 million adults aged 18 or older have suffered at least one major depressive episode in the past year, \u003ca href=\"http://www.nimh.nih.gov/health/statistics/prevalence/major-depression-among-adults.shtml\" target=\"_blank\">according to\u003c/a> the National Institute of Mental Health.\u003c/p>\n\u003cp>Over the last 70 years, scientists have used twin, family and adoption studies to figure out that the risk of experiencing major depression is roughly half genetic\u003cstrong> -- \u003c/strong> \u003ca href=\"http://depressiongenetics.stanford.edu/mddandgenes.html\">somewhere around 40-50\u003c/a> percent -- while the rest is due to environmental factors, such as emotional abuse or neglect.\u003c/p>\n\u003cp>Because we have studied depression for so long, you might think we would have uncovered the guilty gene by now. And we probably would have if there were a single culprit.\u003c/p>\n\u003cp>But it turns out it's the combination of many different genes working in concert that creates someone's risk for the disorder. Thus, two people suffering from major depression may have acquired it for completely different genetic reasons. Add to that all kinds of different environmental factors, and you start to get a feel for what a daunting task homing in on the exact causes of depression are.\u003c/p>\n\u003cp>The 23andMe study, however, could at least bring us closer.\u003c/p>\n\u003cfigure id=\"attachment_224921\" class=\"wp-caption aligncenter\" style=\"max-width: 750px\">\u003cimg class=\"size-full wp-image-224921\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/08/Crowd23andMe.jpg\" alt=\"You need a lot of people to find genes involved in complex diseases. (Pixabay)\" width=\"750\" height=\"316\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/08/Crowd23andMe.jpg 750w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/Crowd23andMe-400x169.jpg 400w\" sizes=\"(max-width: 750px) 100vw, 750px\">\u003cfigcaption class=\"wp-caption-text\">You need a lot of people to find genes involved in complex diseases. (\u003ca href=\"https://pixabay.com/static/uploads/photo/2015/01/08/11/08/human-592734_960_720.jpg\">Pixabay\u003c/a>)\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Profitable Crowdsourcing\u003c/strong>\u003c/p>\n\u003cp>23andMe is a consumer genetics company that analyzes your DNA and reports back on your health and ancestry. To date it has accumulated data from over one million of its customers, 850,000 of whom have given the company permission to use their genetic profile for research.\u003c/p>\n\u003cp>This database, combined with participants' self reporting of health conditions like depression, is one of the largest repository of individuals' genetic data in the world. Such a large sample allows scientists to detect patterns that often remain hidden when analyzing a smaller number of participants.\u003c/p>\n\u003cp>Corporations and universities are ponying up to access this trove. In 2015 it was \u003ca href=\"http://venturebeat.com/2015/01/14/23andme-has-signed-12-other-genetic-data-partnerships-beyond-pfizer-and-genentech/\">reported \u003c/a>that 14 universities and companies, including heavy hitters like Genentech and Pfizer, had signed up for access.\u003c/p>\n\u003cp>Companies like 23andMe have sometimes been \u003ca href=\"http://www.nytimes.com/roomfordebate/2015/03/02/23andme-and-the-promise-of-anonymous-genetic-testing-10/23andmes-dangerous-business-model-17\" target=\"_blank\">criticized\u003c/a> for what detractors would call an exploitation of people's genetic data for commercial purposes.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>But if the collaborations do lead to new treatments for devastating diseases, some of that criticism may go by the wayside.\u003c/p>\n\n","blocks":[],"excerpt":"A study from the consumer genetic-testing company 23andMe and pharmaceutical giant Pfizer looked at the DNA of over 300,000 people.","status":"publish","parent":0,"modified":1475113172,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":20,"wordCount":733},"headData":{"title":"23andMe Crowdsources Customers' Genetic Data to Find Depression Link | KQED","description":"A study from the consumer genetic-testing company 23andMe and pharmaceutical giant Pfizer looked at the DNA of over 300,000 people.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"23andMe Crowdsources Customers' Genetic Data to Find Depression Link","datePublished":"2016-08-18T17:55:24.000Z","dateModified":"2016-09-29T01:39:32.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"224250 http://ww2.kqed.org/futureofyou/?p=224250","disqusUrl":"https://ww2.kqed.org/futureofyou/2016/08/18/23andme-crowdsources-hundreds-of-thousands-of-customers-to-find-depression-link/","disqusTitle":"23andMe Crowdsources Customers' Genetic Data to Find Depression Link","source":"Future of You","nprByline":"Barry Starr\u003cbr /> Tech Museum and Stanford University","path":"/futureofyou/224250/23andme-crowdsources-hundreds-of-thousands-of-customers-to-find-depression-link","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>A \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/27479909\">study\u003c/a> from the consumer genetic-testing company \u003ca href=\"https://www.23andme.com/\">23andMe\u003c/a> and pharmaceutical giant \u003ca href=\"http://www.pfizer.com/\">Pfizer\u003c/a> has found 15 new DNA regions associated with mutations that could predispose individuals to major depression.\u003c/p>\n\u003caside class=\"pullquote alignright\">The study was huge, looking at the DNA of over 300,000 people. Pfizer and other companies have been lining up to gain access to 23andMe's trove of genetic data.\u003c/aside>\n\u003cp>The study was huge: Researchers took the DNA of over 75,000 people who reported being clinically diagnosed with depression and compared it with more than 230,000 customers who reported no such diagnosis.\u003c/p>\n\u003cp>The 15 regions in the scrutinized DNA are the first to be linked to major depression in people of European descent. A previous \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/26176920\">study \u003c/a>looking at over 10,000 people of Han Chinese ancestry found two such regions, but those are insignificant in people whose ancestors are from Europe.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>This type of DNA analysis does not usually find the exact gene or mutation involved in a disease or condition, but it does narrow down considerably the areas in which to look. The 23andMe research will allow scientists to study a handful of locations from different DNA regions, instead of looking at all 20,000 human genes.\u003c/p>\n\u003cp>Because depression is so complicated genetically, the discovery is unlikely to prove useful as a predictive tool. Meaning, the research won’t be turned into a genetic test anytime soon. But what it can do is give scientists a deeper understanding of how major depression works.\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>This is becoming a common theme in genetic studies of complex diseases like major depression, type 2 diabetes and heart disease. Rather than leading to predictive genetic tests, the studies are bringing a better understanding of what causes the illness, opening up new approaches to treatment.\u003c/p>\n\u003cp>\u003cstrong>A Combo of Genes\u003c/strong>\u003c/p>\n\u003cp>In the U.S., an estimated 15.7 million adults aged 18 or older have suffered at least one major depressive episode in the past year, \u003ca href=\"http://www.nimh.nih.gov/health/statistics/prevalence/major-depression-among-adults.shtml\" target=\"_blank\">according to\u003c/a> the National Institute of Mental Health.\u003c/p>\n\u003cp>Over the last 70 years, scientists have used twin, family and adoption studies to figure out that the risk of experiencing major depression is roughly half genetic\u003cstrong> -- \u003c/strong> \u003ca href=\"http://depressiongenetics.stanford.edu/mddandgenes.html\">somewhere around 40-50\u003c/a> percent -- while the rest is due to environmental factors, such as emotional abuse or neglect.\u003c/p>\n\u003cp>Because we have studied depression for so long, you might think we would have uncovered the guilty gene by now. And we probably would have if there were a single culprit.\u003c/p>\n\u003cp>But it turns out it's the combination of many different genes working in concert that creates someone's risk for the disorder. Thus, two people suffering from major depression may have acquired it for completely different genetic reasons. Add to that all kinds of different environmental factors, and you start to get a feel for what a daunting task homing in on the exact causes of depression are.\u003c/p>\n\u003cp>The 23andMe study, however, could at least bring us closer.\u003c/p>\n\u003cfigure id=\"attachment_224921\" class=\"wp-caption aligncenter\" style=\"max-width: 750px\">\u003cimg class=\"size-full wp-image-224921\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/08/Crowd23andMe.jpg\" alt=\"You need a lot of people to find genes involved in complex diseases. (Pixabay)\" width=\"750\" height=\"316\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/08/Crowd23andMe.jpg 750w, https://ww2.kqed.org/app/uploads/sites/13/2016/08/Crowd23andMe-400x169.jpg 400w\" sizes=\"(max-width: 750px) 100vw, 750px\">\u003cfigcaption class=\"wp-caption-text\">You need a lot of people to find genes involved in complex diseases. (\u003ca href=\"https://pixabay.com/static/uploads/photo/2015/01/08/11/08/human-592734_960_720.jpg\">Pixabay\u003c/a>)\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Profitable Crowdsourcing\u003c/strong>\u003c/p>\n\u003cp>23andMe is a consumer genetics company that analyzes your DNA and reports back on your health and ancestry. To date it has accumulated data from over one million of its customers, 850,000 of whom have given the company permission to use their genetic profile for research.\u003c/p>\n\u003cp>This database, combined with participants' self reporting of health conditions like depression, is one of the largest repository of individuals' genetic data in the world. Such a large sample allows scientists to detect patterns that often remain hidden when analyzing a smaller number of participants.\u003c/p>\n\u003cp>Corporations and universities are ponying up to access this trove. In 2015 it was \u003ca href=\"http://venturebeat.com/2015/01/14/23andme-has-signed-12-other-genetic-data-partnerships-beyond-pfizer-and-genentech/\">reported \u003c/a>that 14 universities and companies, including heavy hitters like Genentech and Pfizer, had signed up for access.\u003c/p>\n\u003cp>Companies like 23andMe have sometimes been \u003ca href=\"http://www.nytimes.com/roomfordebate/2015/03/02/23andme-and-the-promise-of-anonymous-genetic-testing-10/23andmes-dangerous-business-model-17\" target=\"_blank\">criticized\u003c/a> for what detractors would call an exploitation of people's genetic data for commercial purposes.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>But if the collaborations do lead to new treatments for devastating diseases, some of that criticism may go by the wayside.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/224250/23andme-crowdsources-hundreds-of-thousands-of-customers-to-find-depression-link","authors":["byline_futureofyou_224250"],"categories":["futureofyou_1064"],"tags":["futureofyou_15","futureofyou_124","futureofyou_120","futureofyou_80"],"featImg":"futureofyou_225685","label":"source_futureofyou_224250"},"futureofyou_124434":{"type":"posts","id":"futureofyou_124434","meta":{"index":"posts_1591205157","site":"futureofyou","id":"124434","score":null,"sort":[1457553658000]},"guestAuthors":[],"slug":"you-entire-genetic-sequence-now-costs-just-1000-do-you-need-it","title":"What Your Whole Genome Can and Can't Tell You","publishDate":1457553658,"format":"standard","headTitle":"Future of You | KQED Future of You | KQED Science","labelTerm":{"term":54,"site":"futureofyou"},"content":"\u003cp>Last Thursday, Veritas Genetics \u003ca href=\"http://www.prnewswire.com/news-releases/veritas-genetics-launches-999-whole-genome-and-sets-new-standard-for-genetic-testing-300230258.html\" target=\"_blank\">announced\u003c/a> it will make available your entire genetic sequence for just $999. That's all of your body's instructions for making and running the machine known as you for roughly the price of a big-screen TV.\u003c/p>\n\u003caside class=\"pullquote alignright\">If you buy your whole genome, make sure it's been read a minimum of 30 times to ensure accuracy.\u003c/aside>\n\u003cp>The sequencing, which will be available for order on March 30, needs to be requested through a physician. Veritas said you will also receive interpretation and on-demand genetic counseling -- just as important as the sequence itself. After all, without this analysis, you'd be staring at your specific combination of 6 billion or so\u003ca href=\"http://www.nature.com/scitable/content/the-four-bases-atcg-6491969\" target=\"_blank\"> As, Gs, Cs and Ts\u003c/a> with no way to decode it.\u003c/p>\n\u003cp>While Veritas isn't the first company to provide you with access to your DNA, it's the first to offer your whole genome for that low a price. A company called Sure Genomics, for example, launched a \u003ca href=\"http://www.businesswire.com/news/home/20160209005530/en/Genomics-Introduces-Full-DNA-Sequence-Consumers-Delivered\" target=\"_blank\">whole genome service\u003c/a> last month, costing $2,500 plus $150 annually for biannual updated analyses that will take into account newly found genetic markers.\u003c/p>\n\u003cp>Given the complexity of the possible results, it will be interesting to see what you get for such a low price.\u003c/p>\n\u003cp>\u003cstrong>With Genetic Sequencing, Is Less More?\u003c/strong>\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Whole genome sequencing is different than what the company 23andMe offers, for as little as $199. Rather than looking at your entire genome, 23andMe searches for already known genetic variations, like those for cystic fibrosis, sickle cell anemia, and other diseases and traits.\u003c/p>\n\u003cp>Because 23andMe only looks for the parts of your DNA known to be associated with certain traits or diseases, it can’t report on variations that are present but have yet to be determined as significant. Or on rare variants that they know what effect they have but do not test for.\u003c/p>\n\u003cfigure id=\"attachment_125387\" class=\"wp-caption aligncenter\" style=\"max-width: 700px\">\u003cimg class=\"size-full wp-image-125387\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/03/MotherBaby.jpg\" alt=\"You are special and so is your DNA. (Pixabay)\" width=\"700\" height=\"466\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/03/MotherBaby.jpg 700w, https://ww2.kqed.org/app/uploads/sites/13/2016/03/MotherBaby-400x266.jpg 400w\" sizes=\"(max-width: 700px) 100vw, 700px\">\u003cfigcaption class=\"wp-caption-text\">You are special and so is your DNA. (\u003ca href=\"https://pixabay.com/en/baby-care-caucasian-cheek-child-17327/\">Pixabay\u003c/a>) \u003ccite>(Pixabay)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Remember how your mom told you you're \"special.\" Well, that's technically true, because everyone’s DNA is unique.\u003c/p>\n\u003cp>But it also means scientists trying to interpret vast stretches of your genetic code is like Egyptologists staring at hieroglyphics without the benefit of the Rosetta Stone. So even though your entire genome has the potential to one day tell you a whole lot about yourself, currently it's not saying much. And anyone looking at it won't know how or whether the majority of combinations in your genetic code determine your health and other traits.\u003c/p>\n\u003cp>For example, if a unique sequence falls within a gene implicated in a disease, then you may or may not be at a higher risk for that disease. Sometimes scientists can make a reasonable prediction, but often they can’t. Now imagine these types of unknowns strewn throughout your genome.\u003c/p>\n\u003cp>But this will not always be the case. As scientists learn more and more about what different parts of the human genome can tell us, your own sequence will become more and more communicative, so to speak. Meaning one day, that information could be found to impact your health.\u003c/p>\n\u003cp>\u003cstrong>You Need Coverage\u003c/strong>\u003c/p>\n\u003cp>If you do choose to spend more money to explore the unknown reaches of your genome, you want to make sure that data is high quality. Good quality genomes don’t contain a lot of mistakes, and they aren’t missing big sections.\u003c/p>\n\u003cp>The key thing to look for is something called \"coverage.\"\u003c/p>\n\u003cp>Basically, coverage is how many times on average your genome has been read. One rule of thumb: If a whole genome sequence (WGS) is going to be used to predict individual characteristics, it should be read a \u003ca href=\"http://www.ccmb.med.umich.edu/node/1186\">bare minimum of 30 times\u003c/a>.\u003c/p>\n\u003cp>Dr. Michael Snyder, chair of the Department of Genetics at Stanford University, says even more is better. \"I would do at least 60X and even that will not give adequate coverage in a lot of regions.\"\u003c/p>\n\u003cp>Why do scientists need to read the same DNA over and over again? Mainly because while new technologies have made sequencing much cheaper, they have also made it vulnerable to a greater number of mistakes. Scientists now need a lot of reads to ensure the sequence is correct.\u003c/p>\n\u003cp>Another reason so many reads are required is that some parts of the genome just don’t sequence very well. You need to do a lot of sequencing to get these regions to appear in the data.\u003c/p>\n\u003cp>\u003cstrong>More than DNA\u003c/strong>\u003c/p>\n\u003cp>Of course with Veritas and other services that provide you with your entire genome, you are paying for more than your genetic code. You are also paying for the interpretation and the counseling that comes with your results.\u003c/p>\n\u003cp>How valuable that is to you will depend on which results the company interprets, how much counseling it will offer, and, finally, how you will respond to the data. Handled right, information about your genetic predispositions can be extremely helpful. But handled poorly, it can be confusing, worrying, and perhaps lead to \u003ca href=\"http://ww2.kqed.org/futureofyou/2016/02/08/student-was-asked-to-leave-school-because-of-his-dna/\" target=\"_blank\">unintended consequences\u003c/a>.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>They say a little information can be dangerous. But too much can be overwhelming.\u003c/p>\n\n","blocks":[],"excerpt":"Veritas Genetics will do whole genome sequencing for just $999. Here's what that can and can't tell you.","status":"publish","parent":0,"modified":1476934885,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":24,"wordCount":908},"headData":{"title":"What Your Whole Genome Can and Can't Tell You | KQED","description":"Veritas Genetics will do whole genome sequencing for just $999. Here's what that can and can't tell you.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"What Your Whole Genome Can and Can't Tell You","datePublished":"2016-03-09T20:00:58.000Z","dateModified":"2016-10-20T03:41:25.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"124434 http://ww2.kqed.org/futureofyou/?p=124434","disqusUrl":"https://ww2.kqed.org/futureofyou/2016/03/09/you-entire-genetic-sequence-now-costs-just-1000-do-you-need-it/","disqusTitle":"What Your Whole Genome Can and Can't Tell You","path":"/futureofyou/124434/you-entire-genetic-sequence-now-costs-just-1000-do-you-need-it","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Last Thursday, Veritas Genetics \u003ca href=\"http://www.prnewswire.com/news-releases/veritas-genetics-launches-999-whole-genome-and-sets-new-standard-for-genetic-testing-300230258.html\" target=\"_blank\">announced\u003c/a> it will make available your entire genetic sequence for just $999. That's all of your body's instructions for making and running the machine known as you for roughly the price of a big-screen TV.\u003c/p>\n\u003caside class=\"pullquote alignright\">If you buy your whole genome, make sure it's been read a minimum of 30 times to ensure accuracy.\u003c/aside>\n\u003cp>The sequencing, which will be available for order on March 30, needs to be requested through a physician. Veritas said you will also receive interpretation and on-demand genetic counseling -- just as important as the sequence itself. After all, without this analysis, you'd be staring at your specific combination of 6 billion or so\u003ca href=\"http://www.nature.com/scitable/content/the-four-bases-atcg-6491969\" target=\"_blank\"> As, Gs, Cs and Ts\u003c/a> with no way to decode it.\u003c/p>\n\u003cp>While Veritas isn't the first company to provide you with access to your DNA, it's the first to offer your whole genome for that low a price. A company called Sure Genomics, for example, launched a \u003ca href=\"http://www.businesswire.com/news/home/20160209005530/en/Genomics-Introduces-Full-DNA-Sequence-Consumers-Delivered\" target=\"_blank\">whole genome service\u003c/a> last month, costing $2,500 plus $150 annually for biannual updated analyses that will take into account newly found genetic markers.\u003c/p>\n\u003cp>Given the complexity of the possible results, it will be interesting to see what you get for such a low price.\u003c/p>\n\u003cp>\u003cstrong>With Genetic Sequencing, Is Less More?\u003c/strong>\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>Whole genome sequencing is different than what the company 23andMe offers, for as little as $199. Rather than looking at your entire genome, 23andMe searches for already known genetic variations, like those for cystic fibrosis, sickle cell anemia, and other diseases and traits.\u003c/p>\n\u003cp>Because 23andMe only looks for the parts of your DNA known to be associated with certain traits or diseases, it can’t report on variations that are present but have yet to be determined as significant. Or on rare variants that they know what effect they have but do not test for.\u003c/p>\n\u003cfigure id=\"attachment_125387\" class=\"wp-caption aligncenter\" style=\"max-width: 700px\">\u003cimg class=\"size-full wp-image-125387\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/03/MotherBaby.jpg\" alt=\"You are special and so is your DNA. (Pixabay)\" width=\"700\" height=\"466\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/03/MotherBaby.jpg 700w, https://ww2.kqed.org/app/uploads/sites/13/2016/03/MotherBaby-400x266.jpg 400w\" sizes=\"(max-width: 700px) 100vw, 700px\">\u003cfigcaption class=\"wp-caption-text\">You are special and so is your DNA. (\u003ca href=\"https://pixabay.com/en/baby-care-caucasian-cheek-child-17327/\">Pixabay\u003c/a>) \u003ccite>(Pixabay)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Remember how your mom told you you're \"special.\" Well, that's technically true, because everyone’s DNA is unique.\u003c/p>\n\u003cp>But it also means scientists trying to interpret vast stretches of your genetic code is like Egyptologists staring at hieroglyphics without the benefit of the Rosetta Stone. So even though your entire genome has the potential to one day tell you a whole lot about yourself, currently it's not saying much. And anyone looking at it won't know how or whether the majority of combinations in your genetic code determine your health and other traits.\u003c/p>\n\u003cp>For example, if a unique sequence falls within a gene implicated in a disease, then you may or may not be at a higher risk for that disease. Sometimes scientists can make a reasonable prediction, but often they can’t. Now imagine these types of unknowns strewn throughout your genome.\u003c/p>\n\u003cp>But this will not always be the case. As scientists learn more and more about what different parts of the human genome can tell us, your own sequence will become more and more communicative, so to speak. Meaning one day, that information could be found to impact your health.\u003c/p>\n\u003cp>\u003cstrong>You Need Coverage\u003c/strong>\u003c/p>\n\u003cp>If you do choose to spend more money to explore the unknown reaches of your genome, you want to make sure that data is high quality. Good quality genomes don’t contain a lot of mistakes, and they aren’t missing big sections.\u003c/p>\n\u003cp>The key thing to look for is something called \"coverage.\"\u003c/p>\n\u003cp>Basically, coverage is how many times on average your genome has been read. One rule of thumb: If a whole genome sequence (WGS) is going to be used to predict individual characteristics, it should be read a \u003ca href=\"http://www.ccmb.med.umich.edu/node/1186\">bare minimum of 30 times\u003c/a>.\u003c/p>\n\u003cp>Dr. Michael Snyder, chair of the Department of Genetics at Stanford University, says even more is better. \"I would do at least 60X and even that will not give adequate coverage in a lot of regions.\"\u003c/p>\n\u003cp>Why do scientists need to read the same DNA over and over again? Mainly because while new technologies have made sequencing much cheaper, they have also made it vulnerable to a greater number of mistakes. Scientists now need a lot of reads to ensure the sequence is correct.\u003c/p>\n\u003cp>Another reason so many reads are required is that some parts of the genome just don’t sequence very well. You need to do a lot of sequencing to get these regions to appear in the data.\u003c/p>\n\u003cp>\u003cstrong>More than DNA\u003c/strong>\u003c/p>\n\u003cp>Of course with Veritas and other services that provide you with your entire genome, you are paying for more than your genetic code. You are also paying for the interpretation and the counseling that comes with your results.\u003c/p>\n\u003cp>How valuable that is to you will depend on which results the company interprets, how much counseling it will offer, and, finally, how you will respond to the data. Handled right, information about your genetic predispositions can be extremely helpful. But handled poorly, it can be confusing, worrying, and perhaps lead to \u003ca href=\"http://ww2.kqed.org/futureofyou/2016/02/08/student-was-asked-to-leave-school-because-of-his-dna/\" target=\"_blank\">unintended consequences\u003c/a>.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>They say a little information can be dangerous. But too much can be overwhelming.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/124434/you-entire-genetic-sequence-now-costs-just-1000-do-you-need-it","authors":["6177"],"programs":["futureofyou_54"],"categories":["futureofyou_1064"],"tags":["futureofyou_15","futureofyou_20","futureofyou_797","futureofyou_44"],"featImg":"futureofyou_125362","label":"futureofyou_54"},"futureofyou_55240":{"type":"posts","id":"futureofyou_55240","meta":{"index":"posts_1591205157","site":"futureofyou","id":"55240","score":null,"sort":[1445443790000]},"guestAuthors":[],"slug":"its-back-23andme-relaunches-its-consumer-gene-test","title":"It's Back, 23andMe Relaunches Its Consumer Gene Test","publishDate":1445443790,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>The genetic testing service \u003ca href=\"https://www.23andme.com\">23andMe\u003c/a> has relaunched a controversial test that, using just a few drops of spit, can tell you if you're a carrier for dozens of diseases.\u003c/p>\n\u003cp>It's not as extensive as its previous service, which could screen for hundreds of health risks, but the new modified test is approved by federal regulators, clearing a major hurdle that had placed the company's future in doubt.\u003c/p>\n\u003cp>In November of 2013, the startup was hit with \u003ca href=\"http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2013/ucm376296.htm\">a warning letter \u003c/a>from the Food and Drug Administration, ordering the company to stop selling and marketing its personal genome service, which tested for risks associated with diseases like breast cancer and Parkinson's Disease. While the company pondered how to prove the accuracy of its product to the FDA's satisfaction, 23andMe stripped down its genetic test to only deliver raw genetic data and ancestry information. The sales of its testing kits dropped.\u003c/p>\n\u003cp>\"We didn't understand the implications of that letter,\" said 23andMe's president Andy Page, in an interview earlier this week. \"We needed to hire a lot of people to get us back on track.\"\u003c/p>\n\u003cp>Since then, 23andMe has worked closely with regulators to bring its full test back to market. Earlier this year\u003cspan style=\"line-height: 1.5\">, the FDA approved its \u003c/span>\u003cspan style=\"line-height: 1.5\">carrier test\u003c/span>\u003cspan style=\"line-height: 1.5\"> for Bloom Syndrome, a rare disease associated with short stature and a higher cancer risk. At the time the FDA said it would not review other such carrier screening tests, clearing the way for the company to resume offering some health information.\u003c/span>\u003c/p>\n\u003cfigure id=\"attachment_55241\" class=\"wp-caption alignright\" style=\"max-width: 370px\">\u003cimg class=\" wp-image-55241\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/10/qDZjMl9WskAOEMsDU6M2BTlV1t_13PWBQqqsyieIlNo-785x600.png\" alt=\"The new test offers colorful reports about your ancestry and family history.\" width=\"370\" height=\"283\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/10/qDZjMl9WskAOEMsDU6M2BTlV1t_13PWBQqqsyieIlNo-785x600.png 785w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/qDZjMl9WskAOEMsDU6M2BTlV1t_13PWBQqqsyieIlNo-400x306.png 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/qDZjMl9WskAOEMsDU6M2BTlV1t_13PWBQqqsyieIlNo-960x734.png 960w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/qDZjMl9WskAOEMsDU6M2BTlV1t_13PWBQqqsyieIlNo.png 1005w\" sizes=\"(max-width: 370px) 100vw, 370px\">\u003cfigcaption class=\"wp-caption-text\">The new test offers colorful reports about your ancestry and family history. \u003ccite>(23andMe)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Earlier this week, the company walked me through its redesigned product, which is available for $199. 23andMe bills this test as a major improvement on its previous efforts, despite that its roster of health tests is limited. It still doesn't include carrier tests for hereditary breast and ovarian cancer, as well as tests for drug responses and adverse drug reactions. Prior to the regulatory crackdown, 23andMe included these tests and more.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>That said, the new website is better-designed and easier to navigate. The team clearly spent a lot of time replacing scientific jargon with conversational language to avoid confusion. This may well be a response to the FDA's concerns that people will misinterpret their results and take drastic steps, such as an unnecessary test or procedure.\u003c/p>\n\u003cp>23andMe also includes plenty of fun facts that are perfect for dinner party conversation, like the underlying genetic reason that you might be annoyed by the sound of other people chewing. Ancestry is still a major focus for the new test: You can now share and compare your genetic variants with other family-members and access a detailed report on your ethnicity.\u003c/p>\n\u003cp>\u003cstrong>More Than Just a Test \u003c/strong>\u003c/p>\n\u003cfigure id=\"attachment_55242\" class=\"wp-caption alignright\" style=\"max-width: 437px\">\u003cimg class=\" wp-image-55242\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/10/jQZ8kGSufzMG_ZDy7F4jTHGgYJsxALgSdQGWdYM5NEw-800x491.png\" alt=\"23andMe informs you whether you have a variant that is associated with Cystic Fibrosis. \" width=\"437\" height=\"267\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/10/jQZ8kGSufzMG_ZDy7F4jTHGgYJsxALgSdQGWdYM5NEw-800x491.png 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/jQZ8kGSufzMG_ZDy7F4jTHGgYJsxALgSdQGWdYM5NEw-400x245.png 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/jQZ8kGSufzMG_ZDy7F4jTHGgYJsxALgSdQGWdYM5NEw-960x589.png 960w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/jQZ8kGSufzMG_ZDy7F4jTHGgYJsxALgSdQGWdYM5NEw.png 1024w\" sizes=\"(max-width: 437px) 100vw, 437px\">\u003cfigcaption class=\"wp-caption-text\">23andMe informs you whether you have a variant that is associated with Cystic Fibrosis. \u003ccite>(23andMe )\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Only time will tell whether the new product will prove as compelling as 23andMe's original test. For one thing it is more expensive: The previous price point was $99.\u003c/p>\n\u003cp>People who take the test can opt in to clinical studies and research. Those who consent will receive the occasional survey question and an offer to join a clinical trial, according to Page. In the past few years, 23andMe has inked partnerships with a variety of pharmaceutical companies including Pfizer. According to 23andMe's privacy policy, these partners can only access your health data with your consent (with the \u003ca href=\"http://fusion.net/story/215204/law-enforcement-agencies-are-asking-ancestry-com-and-23andme-for-their-customers-dna/\">possible exception \u003c/a>of law enforcement.)\u003c/p>\n\u003cp>23andMe may have made a name for itself with its DNA test, but it is doing a lot of medical research behind the scenes. Given its vast store of patient data -- 1 million customers and counting -- the company is well poised to develop new medications. Page said 23andMe plans to spend some of the \u003ca href=\"http://www.bloomberg.com/news/articles/2015-10-14/23andme-funding-said-to-value-genetics-startup-at-1-1-billion\">$115 million i\u003c/a>t recently raised on two new labs: one for the therapeutics team to experiment with new drugs, and the other to develop more sophisticated gene-sequencing techniques.\u003c/p>\n\u003cp>Page declined to comment on whether 23andMe plans to offer more sophisticated DNA sequencing in the future. At present, it offers genotyping, which looks at genetic variants but not the exact sequence of a length of DNA. Sequencing technology has drastically come down in price in the past decade -- \u003ca href=\"http://www.nature.com/news/technology-the-1-000-genome-1.14901\">you can now sequence your whole genome for $1000\u003c/a> -- but it is still far more expensive than 23andMe's genotyping test.\u003c/p>\n\u003cp>\u003cstrong>The path forward for genetic testing? \u003c/strong>\u003c/p>\n\u003cp>23andMe is just one of a growing number of tests on the market that offer genealogical, health and wellness reports. But what's unique about its test is that the genetic test results are delivered directly to you, rather than through your doctor. \u003ca href=\"https://www.counsyl.com\">Counsyl,\u003c/a> another DNA testing service that is popular with would-be parents, requires a doctor's note.\u003c/p>\n\u003cfigure id=\"attachment_55243\" class=\"wp-caption alignright\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-55243\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/10/FeKg2hXUKZd8E-8GlffcsJ28v9yJz2_L8toiQsuvuZ0-800x521.png\" alt=\"You don't need a doctor's note to purchase 23andMe's genetic testing kit. \" width=\"800\" height=\"521\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/10/FeKg2hXUKZd8E-8GlffcsJ28v9yJz2_L8toiQsuvuZ0-800x521.png 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/FeKg2hXUKZd8E-8GlffcsJ28v9yJz2_L8toiQsuvuZ0-400x261.png 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/FeKg2hXUKZd8E-8GlffcsJ28v9yJz2_L8toiQsuvuZ0-960x625.png 960w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/FeKg2hXUKZd8E-8GlffcsJ28v9yJz2_L8toiQsuvuZ0.png 1024w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">You don't need a doctor's note to purchase 23andMe's genetic testing kit. \u003ccite>(23andMe)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The FDA targeted 23andMe for its direct to consumer approach. But the company has not bowed to pressure from its critics. 23andMe's CEO Anne Wojciki \u003ca href=\"http://ww2.kqed.org/futureofyou/2015/04/10/23andme-ceo-we-are-now-the-poster-child-for-patient-empowerment/\">told me recently\u003c/a> that she is committed to sharing health data directly with consumers, even if it means years of paperwork: \"I’ve said many times that consumers with no background in medicine can understand complicated ideas.\"\u003c/p>\n\u003cp>But some health experts harbor mixed feelings about whether this is the safest approach.\u003c/p>\n\u003cp>Bob Wachter, interim chair of the department of medicine at UCSF, said he was glad the FDA stepped in when it did. But he does believe that 23andMe's approach is the future, especially if they can find a way to work with regulators.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"The pressure over time will be that more health information is available directly to the consumer\" he said. \"But this needs to be tapped periodically to make sure it doesn't get ahead of itself.\"\u003c/p>\n\n","blocks":[],"excerpt":"23andMe has relaunched its service that can tell you if you're a carrier for dozens of diseases with just a few drops of spit. ","status":"publish","parent":0,"modified":1477273648,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":21,"wordCount":1036},"headData":{"title":"It's Back, 23andMe Relaunches Its Consumer Gene Test | KQED","description":"23andMe has relaunched its service that can tell you if you're a carrier for dozens of diseases with just a few drops of spit. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"It's Back, 23andMe Relaunches Its Consumer Gene Test","datePublished":"2015-10-21T16:09:50.000Z","dateModified":"2016-10-24T01:47:28.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"55240 http://ww2.kqed.org/futureofyou/?p=55240","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/10/21/its-back-23andme-relaunches-its-consumer-gene-test/","disqusTitle":"It's Back, 23andMe Relaunches Its Consumer Gene Test","path":"/futureofyou/55240/its-back-23andme-relaunches-its-consumer-gene-test","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>The genetic testing service \u003ca href=\"https://www.23andme.com\">23andMe\u003c/a> has relaunched a controversial test that, using just a few drops of spit, can tell you if you're a carrier for dozens of diseases.\u003c/p>\n\u003cp>It's not as extensive as its previous service, which could screen for hundreds of health risks, but the new modified test is approved by federal regulators, clearing a major hurdle that had placed the company's future in doubt.\u003c/p>\n\u003cp>In November of 2013, the startup was hit with \u003ca href=\"http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2013/ucm376296.htm\">a warning letter \u003c/a>from the Food and Drug Administration, ordering the company to stop selling and marketing its personal genome service, which tested for risks associated with diseases like breast cancer and Parkinson's Disease. While the company pondered how to prove the accuracy of its product to the FDA's satisfaction, 23andMe stripped down its genetic test to only deliver raw genetic data and ancestry information. The sales of its testing kits dropped.\u003c/p>\n\u003cp>\"We didn't understand the implications of that letter,\" said 23andMe's president Andy Page, in an interview earlier this week. \"We needed to hire a lot of people to get us back on track.\"\u003c/p>\n\u003cp>Since then, 23andMe has worked closely with regulators to bring its full test back to market. Earlier this year\u003cspan style=\"line-height: 1.5\">, the FDA approved its \u003c/span>\u003cspan style=\"line-height: 1.5\">carrier test\u003c/span>\u003cspan style=\"line-height: 1.5\"> for Bloom Syndrome, a rare disease associated with short stature and a higher cancer risk. At the time the FDA said it would not review other such carrier screening tests, clearing the way for the company to resume offering some health information.\u003c/span>\u003c/p>\n\u003cfigure id=\"attachment_55241\" class=\"wp-caption alignright\" style=\"max-width: 370px\">\u003cimg class=\" wp-image-55241\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/10/qDZjMl9WskAOEMsDU6M2BTlV1t_13PWBQqqsyieIlNo-785x600.png\" alt=\"The new test offers colorful reports about your ancestry and family history.\" width=\"370\" height=\"283\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/10/qDZjMl9WskAOEMsDU6M2BTlV1t_13PWBQqqsyieIlNo-785x600.png 785w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/qDZjMl9WskAOEMsDU6M2BTlV1t_13PWBQqqsyieIlNo-400x306.png 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/qDZjMl9WskAOEMsDU6M2BTlV1t_13PWBQqqsyieIlNo-960x734.png 960w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/qDZjMl9WskAOEMsDU6M2BTlV1t_13PWBQqqsyieIlNo.png 1005w\" sizes=\"(max-width: 370px) 100vw, 370px\">\u003cfigcaption class=\"wp-caption-text\">The new test offers colorful reports about your ancestry and family history. \u003ccite>(23andMe)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Earlier this week, the company walked me through its redesigned product, which is available for $199. 23andMe bills this test as a major improvement on its previous efforts, despite that its roster of health tests is limited. It still doesn't include carrier tests for hereditary breast and ovarian cancer, as well as tests for drug responses and adverse drug reactions. Prior to the regulatory crackdown, 23andMe included these tests and more.\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>That said, the new website is better-designed and easier to navigate. The team clearly spent a lot of time replacing scientific jargon with conversational language to avoid confusion. This may well be a response to the FDA's concerns that people will misinterpret their results and take drastic steps, such as an unnecessary test or procedure.\u003c/p>\n\u003cp>23andMe also includes plenty of fun facts that are perfect for dinner party conversation, like the underlying genetic reason that you might be annoyed by the sound of other people chewing. Ancestry is still a major focus for the new test: You can now share and compare your genetic variants with other family-members and access a detailed report on your ethnicity.\u003c/p>\n\u003cp>\u003cstrong>More Than Just a Test \u003c/strong>\u003c/p>\n\u003cfigure id=\"attachment_55242\" class=\"wp-caption alignright\" style=\"max-width: 437px\">\u003cimg class=\" wp-image-55242\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/10/jQZ8kGSufzMG_ZDy7F4jTHGgYJsxALgSdQGWdYM5NEw-800x491.png\" alt=\"23andMe informs you whether you have a variant that is associated with Cystic Fibrosis. \" width=\"437\" height=\"267\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/10/jQZ8kGSufzMG_ZDy7F4jTHGgYJsxALgSdQGWdYM5NEw-800x491.png 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/jQZ8kGSufzMG_ZDy7F4jTHGgYJsxALgSdQGWdYM5NEw-400x245.png 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/jQZ8kGSufzMG_ZDy7F4jTHGgYJsxALgSdQGWdYM5NEw-960x589.png 960w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/jQZ8kGSufzMG_ZDy7F4jTHGgYJsxALgSdQGWdYM5NEw.png 1024w\" sizes=\"(max-width: 437px) 100vw, 437px\">\u003cfigcaption class=\"wp-caption-text\">23andMe informs you whether you have a variant that is associated with Cystic Fibrosis. \u003ccite>(23andMe )\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Only time will tell whether the new product will prove as compelling as 23andMe's original test. For one thing it is more expensive: The previous price point was $99.\u003c/p>\n\u003cp>People who take the test can opt in to clinical studies and research. Those who consent will receive the occasional survey question and an offer to join a clinical trial, according to Page. In the past few years, 23andMe has inked partnerships with a variety of pharmaceutical companies including Pfizer. According to 23andMe's privacy policy, these partners can only access your health data with your consent (with the \u003ca href=\"http://fusion.net/story/215204/law-enforcement-agencies-are-asking-ancestry-com-and-23andme-for-their-customers-dna/\">possible exception \u003c/a>of law enforcement.)\u003c/p>\n\u003cp>23andMe may have made a name for itself with its DNA test, but it is doing a lot of medical research behind the scenes. Given its vast store of patient data -- 1 million customers and counting -- the company is well poised to develop new medications. Page said 23andMe plans to spend some of the \u003ca href=\"http://www.bloomberg.com/news/articles/2015-10-14/23andme-funding-said-to-value-genetics-startup-at-1-1-billion\">$115 million i\u003c/a>t recently raised on two new labs: one for the therapeutics team to experiment with new drugs, and the other to develop more sophisticated gene-sequencing techniques.\u003c/p>\n\u003cp>Page declined to comment on whether 23andMe plans to offer more sophisticated DNA sequencing in the future. At present, it offers genotyping, which looks at genetic variants but not the exact sequence of a length of DNA. Sequencing technology has drastically come down in price in the past decade -- \u003ca href=\"http://www.nature.com/news/technology-the-1-000-genome-1.14901\">you can now sequence your whole genome for $1000\u003c/a> -- but it is still far more expensive than 23andMe's genotyping test.\u003c/p>\n\u003cp>\u003cstrong>The path forward for genetic testing? \u003c/strong>\u003c/p>\n\u003cp>23andMe is just one of a growing number of tests on the market that offer genealogical, health and wellness reports. But what's unique about its test is that the genetic test results are delivered directly to you, rather than through your doctor. \u003ca href=\"https://www.counsyl.com\">Counsyl,\u003c/a> another DNA testing service that is popular with would-be parents, requires a doctor's note.\u003c/p>\n\u003cfigure id=\"attachment_55243\" class=\"wp-caption alignright\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-55243\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/10/FeKg2hXUKZd8E-8GlffcsJ28v9yJz2_L8toiQsuvuZ0-800x521.png\" alt=\"You don't need a doctor's note to purchase 23andMe's genetic testing kit. \" width=\"800\" height=\"521\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/10/FeKg2hXUKZd8E-8GlffcsJ28v9yJz2_L8toiQsuvuZ0-800x521.png 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/FeKg2hXUKZd8E-8GlffcsJ28v9yJz2_L8toiQsuvuZ0-400x261.png 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/FeKg2hXUKZd8E-8GlffcsJ28v9yJz2_L8toiQsuvuZ0-960x625.png 960w, https://ww2.kqed.org/app/uploads/sites/13/2015/10/FeKg2hXUKZd8E-8GlffcsJ28v9yJz2_L8toiQsuvuZ0.png 1024w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">You don't need a doctor's note to purchase 23andMe's genetic testing kit. \u003ccite>(23andMe)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The FDA targeted 23andMe for its direct to consumer approach. But the company has not bowed to pressure from its critics. 23andMe's CEO Anne Wojciki \u003ca href=\"http://ww2.kqed.org/futureofyou/2015/04/10/23andme-ceo-we-are-now-the-poster-child-for-patient-empowerment/\">told me recently\u003c/a> that she is committed to sharing health data directly with consumers, even if it means years of paperwork: \"I’ve said many times that consumers with no background in medicine can understand complicated ideas.\"\u003c/p>\n\u003cp>But some health experts harbor mixed feelings about whether this is the safest approach.\u003c/p>\n\u003cp>Bob Wachter, interim chair of the department of medicine at UCSF, said he was glad the FDA stepped in when it did. But he does believe that 23andMe's approach is the future, especially if they can find a way to work with regulators.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"The pressure over time will be that more health information is available directly to the consumer\" he said. \"But this needs to be tapped periodically to make sure it doesn't get ahead of itself.\"\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/55240/its-back-23andme-relaunches-its-consumer-gene-test","authors":["3252"],"categories":["futureofyou_1060","futureofyou_1064"],"tags":["futureofyou_15","futureofyou_270","futureofyou_80"],"featImg":"futureofyou_55245","label":"futureofyou"},"futureofyou_1722":{"type":"posts","id":"futureofyou_1722","meta":{"index":"posts_1591205157","site":"futureofyou","id":"1722","score":null,"sort":[1429131211000]},"guestAuthors":[],"slug":"meet-the-man-leading-californias-3m-precision-medicine-initiative","title":"Meet the Man Leading California's $3M 'Precision Medicine' Initiative","publishDate":1429131211,"format":"standard","headTitle":"Q&A | Future of You | KQED Future of You | KQED Science","labelTerm":{"term":54,"site":"futureofyou"},"content":"\u003cp>\"Precision medicine\" may seem like a vague and futuristic term. But for President Obama and other policymakers, it represents the future of cancer treatment and care.\u003c/p>\n\u003cp>For decades, doctors would prescribe treatments that work for some or most people -- a \"one sized fits all\" approach. But precision medicine proposes that care providers treat patients on an individual basis.\u003c/p>\n\u003cp>This week, the state of California stepped up its efforts to deliver more targeted health care by setting aside $3 million for precision medicine.\u003c/p>\n\u003cp>The program relies on support from patients, caregivers and researchers, including doctors and nurses. Many health experts are already on board, as precision medicine could dramatically improve how we treat serious diseases, like cancer and diabetes.\u003c/p>\n\u003cfigure id=\"attachment_1760\" class=\"wp-caption alignright\" style=\"max-width: 370px\">\u003cimg class=\"size-full wp-image-1760\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/04/Precision-Medicine-Timeline2.jpg\" alt=\"A timeline of precision medicine milestones\" width=\"370\" height=\"1190\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/04/Precision-Medicine-Timeline2.jpg 370w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/Precision-Medicine-Timeline2-187x600.jpg 187w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/Precision-Medicine-Timeline2-367x1180.jpg 367w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/Precision-Medicine-Timeline2-320x1029.jpg 320w\" sizes=\"(max-width: 370px) 100vw, 370px\">\u003cfigcaption class=\"wp-caption-text\">A timeline of precision medicine milestones \u003ccite>(UCSF)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Atul Butte, a physician and computational health buff, has stepped up to lead California's $3 million initiative. \u003cem>KQED's Future of You\u003c/em> discussed with Butte the goals for the program,called the \"California Initiative To Advance Precision Medicine,\" a few of the challenges, and the real benefits for people. This interview has been edited and condensed for brevity.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cstrong>Do patients understand this \"Precision Medicine\" idea? How will you communicate this initiative to the general public?\u003c/strong>\u003c/p>\n\u003cp>Honestly, I don't think most people do. We are still trying to define the phrase, and figure out how best to describe it to the public. President Obama mentioned it earlier this year in a speech, and positioned it as a way for the country to try to solve cancer. I use phrases like \"imagine a Google Maps for health\" or \"a new molecular approach to thinking about disease\" -- and I tell people that now we're in a position to really do something.\u003c/p>\n\u003cp>\u003cstrong>The analogy of \"Google Maps for health\" is catchy. Did you come up with it? And what does it mean?\u003c/strong>\u003c/p>\n\u003cp>I actually borrowed the term from a \u003ca href=\"http://www.ucsf.edu/sites/default/files/legacy_files/documents/new-taxonomy.pdf\">\u003cspan class=\"s2\">2011 report from the Institute of Medicine\u003c/span>\u003c/a>. Susan Desmond-Hellman and \u003ca href=\"http://yamamotolab.ucsf.edu/\">\u003cspan class=\"s2\">Keith Yamamoto\u003c/span>\u003c/a> and others from UCSF were part of a committee to decide what the future of medical research would be. The committee collected health data in all sorts of layers, including a layer for cost of care, for genomics, or for medications. But we are not connecting the dots between these layers. The analogy the committee used is with Google Maps, which pulls together in its visualization traffic data, restaurant ratings, building data and more. You need that kind of data integration for Life Sciences and medicine also.\u003c/p>\n\u003cp>\u003cb>KQED \u003c/b>\u003ca href=\"http://ww2.kqed.org/futureofyou/2015/03/20/ucsf-white-house-search-for-better-treatments-for-disease/\">\u003cspan class=\"s2\">\u003cb>recently visited your new digs at the UCSF Mission Bay\u003c/b>\u003c/span>\u003c/a>\u003cb> to meet with U.S. Department of Health and Human Services Secretary Sylvia Burwell and discuss the government's plans for Precision Medicine. What new details have emerged since then?\u003c/b>\u003c/p>\n\u003caside class=\"pullquote alignright\">“We're not looking at tiny bits of human DNA anymore, but the whole genome.\"\u003c/aside>\n\u003cp>Well, our plans date back to well before your visit in March. Governor Brown mentioned 'Precision Medicine' in the 2014 State of the Union Address. A pot of money -- $3 million -- was put into the state budget. We've been thinking since then about how to leverage that money.\u003c/p>\n\u003cp>We now know that we're planning to use it in two ways. We will start by collecting data that is necessary for us to provide Precision Medicine. We will determine questions like: Who has the assets? Is it groups of patients or genomics companies?\u003c/p>\n\u003cp>The bulk of the money, however, will go to two research pilots. These pilots will be run at multiple sites across the UC Health System.\u003c/p>\n\u003cp>\u003cstrong>How will you pick the two pilots? Will you setup a committee to evaluate all the proposals? And which diseases are you focusing on first?\u003c/strong>\u003c/p>\n\u003cp>We envision that all ten of the UC campuses will put in proposals. We may also get entries from Stanford and other California medical schools, as well as private biotech companies. We'll put together a committee in the next few weeks to decide on the two that will receive funding.\u003c/p>\n\u003cp>We're hoping that different campuses will work together and exchange relevant data. For instance, if two of the UC schools are exceptionally great at taking care of patients with breast cancer, they could pool data to develop specific drug therapies.\u003c/p>\n\u003cp>Cancer is an obvious target for Precision Medicine, and a lot of people are talking about that. We could also help kids with rare diseases.\u003c/p>\n\u003cp>\u003cstrong>How will you deal with some of the challenges of sharing data across different medical institutions? As recent articles \u003ca href=\"http://ww2.kqed.org/futureofyou/broken-medical-records\">(including a two-part series from KQED) \u003c/a>have demonstrated, much of this data isn't stored in a format that computers can ingest. And as you gather this sensitive data, how will you protect it?\u003c/strong>\u003c/p>\n\u003cp>A lot of this data is structured, which makes it easier for a computer to sort. But some of it, like imaging studies and text-based medical reports, are very difficult to process. There are some tools we can use, but we envision that many more tools will be developed in the next few years, whether it's from academia or private companies.\u003c/p>\n\u003cp>Another thing to highlight is that we want to make sure patients are involved in the process. We will make sure the data is anonymized and de-identified. We don't need to know who these patients are. We'll also be adding ethics and privacy advocates on the committee.\u003c/p>\n\u003cp>\u003cstrong>$3 million is a drop in the bucket when it comes to health care. Are you disappointed that there aren't more funds for the initiative?\u003c/strong>\u003c/p>\n\u003cp>Frankly, I am thrilled there is any money at all. Money for science from state budgets is hard to come by! But there may be more money in the future, potentially from private investors.\u003c/p>\n\u003cp>\u003cstrong>Speaking of patients, how will people benefit from this initiative in real and tangible ways? The initiative seems quite vague in its scope.\u003c/strong>\u003c/p>\n\u003cp>Let's be clear: This is a modest sum of money that will be spent on short-term trials. Some patients might enroll in these studies, particularly as existing studies expand to more UC centers. Those who participate at the early stages can learn about genetics. But the experience will not change for the average Californian.\u003c/p>\n\u003cp>\u003cstrong>How did you get involved in this field of \"computational health sciences\"? Will there be a hot market for jobs like this, which combine computer science and medicine skill-sets?\u003c/strong>\u003c/p>\n\u003cp>I started my career as a computer scientist, and used to work as a contractor for big companies like Apple. I later attended medical school and trained as a pediatrician. My advisors convinced me to go to \u003ca href=\"http://web.mit.edu/\">The Massachusetts Institute of Technology (MIT) to earn a PhD. \u003c/a>After graduating, I set up a lab to figure out how to better use medical data.\u003c/p>\n\u003cp>I just moved over to UCSF from Stanford at the beginning of April to build out the Institute for Computational Health Science. We'll be recruiting heavily.\u003c/p>\n\u003cp>The field of bioinformatics has been important for some time, but the significance is new. We're not looking at tiny bits of human DNA anymore, but the whole genome. The scope is much bigger. Bioinformatics is absolutely the career of the future.\u003c/p>\n\u003cp>\u003cstrong>What brought you to UCSF after over a decade at Stanford?\u003c/strong>\u003c/p>\n\u003caside class=\"pullquote alignleft\">\"Bioinformatics is absolutely the career of the future.\"\u003c/aside>\n\u003cp>I loved Stanford, but UCSF offered two things I couldn't get there. It's a major medical center with large patient populations and resources that are required to build out a whole program in computational health. We're going to build a new building -- you need a large set of resources for that. Also, I have this physician link across all the UC health campuses. That's 13 million patients! We can really learn a lot from them, while we work to improve the consistency of care across the UC system.\u003c/p>\n\u003cp>\u003cstrong>Do you have any plans for new research that would reduce inefficiencies and help keep health care costs under control? And how about pricing, which can wildly differ between California hospitals?\u003c/strong>\u003c/p>\n\u003cp>Yes, there are a lot of inefficiencies in our health care system. I think data might shed light on where we can improve. I am hopeful we can reduce health care costs. How can we remove the piece that isn't needed?\u003c/p>\n\u003cp>Pricing depends on a complicated system of players, including payers. If I can even partially solve the cost problem, I'll see that as a success. Pricing is a different story.\u003c/p>\n\u003cp>\u003cstrong>How will the private sector get involved with this initiative? And are you looking at involving digital health tools from Silicon Valley's startups?\u003c/strong>\u003c/p>\n\u003cp>Yes, we expect that private industry will want to get involved. I have been getting tons of emails already from companies.\u003c/p>\n\u003cp>We envision that these pilots will draw on resources from the tech world, like Apple's ResearchKit, which offers an interesting way to recruit patients. We would also encourage research teams to use new tools and partner with companies like Apple or Samsung to get more outcomes data on their patients. What are patients like at home? How healthy are their habits? We need more real-world data.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>I am definitely optimistic about the role of technology in health care. Computers and digitization really has helped. We just need to make sure people aren't being left behind as we move into this digital age, and that everyone makes these transition away from paper-based systems in a safe and effective way.\u003c/p>\n\n","blocks":[],"excerpt":"The state of California just launched a $3 million \"Precision Medicine\" initiative. The project's leader, Dr. Atul Butte, opens up to KQED about some of the key challenges, including efforts to safeguard patient privacy. ","status":"publish","parent":0,"modified":1429133385,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":39,"wordCount":1637},"headData":{"title":"Meet the Man Leading California's $3M 'Precision Medicine' Initiative | KQED","description":"The state of California just launched a $3 million "Precision Medicine" initiative. The project's leader, Dr. Atul Butte, opens up to KQED about some of the key challenges, including efforts to safeguard patient privacy. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Meet the Man Leading California's $3M 'Precision Medicine' Initiative","datePublished":"2015-04-15T20:53:31.000Z","dateModified":"2015-04-15T21:29:45.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"1722 http://ww2.kqed.org/futureofyou/?p=1722","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/04/15/meet-the-man-leading-californias-3m-precision-medicine-initiative/","disqusTitle":"Meet the Man Leading California's $3M 'Precision Medicine' Initiative","path":"/futureofyou/1722/meet-the-man-leading-californias-3m-precision-medicine-initiative","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>\"Precision medicine\" may seem like a vague and futuristic term. But for President Obama and other policymakers, it represents the future of cancer treatment and care.\u003c/p>\n\u003cp>For decades, doctors would prescribe treatments that work for some or most people -- a \"one sized fits all\" approach. But precision medicine proposes that care providers treat patients on an individual basis.\u003c/p>\n\u003cp>This week, the state of California stepped up its efforts to deliver more targeted health care by setting aside $3 million for precision medicine.\u003c/p>\n\u003cp>The program relies on support from patients, caregivers and researchers, including doctors and nurses. Many health experts are already on board, as precision medicine could dramatically improve how we treat serious diseases, like cancer and diabetes.\u003c/p>\n\u003cfigure id=\"attachment_1760\" class=\"wp-caption alignright\" style=\"max-width: 370px\">\u003cimg class=\"size-full wp-image-1760\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/04/Precision-Medicine-Timeline2.jpg\" alt=\"A timeline of precision medicine milestones\" width=\"370\" height=\"1190\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/04/Precision-Medicine-Timeline2.jpg 370w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/Precision-Medicine-Timeline2-187x600.jpg 187w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/Precision-Medicine-Timeline2-367x1180.jpg 367w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/Precision-Medicine-Timeline2-320x1029.jpg 320w\" sizes=\"(max-width: 370px) 100vw, 370px\">\u003cfigcaption class=\"wp-caption-text\">A timeline of precision medicine milestones \u003ccite>(UCSF)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Atul Butte, a physician and computational health buff, has stepped up to lead California's $3 million initiative. \u003cem>KQED's Future of You\u003c/em> discussed with Butte the goals for the program,called the \"California Initiative To Advance Precision Medicine,\" a few of the challenges, and the real benefits for people. This interview has been edited and condensed for brevity.\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>\u003cstrong>Do patients understand this \"Precision Medicine\" idea? How will you communicate this initiative to the general public?\u003c/strong>\u003c/p>\n\u003cp>Honestly, I don't think most people do. We are still trying to define the phrase, and figure out how best to describe it to the public. President Obama mentioned it earlier this year in a speech, and positioned it as a way for the country to try to solve cancer. I use phrases like \"imagine a Google Maps for health\" or \"a new molecular approach to thinking about disease\" -- and I tell people that now we're in a position to really do something.\u003c/p>\n\u003cp>\u003cstrong>The analogy of \"Google Maps for health\" is catchy. Did you come up with it? And what does it mean?\u003c/strong>\u003c/p>\n\u003cp>I actually borrowed the term from a \u003ca href=\"http://www.ucsf.edu/sites/default/files/legacy_files/documents/new-taxonomy.pdf\">\u003cspan class=\"s2\">2011 report from the Institute of Medicine\u003c/span>\u003c/a>. Susan Desmond-Hellman and \u003ca href=\"http://yamamotolab.ucsf.edu/\">\u003cspan class=\"s2\">Keith Yamamoto\u003c/span>\u003c/a> and others from UCSF were part of a committee to decide what the future of medical research would be. The committee collected health data in all sorts of layers, including a layer for cost of care, for genomics, or for medications. But we are not connecting the dots between these layers. The analogy the committee used is with Google Maps, which pulls together in its visualization traffic data, restaurant ratings, building data and more. You need that kind of data integration for Life Sciences and medicine also.\u003c/p>\n\u003cp>\u003cb>KQED \u003c/b>\u003ca href=\"http://ww2.kqed.org/futureofyou/2015/03/20/ucsf-white-house-search-for-better-treatments-for-disease/\">\u003cspan class=\"s2\">\u003cb>recently visited your new digs at the UCSF Mission Bay\u003c/b>\u003c/span>\u003c/a>\u003cb> to meet with U.S. Department of Health and Human Services Secretary Sylvia Burwell and discuss the government's plans for Precision Medicine. What new details have emerged since then?\u003c/b>\u003c/p>\n\u003caside class=\"pullquote alignright\">“We're not looking at tiny bits of human DNA anymore, but the whole genome.\"\u003c/aside>\n\u003cp>Well, our plans date back to well before your visit in March. Governor Brown mentioned 'Precision Medicine' in the 2014 State of the Union Address. A pot of money -- $3 million -- was put into the state budget. We've been thinking since then about how to leverage that money.\u003c/p>\n\u003cp>We now know that we're planning to use it in two ways. We will start by collecting data that is necessary for us to provide Precision Medicine. We will determine questions like: Who has the assets? Is it groups of patients or genomics companies?\u003c/p>\n\u003cp>The bulk of the money, however, will go to two research pilots. These pilots will be run at multiple sites across the UC Health System.\u003c/p>\n\u003cp>\u003cstrong>How will you pick the two pilots? Will you setup a committee to evaluate all the proposals? And which diseases are you focusing on first?\u003c/strong>\u003c/p>\n\u003cp>We envision that all ten of the UC campuses will put in proposals. We may also get entries from Stanford and other California medical schools, as well as private biotech companies. We'll put together a committee in the next few weeks to decide on the two that will receive funding.\u003c/p>\n\u003cp>We're hoping that different campuses will work together and exchange relevant data. For instance, if two of the UC schools are exceptionally great at taking care of patients with breast cancer, they could pool data to develop specific drug therapies.\u003c/p>\n\u003cp>Cancer is an obvious target for Precision Medicine, and a lot of people are talking about that. We could also help kids with rare diseases.\u003c/p>\n\u003cp>\u003cstrong>How will you deal with some of the challenges of sharing data across different medical institutions? As recent articles \u003ca href=\"http://ww2.kqed.org/futureofyou/broken-medical-records\">(including a two-part series from KQED) \u003c/a>have demonstrated, much of this data isn't stored in a format that computers can ingest. And as you gather this sensitive data, how will you protect it?\u003c/strong>\u003c/p>\n\u003cp>A lot of this data is structured, which makes it easier for a computer to sort. But some of it, like imaging studies and text-based medical reports, are very difficult to process. There are some tools we can use, but we envision that many more tools will be developed in the next few years, whether it's from academia or private companies.\u003c/p>\n\u003cp>Another thing to highlight is that we want to make sure patients are involved in the process. We will make sure the data is anonymized and de-identified. We don't need to know who these patients are. We'll also be adding ethics and privacy advocates on the committee.\u003c/p>\n\u003cp>\u003cstrong>$3 million is a drop in the bucket when it comes to health care. Are you disappointed that there aren't more funds for the initiative?\u003c/strong>\u003c/p>\n\u003cp>Frankly, I am thrilled there is any money at all. Money for science from state budgets is hard to come by! But there may be more money in the future, potentially from private investors.\u003c/p>\n\u003cp>\u003cstrong>Speaking of patients, how will people benefit from this initiative in real and tangible ways? The initiative seems quite vague in its scope.\u003c/strong>\u003c/p>\n\u003cp>Let's be clear: This is a modest sum of money that will be spent on short-term trials. Some patients might enroll in these studies, particularly as existing studies expand to more UC centers. Those who participate at the early stages can learn about genetics. But the experience will not change for the average Californian.\u003c/p>\n\u003cp>\u003cstrong>How did you get involved in this field of \"computational health sciences\"? Will there be a hot market for jobs like this, which combine computer science and medicine skill-sets?\u003c/strong>\u003c/p>\n\u003cp>I started my career as a computer scientist, and used to work as a contractor for big companies like Apple. I later attended medical school and trained as a pediatrician. My advisors convinced me to go to \u003ca href=\"http://web.mit.edu/\">The Massachusetts Institute of Technology (MIT) to earn a PhD. \u003c/a>After graduating, I set up a lab to figure out how to better use medical data.\u003c/p>\n\u003cp>I just moved over to UCSF from Stanford at the beginning of April to build out the Institute for Computational Health Science. We'll be recruiting heavily.\u003c/p>\n\u003cp>The field of bioinformatics has been important for some time, but the significance is new. We're not looking at tiny bits of human DNA anymore, but the whole genome. The scope is much bigger. Bioinformatics is absolutely the career of the future.\u003c/p>\n\u003cp>\u003cstrong>What brought you to UCSF after over a decade at Stanford?\u003c/strong>\u003c/p>\n\u003caside class=\"pullquote alignleft\">\"Bioinformatics is absolutely the career of the future.\"\u003c/aside>\n\u003cp>I loved Stanford, but UCSF offered two things I couldn't get there. It's a major medical center with large patient populations and resources that are required to build out a whole program in computational health. We're going to build a new building -- you need a large set of resources for that. Also, I have this physician link across all the UC health campuses. That's 13 million patients! We can really learn a lot from them, while we work to improve the consistency of care across the UC system.\u003c/p>\n\u003cp>\u003cstrong>Do you have any plans for new research that would reduce inefficiencies and help keep health care costs under control? And how about pricing, which can wildly differ between California hospitals?\u003c/strong>\u003c/p>\n\u003cp>Yes, there are a lot of inefficiencies in our health care system. I think data might shed light on where we can improve. I am hopeful we can reduce health care costs. How can we remove the piece that isn't needed?\u003c/p>\n\u003cp>Pricing depends on a complicated system of players, including payers. If I can even partially solve the cost problem, I'll see that as a success. Pricing is a different story.\u003c/p>\n\u003cp>\u003cstrong>How will the private sector get involved with this initiative? And are you looking at involving digital health tools from Silicon Valley's startups?\u003c/strong>\u003c/p>\n\u003cp>Yes, we expect that private industry will want to get involved. I have been getting tons of emails already from companies.\u003c/p>\n\u003cp>We envision that these pilots will draw on resources from the tech world, like Apple's ResearchKit, which offers an interesting way to recruit patients. We would also encourage research teams to use new tools and partner with companies like Apple or Samsung to get more outcomes data on their patients. What are patients like at home? How healthy are their habits? We need more real-world data.\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>I am definitely optimistic about the role of technology in health care. Computers and digitization really has helped. We just need to make sure people aren't being left behind as we move into this digital age, and that everyone makes these transition away from paper-based systems in a safe and effective way.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/1722/meet-the-man-leading-californias-3m-precision-medicine-initiative","authors":["3252"],"programs":["futureofyou_54"],"series":["futureofyou_135"],"categories":["futureofyou_1","futureofyou_73"],"tags":["futureofyou_15","futureofyou_194","futureofyou_29","futureofyou_200","futureofyou_103","futureofyou_141","futureofyou_190","futureofyou_34","futureofyou_138","futureofyou_197","futureofyou_196","futureofyou_171","futureofyou_80","futureofyou_112","futureofyou_170","futureofyou_198","futureofyou_113"],"featImg":"futureofyou_1750","label":"futureofyou_54"},"futureofyou_1394":{"type":"posts","id":"futureofyou_1394","meta":{"index":"posts_1591205157","site":"futureofyou","id":"1394","score":null,"sort":[1428681366000]},"guestAuthors":[],"slug":"23andme-ceo-we-are-now-the-poster-child-for-patient-empowerment","title":"23andMe CEO: We Are Now the 'Poster Child' for Patient Empowerment","publishDate":1428681366,"format":"standard","headTitle":"Q&A | KQED Future of You | KQED Science","labelTerm":{"term":135,"site":"futureofyou"},"content":"\u003cp>\u003cstrong>Update, 12:00 p.m. Oct 21: \u003c/strong>\u003ca href=\"http://ww2.kqed.org/futureofyou/2015/10/21/its-back-23andme-relaunches-its-consumer-gene-test/\">23andMe relaunched\u003c/a> its gene test with dozens of health reports, making it the first direct to consumer DNA test to gain approval from FDA.\u003c/p>\n\u003cp>\u003cstrong>Original story:\u003c/strong>\u003c/p>\n\u003cp>Many media pundits wrote off a genetic-testing start-up called \u003ca href=\"http://23andme.com\">23andMe\u003c/a> in November of 2013, when federal regulators ordered an immediate halt to sales of its flagship product.\u003c/p>\n\u003cp>In exchange for a swab of spit, Google-funded 23andMe provided people with direct access to over 200 health reports, detailing their risk of getting or carrying the gene mutation for a disease such as breast cancer or Parkinson's disease. But regulators\u003ca href=\"http://www.fda.gov/iceci/enforcementactions/warningletters/2013/ucm376296.htm\"> feared that people would misinterpret this health data\u003c/a>, which had not been clinically validated, or take action based on a \"false positive\" result.\u003c/p>\n\u003cp>Obstacles aside, the company has continued to \u003ca href=\"http://www.foxbusiness.com/markets/2015/03/12/dna-testing-firm-23andme-hires-biotechnology-executive-in-bid-to-develop-its/\">grow its team with some high-profile\u003c/a> hires, ink partnerships with big\u003ca href=\"https://www.genomeweb.com/genetic-research/23andme-pfizer-partner-genetic-research-target-lupus\"> pharmaceutical companies like Pfizer\u003c/a> and expand its customer base to more than 850,000 people. All this, while it continues to work with the U.S. Food and Drug Administration (FDA) to bring its DNA test back to market.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The secret to the company's success? Its unstoppable chief executive, Anne Wojcicki, who has stayed true to the company's core mission: To improve access to the human genome.\u003c/p>\n\u003cp>I spoke with Wojcicki shortly after a meeting with her ever-expanding staff, and a week before a rare vacation to a remote corner of the world with her sister, Susan Wojcicki, another Silicon Valley power player who works as the CEO of \u003ca href=\"http://youtube.com\">YouTube\u003c/a>. Our interview has been condensed and edited for brevity.\u003c/p>\n\u003cp>\u003cstrong>23andMe has certainly had its critics over the years, as it's ambitious in scope. What prompted you to start the company in the first place?\u003c/strong>\u003c/p>\n\u003cp>As a young analyst on Wall Street, I invested in health care companies. I loved it, but I felt conflicted. I would go to parties filled with people in health care, and it was all about making money and having fun. I was also volunteering at hospitals in my spare time. I noticed this disconnect between the world that was making money on health care and those who are using it.\u003c/p>\n\u003cp>I still cringe at the U.S. health care system that is focused on optimizing revenues, versus improving access to care. I wanted to democratize access and I also knew that very little money was spent on prevention. 23andMe is focused on showing people their health risks. If I can do that, I think I'm doing a great service.\u003c/p>\n\u003cp>\u003cstrong>What are some of the most eye-opening discoveries you've made by using your own service?\u003c/strong>\u003c/p>\n\u003cp>I remember the first time my family took the test, because we found out that Sergey [Brin, cofounder of Google and Wojcicki's husband] was a carrier for the LRRK2 gene, making him a carrier for Parkinson's Disease. That was monumental. We also found out that I have a higher risk for breast cancer and I'm a carrier of an inherited disease called \u003ca href=\"http://ghr.nlm.nih.gov/condition/bloom-syndrome\">Bloom's Syndrome\u003c/a>. I am now more proactive about my diet.\u003c/p>\n\u003caside class=\"pullquote alignleft\">\"I still cringe at the U.S. health care system that is focused on optimizing revenues, versus improving access to care.\"\u003cbr>\n\u003ccite>Anne Wojcicki, 23andMe CEO\u003c/cite>\u003c/aside>\n\u003cp>Another cool thing is the first time you see that your children are actually our children. Obviously I know they're mine as I saw them being born. But when you can see it in a digital form, it's pretty awesome. It's one of those moments where you feel like you're part of this legacy.\u003c/p>\n\u003cp>[Editors' Note: Wojcicki is still legally married to Google cofounder Sergey Brin, but the pair are separated. Google invested \u003cspan class=\"st\">$3.9 million in 23andMe in 2007.\u003c/span>]\u003c/p>\n\u003cp>\u003cstrong>Were you surprised by the FDA's warning letter? Or did you expect to overcome some major hurdles with this company?\u003c/strong>\u003c/p>\n\u003cp>When I worked on Wall Street, we knew that stocks would go up and go down. Likewise, we have always anticipated that there would be ups and downs with an ambitious company like this, which is focused on helping people understand, access and benefit from the human genome. The FDA letter was obviously a big bump in the road for us, but our board and our investors understood from the beginning that it wasn't going to be easy.\u003c/p>\n\u003cp>\u003cstrong>You recently experienced a small victory, with the FDA approving your test for a rare genetic disease called Bloom Syndrome. How did you feel when you heard the news?\u003c/strong>\u003c/p>\n\u003cp>It was one of the first times in the company that we had a standing ovation. We felt a ton of pride. On a personal level, this has been a big lesson. There is a level of steps and patience that is required. I'm trying not to inhale the health revolution all at once.\u003c/p>\n\u003cp>I also felt fortunate to have Kathy Hibbs [\u003ca href=\"https://www.linkedin.com/pub/kathy-hibbs/40/679/a0a\">23andMe's chief legal and regulatory officer\u003c/a>] on board. We understood even back in 2010 that we would be regulated as a medical device. But there was a lot of miscommunication on our behalf. With Kathy, we have someone who has paved the way towards getting the product to market.\u003c/p>\n\u003cp>\u003cstrong>What's next in the pipeline for approval after Bloom Syndrome?\u003c/strong>\u003c/p>\n\u003cp>I'm playing the role of the obedient CEO and deferring to Kathy [Hibbs] on this. With the Bloom Syndrome approval, the FDA \u003ca href=\"http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm435003.htm\">down-classified \u003cspan class=\"st\">autosomal recessive disorder\u003c/span>s.\u003c/a> We're pretty excited about that. \u003ca href=\"http://www.nigms.nih.gov/Research/SpecificAreas/PGRN/Background/Pages/pgrn_faq.aspx\">We are also looking at pharmacogenetics [how individuals respond to drugs]\u003c/a>; the BRCA gene test for breast cancer and disease risks, including Alzheimer's Disease.\u003c/p>\n\u003cp>\u003cstrong>A recent Washington Post article \u003ca href=\"http://www.washingtonpost.com/national/health-science/23andme-co-founder-anne-wojcickis-washington-charm-offensive/2014/06/27/b465b086-f240-11e3-9ebc-2ee6f81ed217_story.html\">described you as being on the \"charm offensive\" in D.C.\u003c/a>, as you have been seen liaising with folks from the White House and other federal agencies. Why the shift in focus?\u003c/strong>\u003c/p>\n\u003cp>One of the benefits of the warning letter from the FDA is that it brought me to D.C. often for conversations with policymakers. We weren't in D.C. enough before.\u003c/p>\n\u003cp>23andMe is now seen in D.C. as a poster child for this \"consumer empowerment\" movement, as we've spoken out publicly on this topic. I've said many times that consumers with no background in medicine can understand complicated ideas. We're seeing this idea circulate on the Hill that it's the right time for the consumer to transition from subject to participant.\u003c/p>\n\u003cp>\u003cstrong>We've heard your name in association with the President's \"Precision Medicine\" initiative. How involved have you been?\u003c/strong>\u003c/p>\n\u003cp>We are not that involved, but I have been super impressed with the initiative so far. They called out the fact that there should be far more consumer engagement in health care. For example, why hasn't there been a single federally funded study where consumers get their genetic information? All this money is going into research, but participants aren't getting their data back.\u003c/p>\n\u003cp>I saw Eric Green [director of the \u003ca href=\"http://www.genome.gov/\">National Human Genome Research Institute\u003c/a>] last night. There is definitely a vision in the government to get a larger number of people engaged and leverage a lot of data. They have to put together a plan for the initiative soon. I feel lucky I'm not part of it. It's going to be a lot of work over the next three months.\u003c/p>\n\u003cp>\u003cstrong>You've been partnering up with big pharmaceutical vendors and other stakeholders. How can we be sure that you won't detract from the core mission, and end up like the money-guzzling entities you encountered on Wall Street? \u003c/strong>\u003c/p>\n\u003caside class=\"pullquote alignleft\">\"There's men, there's women and then there's assholes. I recommend trying to work with the men and the women.\"\u003cbr>\n\u003ccite>Anne Wojcicki, 23andMe CEO\u003c/cite>\u003c/aside>\n\u003cp>Pharma isn't all bad. It's a necessary component of the health care system. They are the ones who make the therapies. But I do want us to do things differently in making sure the consumer is part of the solution, and we also want to continue to do work on prevention. I'm also keeping an eye on different health care models in other parts of the world, which I feel morally better about.\u003c/p>\n\u003cp>\u003cstrong>\u003ca href=\"http://www.forbes.com/sites/matthewherper/2015/03/12/23andme-enters-the-drug-business-just-as-apple-changes-it/\">23andMe is getting into drug invention,\u003c/a> which seems very ambitious given the high costs of bringing a new pharmaceutical to market. How will you find the resources?\u003c/strong>\u003c/p>\n\u003cp>We're going to do it differently. I find it outright crazy that so few firms are researching who this drug will work for. We want to do the right thing even if it means cutting down our market size.\u003c/p>\n\u003cp>There are so many inefficiencies in drug development and we'll take a different approach in clinical trial recruitment. We have almost a million people and growing, and we'll recruit directly from our database. As for the money, it will be solvable if we get to that point. We'll raise the funds if we have good target ideas.\u003c/p>\n\u003cp>\u003cstrong>What's next for the future? How about sequencing the whole genome, given the \u003ca href=\"http://www.nature.com/news/technology-the-1-000-genome-1.14901\">recent claims that it can be done for $1000\u003c/a>?\u003c/strong>\u003c/p>\n\u003cp>We are definitely thinking about sequencing. It's high on our list of priorities and topics. We've always said we'll move into it when it finally gets to an even more consumer-friendly price point.\u003c/p>\n\u003cp>\u003cstrong>Finally, KQED's Future of You \u003ca href=\"http://ww2.kqed.org/futureofyou/2015/03/23/what-digital-health-lacks-female-ceos/\">published some findings\u003c/a> on the lack of gender diversity in health care. Any advice for would-be female founders?\u003c/strong>\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>There's men, there's women and then there's assholes. I recommend trying to work with the men and the women! On a more serious note though, there should be more women in the industry. Gender diversity leads to more innovation for the entire sector.\u003c/p>\n\n","blocks":[],"excerpt":"23andMe's secret weapon? Its mission-driven, straight-talking CEO Anne Wojcicki. She opens up with KQED about DNA, diversity and more.","status":"publish","parent":0,"modified":1477283137,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":38,"wordCount":1639},"headData":{"title":"23andMe CEO: We Are Now the 'Poster Child' for Patient Empowerment | KQED","description":"23andMe's secret weapon? Its mission-driven, straight-talking CEO Anne Wojcicki. She opens up with KQED about DNA, diversity and more.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"23andMe CEO: We Are Now the 'Poster Child' for Patient Empowerment","datePublished":"2015-04-10T15:56:06.000Z","dateModified":"2016-10-24T04:25:37.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"1394 http://ww2.kqed.org/futureofyou/?p=1394","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/04/10/23andme-ceo-we-are-now-the-poster-child-for-patient-empowerment/","disqusTitle":"23andMe CEO: We Are Now the 'Poster Child' for Patient Empowerment","path":"/futureofyou/1394/23andme-ceo-we-are-now-the-poster-child-for-patient-empowerment","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cstrong>Update, 12:00 p.m. Oct 21: \u003c/strong>\u003ca href=\"http://ww2.kqed.org/futureofyou/2015/10/21/its-back-23andme-relaunches-its-consumer-gene-test/\">23andMe relaunched\u003c/a> its gene test with dozens of health reports, making it the first direct to consumer DNA test to gain approval from FDA.\u003c/p>\n\u003cp>\u003cstrong>Original story:\u003c/strong>\u003c/p>\n\u003cp>Many media pundits wrote off a genetic-testing start-up called \u003ca href=\"http://23andme.com\">23andMe\u003c/a> in November of 2013, when federal regulators ordered an immediate halt to sales of its flagship product.\u003c/p>\n\u003cp>In exchange for a swab of spit, Google-funded 23andMe provided people with direct access to over 200 health reports, detailing their risk of getting or carrying the gene mutation for a disease such as breast cancer or Parkinson's disease. But regulators\u003ca href=\"http://www.fda.gov/iceci/enforcementactions/warningletters/2013/ucm376296.htm\"> feared that people would misinterpret this health data\u003c/a>, which had not been clinically validated, or take action based on a \"false positive\" result.\u003c/p>\n\u003cp>Obstacles aside, the company has continued to \u003ca href=\"http://www.foxbusiness.com/markets/2015/03/12/dna-testing-firm-23andme-hires-biotechnology-executive-in-bid-to-develop-its/\">grow its team with some high-profile\u003c/a> hires, ink partnerships with big\u003ca href=\"https://www.genomeweb.com/genetic-research/23andme-pfizer-partner-genetic-research-target-lupus\"> pharmaceutical companies like Pfizer\u003c/a> and expand its customer base to more than 850,000 people. All this, while it continues to work with the U.S. Food and Drug Administration (FDA) to bring its DNA test back to market.\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 secret to the company's success? Its unstoppable chief executive, Anne Wojcicki, who has stayed true to the company's core mission: To improve access to the human genome.\u003c/p>\n\u003cp>I spoke with Wojcicki shortly after a meeting with her ever-expanding staff, and a week before a rare vacation to a remote corner of the world with her sister, Susan Wojcicki, another Silicon Valley power player who works as the CEO of \u003ca href=\"http://youtube.com\">YouTube\u003c/a>. Our interview has been condensed and edited for brevity.\u003c/p>\n\u003cp>\u003cstrong>23andMe has certainly had its critics over the years, as it's ambitious in scope. What prompted you to start the company in the first place?\u003c/strong>\u003c/p>\n\u003cp>As a young analyst on Wall Street, I invested in health care companies. I loved it, but I felt conflicted. I would go to parties filled with people in health care, and it was all about making money and having fun. I was also volunteering at hospitals in my spare time. I noticed this disconnect between the world that was making money on health care and those who are using it.\u003c/p>\n\u003cp>I still cringe at the U.S. health care system that is focused on optimizing revenues, versus improving access to care. I wanted to democratize access and I also knew that very little money was spent on prevention. 23andMe is focused on showing people their health risks. If I can do that, I think I'm doing a great service.\u003c/p>\n\u003cp>\u003cstrong>What are some of the most eye-opening discoveries you've made by using your own service?\u003c/strong>\u003c/p>\n\u003cp>I remember the first time my family took the test, because we found out that Sergey [Brin, cofounder of Google and Wojcicki's husband] was a carrier for the LRRK2 gene, making him a carrier for Parkinson's Disease. That was monumental. We also found out that I have a higher risk for breast cancer and I'm a carrier of an inherited disease called \u003ca href=\"http://ghr.nlm.nih.gov/condition/bloom-syndrome\">Bloom's Syndrome\u003c/a>. I am now more proactive about my diet.\u003c/p>\n\u003caside class=\"pullquote alignleft\">\"I still cringe at the U.S. health care system that is focused on optimizing revenues, versus improving access to care.\"\u003cbr>\n\u003ccite>Anne Wojcicki, 23andMe CEO\u003c/cite>\u003c/aside>\n\u003cp>Another cool thing is the first time you see that your children are actually our children. Obviously I know they're mine as I saw them being born. But when you can see it in a digital form, it's pretty awesome. It's one of those moments where you feel like you're part of this legacy.\u003c/p>\n\u003cp>[Editors' Note: Wojcicki is still legally married to Google cofounder Sergey Brin, but the pair are separated. Google invested \u003cspan class=\"st\">$3.9 million in 23andMe in 2007.\u003c/span>]\u003c/p>\n\u003cp>\u003cstrong>Were you surprised by the FDA's warning letter? Or did you expect to overcome some major hurdles with this company?\u003c/strong>\u003c/p>\n\u003cp>When I worked on Wall Street, we knew that stocks would go up and go down. Likewise, we have always anticipated that there would be ups and downs with an ambitious company like this, which is focused on helping people understand, access and benefit from the human genome. The FDA letter was obviously a big bump in the road for us, but our board and our investors understood from the beginning that it wasn't going to be easy.\u003c/p>\n\u003cp>\u003cstrong>You recently experienced a small victory, with the FDA approving your test for a rare genetic disease called Bloom Syndrome. How did you feel when you heard the news?\u003c/strong>\u003c/p>\n\u003cp>It was one of the first times in the company that we had a standing ovation. We felt a ton of pride. On a personal level, this has been a big lesson. There is a level of steps and patience that is required. I'm trying not to inhale the health revolution all at once.\u003c/p>\n\u003cp>I also felt fortunate to have Kathy Hibbs [\u003ca href=\"https://www.linkedin.com/pub/kathy-hibbs/40/679/a0a\">23andMe's chief legal and regulatory officer\u003c/a>] on board. We understood even back in 2010 that we would be regulated as a medical device. But there was a lot of miscommunication on our behalf. With Kathy, we have someone who has paved the way towards getting the product to market.\u003c/p>\n\u003cp>\u003cstrong>What's next in the pipeline for approval after Bloom Syndrome?\u003c/strong>\u003c/p>\n\u003cp>I'm playing the role of the obedient CEO and deferring to Kathy [Hibbs] on this. With the Bloom Syndrome approval, the FDA \u003ca href=\"http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm435003.htm\">down-classified \u003cspan class=\"st\">autosomal recessive disorder\u003c/span>s.\u003c/a> We're pretty excited about that. \u003ca href=\"http://www.nigms.nih.gov/Research/SpecificAreas/PGRN/Background/Pages/pgrn_faq.aspx\">We are also looking at pharmacogenetics [how individuals respond to drugs]\u003c/a>; the BRCA gene test for breast cancer and disease risks, including Alzheimer's Disease.\u003c/p>\n\u003cp>\u003cstrong>A recent Washington Post article \u003ca href=\"http://www.washingtonpost.com/national/health-science/23andme-co-founder-anne-wojcickis-washington-charm-offensive/2014/06/27/b465b086-f240-11e3-9ebc-2ee6f81ed217_story.html\">described you as being on the \"charm offensive\" in D.C.\u003c/a>, as you have been seen liaising with folks from the White House and other federal agencies. Why the shift in focus?\u003c/strong>\u003c/p>\n\u003cp>One of the benefits of the warning letter from the FDA is that it brought me to D.C. often for conversations with policymakers. We weren't in D.C. enough before.\u003c/p>\n\u003cp>23andMe is now seen in D.C. as a poster child for this \"consumer empowerment\" movement, as we've spoken out publicly on this topic. I've said many times that consumers with no background in medicine can understand complicated ideas. We're seeing this idea circulate on the Hill that it's the right time for the consumer to transition from subject to participant.\u003c/p>\n\u003cp>\u003cstrong>We've heard your name in association with the President's \"Precision Medicine\" initiative. How involved have you been?\u003c/strong>\u003c/p>\n\u003cp>We are not that involved, but I have been super impressed with the initiative so far. They called out the fact that there should be far more consumer engagement in health care. For example, why hasn't there been a single federally funded study where consumers get their genetic information? All this money is going into research, but participants aren't getting their data back.\u003c/p>\n\u003cp>I saw Eric Green [director of the \u003ca href=\"http://www.genome.gov/\">National Human Genome Research Institute\u003c/a>] last night. There is definitely a vision in the government to get a larger number of people engaged and leverage a lot of data. They have to put together a plan for the initiative soon. I feel lucky I'm not part of it. It's going to be a lot of work over the next three months.\u003c/p>\n\u003cp>\u003cstrong>You've been partnering up with big pharmaceutical vendors and other stakeholders. How can we be sure that you won't detract from the core mission, and end up like the money-guzzling entities you encountered on Wall Street? \u003c/strong>\u003c/p>\n\u003caside class=\"pullquote alignleft\">\"There's men, there's women and then there's assholes. I recommend trying to work with the men and the women.\"\u003cbr>\n\u003ccite>Anne Wojcicki, 23andMe CEO\u003c/cite>\u003c/aside>\n\u003cp>Pharma isn't all bad. It's a necessary component of the health care system. They are the ones who make the therapies. But I do want us to do things differently in making sure the consumer is part of the solution, and we also want to continue to do work on prevention. I'm also keeping an eye on different health care models in other parts of the world, which I feel morally better about.\u003c/p>\n\u003cp>\u003cstrong>\u003ca href=\"http://www.forbes.com/sites/matthewherper/2015/03/12/23andme-enters-the-drug-business-just-as-apple-changes-it/\">23andMe is getting into drug invention,\u003c/a> which seems very ambitious given the high costs of bringing a new pharmaceutical to market. How will you find the resources?\u003c/strong>\u003c/p>\n\u003cp>We're going to do it differently. I find it outright crazy that so few firms are researching who this drug will work for. We want to do the right thing even if it means cutting down our market size.\u003c/p>\n\u003cp>There are so many inefficiencies in drug development and we'll take a different approach in clinical trial recruitment. We have almost a million people and growing, and we'll recruit directly from our database. As for the money, it will be solvable if we get to that point. We'll raise the funds if we have good target ideas.\u003c/p>\n\u003cp>\u003cstrong>What's next for the future? How about sequencing the whole genome, given the \u003ca href=\"http://www.nature.com/news/technology-the-1-000-genome-1.14901\">recent claims that it can be done for $1000\u003c/a>?\u003c/strong>\u003c/p>\n\u003cp>We are definitely thinking about sequencing. It's high on our list of priorities and topics. We've always said we'll move into it when it finally gets to an even more consumer-friendly price point.\u003c/p>\n\u003cp>\u003cstrong>Finally, KQED's Future of You \u003ca href=\"http://ww2.kqed.org/futureofyou/2015/03/23/what-digital-health-lacks-female-ceos/\">published some findings\u003c/a> on the lack of gender diversity in health care. Any advice for would-be female founders?\u003c/strong>\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>There's men, there's women and then there's assholes. I recommend trying to work with the men and the women! On a more serious note though, there should be more women in the industry. Gender diversity leads to more innovation for the entire sector.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/1394/23andme-ceo-we-are-now-the-poster-child-for-patient-empowerment","authors":["3252"],"series":["futureofyou_135"],"categories":["futureofyou_1060","futureofyou_1064"],"tags":["futureofyou_15","futureofyou_36","futureofyou_17","futureofyou_138","futureofyou_120","futureofyou_61","futureofyou_171","futureofyou_80","futureofyou_170"],"featImg":"futureofyou_1396","label":"futureofyou_135"}},"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? 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You ask the questions. You decide what Bay Curious investigates. 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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. Because everyone needs a little help being human.\u003cbr />\u003cbr />\u003ca href=\"https://www.npr.org/podcasts/510312/codeswitch\">\u003cem>Code Switch\u003c/em> offical site and podcast\u003c/a>\u003cbr />\u003ca href=\"https://www.npr.org/lifekit\">\u003cem>Life Kit\u003c/em> offical site and podcast\u003c/a>\u003cbr />","airtime":"SUN 9pm-10pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Code-Switch-Life-Kit-Podcast-Tile-360x360-1.jpg","meta":{"site":"radio","source":"npr"},"link":"/radio/program/code-switch-life-kit","subscribe":{"apple":"https://podcasts.apple.com/podcast/1112190608?mt=2&at=11l79Y&ct=nprdirectory","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93d3cubnByLm9yZy9yc3MvcG9kY2FzdC5waHA_aWQ9NTEwMzEy","spotify":"https://open.spotify.com/show/3bExJ9JQpkwNhoHvaIIuyV","rss":"https://feeds.npr.org/510312/podcast.xml"}},"commonwealth-club":{"id":"commonwealth-club","title":"Commonwealth Club of California Podcast","info":"The Commonwealth Club of California is the nation's oldest and largest public affairs forum. As a non-partisan forum, The Club brings to the public airwaves diverse viewpoints on important topics. The Club's weekly radio broadcast - the oldest in the U.S., dating back to 1924 - is carried across the nation on public radio stations and is now podcasting. Our website archive features audio of our recent programs, as well as selected speeches from our long and distinguished history. This podcast feed is usually updated twice a week and is always un-edited.","airtime":"THU 10pm, FRI 1am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Commonwealth-Club-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.commonwealthclub.org/podcasts","meta":{"site":"news","source":"Commonwealth Club of California"},"link":"/radio/program/commonwealth-club","subscribe":{"apple":"https://itunes.apple.com/us/podcast/commonwealth-club-of-california-podcast/id976334034?mt=2","google":"https://podcasts.google.com/feed/aHR0cDovL3d3dy5jb21tb253ZWFsdGhjbHViLm9yZy9hdWRpby9wb2RjYXN0L3dlZWtseS54bWw","tuneIn":"https://tunein.com/radio/Commonwealth-Club-of-California-p1060/"}},"considerthis":{"id":"considerthis","title":"Consider This","tagline":"Make sense of the day","info":"Make sense of the day. Every weekday afternoon, Consider This helps you consider the major stories of the day in less than 15 minutes, featuring the reporting and storytelling resources of NPR. Plus, KQED’s Bianca Taylor brings you the local KQED news you need to know.","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Consider-This-Podcast-Tile-703x703-1.jpg","imageAlt":"Consider This from NPR and KQED","officialWebsiteLink":"/podcasts/considerthis","meta":{"site":"news","source":"kqed","order":"7"},"link":"/podcasts/considerthis","subscribe":{"apple":"https://podcasts.apple.com/podcast/id1503226625?mt=2&at=11l79Y&ct=nprdirectory","npr":"https://rpb3r.app.goo.gl/coronavirusdaily","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5ucHIub3JnLzUxMDM1NS9wb2RjYXN0LnhtbA","spotify":"https://open.spotify.com/show/3Z6JdCS2d0eFEpXHKI6WqH"}},"forum":{"id":"forum","title":"Forum","tagline":"The conversation starts here","info":"KQED’s live call-in program discussing local, state, national and international issues, as well as in-depth interviews.","airtime":"MON-FRI 9am-11am, 10pm-11pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Forum-Podcast-Tile-703x703-1.jpg","imageAlt":"KQED Forum with Mina Kim and Alexis Madrigal","officialWebsiteLink":"/forum","meta":{"site":"news","source":"kqed","order":"8"},"link":"/forum","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/kqeds-forum/id73329719","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM5NTU3MzgxNjMz","npr":"https://www.npr.org/podcasts/432307980/forum","stitcher":"https://www.stitcher.com/podcast/kqedfm-kqeds-forum-podcast","rss":"https://feeds.megaphone.fm/KQINC9557381633"}},"freakonomics-radio":{"id":"freakonomics-radio","title":"Freakonomics Radio","info":"Freakonomics Radio is a one-hour award-winning podcast and public-radio project hosted by Stephen Dubner, with co-author Steve Levitt as a regular guest. 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Hosted by Robin Young, Jeremy Hobson and Tonya Mosley.","airtime":"MON-THU 11am-12pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Here-And-Now-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"http://www.wbur.org/hereandnow","meta":{"site":"news","source":"npr"},"link":"/radio/program/here-and-now","subsdcribe":{"apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?mt=2&id=426698661","tuneIn":"https://tunein.com/radio/Here--Now-p211/","rss":"https://feeds.npr.org/510051/podcast.xml"}},"how-i-built-this":{"id":"how-i-built-this","title":"How I Built This with Guy Raz","info":"Guy Raz dives into the stories behind some of the world's best known companies. 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No other part of the globe has experienced such dynamic political and social change in recent years.","airtime":"SAT 3am-4am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Inside-Europe-Podcast-Tile-300x300-1.jpg","meta":{"site":"news","source":"Deutsche Welle"},"link":"/radio/program/inside-europe","subscribe":{"apple":"https://itunes.apple.com/us/podcast/inside-europe/id80106806?mt=2","tuneIn":"https://tunein.com/radio/Inside-Europe-p731/","rss":"https://partner.dw.com/xml/podcast_inside-europe"}},"latino-usa":{"id":"latino-usa","title":"Latino USA","airtime":"MON 1am-2am, SUN 6pm-7pm","info":"Latino USA, the radio journal of news and culture, is the only national, English-language radio program produced from a Latino perspective.","imageSrc":"https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/latinoUsa.jpg","officialWebsiteLink":"http://latinousa.org/","meta":{"site":"news","source":"npr"},"link":"/radio/program/latino-usa","subscribe":{"npr":"https://rpb3r.app.goo.gl/xtTd","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=79681317&at=11l79Y&ct=nprdirectory","tuneIn":"https://tunein.com/radio/Latino-USA-p621/","rss":"https://feeds.npr.org/510016/podcast.xml"}},"live-from-here-highlights":{"id":"live-from-here-highlights","title":"Live from Here Highlights","info":"Chris Thile steps to the mic as the host of Live from Here (formerly A Prairie Home Companion), a live public radio variety show. 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Updated Monday through Friday at about 3:30 p.m. PT.","airtime":"MON-FRI 4pm-4:30pm, MON-WED 6:30pm-7pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Marketplace-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.marketplace.org/","meta":{"site":"news","source":"American Public Media"},"link":"/radio/program/marketplace","subscribe":{"apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=201853034&at=11l79Y&ct=nprdirectory","tuneIn":"https://tunein.com/radio/APM-Marketplace-p88/","rss":"https://feeds.publicradio.org/public_feeds/marketplace-pm/rss/rss"}},"mindshift":{"id":"mindshift","title":"MindShift","tagline":"A podcast about the future of learning and how we raise our kids","info":"The MindShift podcast explores the innovations in education that are shaping how kids learn. Hosts Ki Sung and Katrina Schwartz introduce listeners to educators, researchers, parents and students who are developing effective ways to improve how kids learn. We cover topics like how fed-up administrators are developing surprising tactics to deal with classroom disruptions; how listening to podcasts are helping kids develop reading skills; the consequences of overparenting; and why interdisciplinary learning can engage students on all ends of the traditional achievement spectrum. This podcast is part of the MindShift education site, a division of KQED News. KQED is an NPR/PBS member station based in San Francisco. 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. 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