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She is a certified teacher of Soul Motion®, a conscious dance practice, and can sometimes be found in the Mojave desert or the Eastern Sierra.","avatar":"https://secure.gravatar.com/avatar/fa6bf8a74a2692973a5484e64ebd2b52?s=600&d=blank&r=g","twitter":"cosmologicalkat","facebook":null,"instagram":null,"linkedin":null,"sites":[{"site":"arts","roles":["contributor"]},{"site":"news","roles":["editor"]},{"site":"futureofyou","roles":["editor"]},{"site":"science","roles":["editor"]}],"headData":{"title":"Katrin Snow | KQED","description":"Senior Editor","ogImgSrc":"https://secure.gravatar.com/avatar/fa6bf8a74a2692973a5484e64ebd2b52?s=600&d=blank&r=g","twImgSrc":"https://secure.gravatar.com/avatar/fa6bf8a74a2692973a5484e64ebd2b52?s=600&d=blank&r=g"},"isLoading":false,"link":"/author/katsnow"}},"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_438270":{"type":"posts","id":"futureofyou_438270","meta":{"index":"posts_1591205157","site":"futureofyou","id":"438270","score":null,"sort":[1515619284000]},"guestAuthors":[],"slug":"what-your-fitbit-and-smartphone-saw-during-that-4-5-quake","title":"What the Fitbit Saw During That 4.4 Quake","publishDate":1515619284,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>Some of the most useful new research on earthquakes might be coming from -- well, you, via your smartphone and wearable activity tracker.\u003c/p>\n\u003caside class=\"pullquote alignright\">Berkeley users, near the epicenter, got the biggest wake-up call, according to Fitbit.\u003c/aside>\n\u003cp>As a magnitude 4.4 quake \u003ca href=\"https://ww2.kqed.org/news/2018/01/04/rude-awakening-moderate-quake-rattles-east-bay-overnight/\" target=\"_blank\" rel=\"noopener\">jolted people out of their beds\u003c/a> around the Bay Area last week, some of those folks had smartphones that were already at work sending data to scientists via the \u003ca href=\"http://myshake.berkeley.edu/\" target=\"_blank\" rel=\"noopener\">MyShake app\u003c/a> developed at the \u003ca href=\"http://seismo.berkeley.edu/\" target=\"_blank\" rel=\"noopener\">UC Berkeley Seismological Lab\u003c/a>.\u003c/p>\n\u003cp>According to Richard Allen, who heads the lab, instantaneous data came in from 59 phones armed with the app, which uses built-in motion sensors to detect the strength of the shaking and transmit the data to scientists. They can use that data to produce useful maps of the temblor's reach and impact. The app responds so quickly to a quake's first vibrations, that at some point in the next few years, plans are to make it part of a phone-based warning system that can alert users to quakes seconds before the shaking starts where they are.\u003cstrong>\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>[youtube https://www.youtube.com/watch?v=i-UH6oEx5JI&w=560&h=315]Allen was impressed that readings came in from phones farther than 60 miles from the epicenter.\u003c/p>\n\u003cp>\"The data is really clean for this event,\" wrote Allen in an email, \"which encourages us that we can use this for research purposes, and eventually earthquake early warning.\"\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The MyShake app is currently available only for Android phones. But potentially useful data is beginning to come in from other sources that weren't developed with earthquakes in mind.\u003c/p>\n\u003cp>\u003cstrong>Of Fitbits and Fitfulness\u003c/strong>\u003c/p>\n\u003cp>Developers of the \u003ca href=\"https://www.fitbit.com/home\" target=\"_blank\" rel=\"noopener\">Fitbit\u003c/a> series of wearable activity trackers say that when the quake struck, they also got a burst of data. Since the devices also track sleep patterns, they inferred from that data that about 4-in-10 of their Bay Area users were awakened by the quake, which struck at 2:39 a.m. Thursday near the historic Claremont Hotel in Berkeley.\u003c/p>\n\u003cp>The company declined to say how many Bay Area users it has, but a Fitbit spokeswoman told KQED that the numbers are based on \"a representative sample of tens of thousands of aggregated and anonymous Fitbit user data.\"\u003c/p>\n\u003cfigure id=\"attachment_438281\" class=\"wp-caption aligncenter\" style=\"max-width: 858px\">\u003ca href=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/01/FitbitWakes_180104.png\">\u003cimg class=\"wp-image-438281 size-full\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/01/FitbitWakes_180104.png\" alt=\"Fitbit quake graph\" width=\"858\" height=\"439\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/01/FitbitWakes_180104.png 858w, https://ww2.kqed.org/app/uploads/sites/13/2018/01/FitbitWakes_180104-160x82.png 160w, https://ww2.kqed.org/app/uploads/sites/13/2018/01/FitbitWakes_180104-800x409.png 800w, https://ww2.kqed.org/app/uploads/sites/13/2018/01/FitbitWakes_180104-768x393.png 768w, https://ww2.kqed.org/app/uploads/sites/13/2018/01/FitbitWakes_180104-240x123.png 240w, https://ww2.kqed.org/app/uploads/sites/13/2018/01/FitbitWakes_180104-375x192.png 375w, https://ww2.kqed.org/app/uploads/sites/13/2018/01/FitbitWakes_180104-520x266.png 520w\" sizes=\"(max-width: 858px) 100vw, 858px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Spike in graph shows people waking up as the Jan. 4 M4.4 quake shook the Bay Area, as registered by Fitbit devices. Click to enlarge. \u003ccite>(Fitbit)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Analysts at the San Francisco-based company could virtually map the epicenter of the quake by looking at the proportion of Fitbit users awakened in various locations. As one would expect, Berkeley users had the biggest wake-up call, with the percentage of wakeful customers leaping from 8 percent to 52 percent as soon as the Hayward Fault started slipping. (The fact that even 8 percent were already awake might imply that Fitbit has a loyal following among insomniacs.) The farther from the epicenter, the fewer Fitbit users were jarred awake -- just 18 percent in San Jose, for example.\u003c/p>\n\u003cp>It's still unclear what value this kind of data might have for seismic research.\u003c/p>\n\u003cp>\"Smartphone data has been quite useful for us at the [lab] so far, and other techniques such as using fiber optic cables are showing promise as well for seismology,\" notes Jennifer Strauss, who is in charge of outreach at the Berkeley lab. \"So, it would be very interesting to explore how other crowdsourced data can be used for earthquake science.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Fitbit analysts also noted that even relatively benign earthquakes can be night-wreckers, as it took an hour for most awakened users to return to \"normal sleep,\" and 90 minutes before those rocked out of bed achieved the REM stage of sleep.\u003c/p>\n\n","blocks":[],"excerpt":"Smartphone apps and wearable activity trackers are providing more data for quake scientists.","status":"publish","parent":0,"modified":1516140800,"stats":{"hasAudio":false,"hasVideo":true,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":15,"wordCount":621},"headData":{"title":"What the Fitbit Saw During That 4.4 Quake | KQED","description":"Smartphone apps and wearable activity trackers are providing more data for quake scientists.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"What the Fitbit Saw During That 4.4 Quake","datePublished":"2018-01-10T21:21:24.000Z","dateModified":"2018-01-16T22:13:20.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"438270 https://ww2.kqed.org/futureofyou/?p=438270","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/01/10/what-your-fitbit-and-smartphone-saw-during-that-4-5-quake/","disqusTitle":"What the Fitbit Saw During That 4.4 Quake","source":"KQED Future of You","nprByline":"Craig Miller\u003cbr />KQED Future of You","path":"/futureofyou/438270/what-your-fitbit-and-smartphone-saw-during-that-4-5-quake","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Some of the most useful new research on earthquakes might be coming from -- well, you, via your smartphone and wearable activity tracker.\u003c/p>\n\u003caside class=\"pullquote alignright\">Berkeley users, near the epicenter, got the biggest wake-up call, according to Fitbit.\u003c/aside>\n\u003cp>As a magnitude 4.4 quake \u003ca href=\"https://ww2.kqed.org/news/2018/01/04/rude-awakening-moderate-quake-rattles-east-bay-overnight/\" target=\"_blank\" rel=\"noopener\">jolted people out of their beds\u003c/a> around the Bay Area last week, some of those folks had smartphones that were already at work sending data to scientists via the \u003ca href=\"http://myshake.berkeley.edu/\" target=\"_blank\" rel=\"noopener\">MyShake app\u003c/a> developed at the \u003ca href=\"http://seismo.berkeley.edu/\" target=\"_blank\" rel=\"noopener\">UC Berkeley Seismological Lab\u003c/a>.\u003c/p>\n\u003cp>According to Richard Allen, who heads the lab, instantaneous data came in from 59 phones armed with the app, which uses built-in motion sensors to detect the strength of the shaking and transmit the data to scientists. They can use that data to produce useful maps of the temblor's reach and impact. The app responds so quickly to a quake's first vibrations, that at some point in the next few years, plans are to make it part of a phone-based warning system that can alert users to quakes seconds before the shaking starts where they are.\u003cstrong>\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/i-UH6oEx5JI'\n title='//www.youtube.com/embed/i-UH6oEx5JI'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>Allen was impressed that readings came in from phones farther than 60 miles from the epicenter.\u003c/p>\n\u003cp>\"The data is really clean for this event,\" wrote Allen in an email, \"which encourages us that we can use this for research purposes, and eventually earthquake early warning.\"\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 MyShake app is currently available only for Android phones. But potentially useful data is beginning to come in from other sources that weren't developed with earthquakes in mind.\u003c/p>\n\u003cp>\u003cstrong>Of Fitbits and Fitfulness\u003c/strong>\u003c/p>\n\u003cp>Developers of the \u003ca href=\"https://www.fitbit.com/home\" target=\"_blank\" rel=\"noopener\">Fitbit\u003c/a> series of wearable activity trackers say that when the quake struck, they also got a burst of data. Since the devices also track sleep patterns, they inferred from that data that about 4-in-10 of their Bay Area users were awakened by the quake, which struck at 2:39 a.m. Thursday near the historic Claremont Hotel in Berkeley.\u003c/p>\n\u003cp>The company declined to say how many Bay Area users it has, but a Fitbit spokeswoman told KQED that the numbers are based on \"a representative sample of tens of thousands of aggregated and anonymous Fitbit user data.\"\u003c/p>\n\u003cfigure id=\"attachment_438281\" class=\"wp-caption aligncenter\" style=\"max-width: 858px\">\u003ca href=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/01/FitbitWakes_180104.png\">\u003cimg class=\"wp-image-438281 size-full\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/01/FitbitWakes_180104.png\" alt=\"Fitbit quake graph\" width=\"858\" height=\"439\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2018/01/FitbitWakes_180104.png 858w, https://ww2.kqed.org/app/uploads/sites/13/2018/01/FitbitWakes_180104-160x82.png 160w, https://ww2.kqed.org/app/uploads/sites/13/2018/01/FitbitWakes_180104-800x409.png 800w, https://ww2.kqed.org/app/uploads/sites/13/2018/01/FitbitWakes_180104-768x393.png 768w, https://ww2.kqed.org/app/uploads/sites/13/2018/01/FitbitWakes_180104-240x123.png 240w, https://ww2.kqed.org/app/uploads/sites/13/2018/01/FitbitWakes_180104-375x192.png 375w, https://ww2.kqed.org/app/uploads/sites/13/2018/01/FitbitWakes_180104-520x266.png 520w\" sizes=\"(max-width: 858px) 100vw, 858px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Spike in graph shows people waking up as the Jan. 4 M4.4 quake shook the Bay Area, as registered by Fitbit devices. Click to enlarge. \u003ccite>(Fitbit)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Analysts at the San Francisco-based company could virtually map the epicenter of the quake by looking at the proportion of Fitbit users awakened in various locations. As one would expect, Berkeley users had the biggest wake-up call, with the percentage of wakeful customers leaping from 8 percent to 52 percent as soon as the Hayward Fault started slipping. (The fact that even 8 percent were already awake might imply that Fitbit has a loyal following among insomniacs.) The farther from the epicenter, the fewer Fitbit users were jarred awake -- just 18 percent in San Jose, for example.\u003c/p>\n\u003cp>It's still unclear what value this kind of data might have for seismic research.\u003c/p>\n\u003cp>\"Smartphone data has been quite useful for us at the [lab] so far, and other techniques such as using fiber optic cables are showing promise as well for seismology,\" notes Jennifer Strauss, who is in charge of outreach at the Berkeley lab. \"So, it would be very interesting to explore how other crowdsourced data can be used for earthquake science.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Fitbit analysts also noted that even relatively benign earthquakes can be night-wreckers, as it took an hour for most awakened users to return to \"normal sleep,\" and 90 minutes before those rocked out of bed achieved the REM stage of sleep.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/438270/what-your-fitbit-and-smartphone-saw-during-that-4-5-quake","authors":["byline_futureofyou_438270"],"categories":["futureofyou_1060","futureofyou_452","futureofyou_1","futureofyou_73"],"tags":["futureofyou_124","futureofyou_1449","futureofyou_1450"],"featImg":"futureofyou_438320","label":"source_futureofyou_438270"},"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_160842":{"type":"posts","id":"futureofyou_160842","meta":{"index":"posts_1591205157","site":"futureofyou","id":"160842","score":null,"sort":[1462916001000]},"guestAuthors":[],"slug":"social-media-uncovers-rare-diagnosis-after-years-of-frustration","title":"Through Social Media, Family Connects to Rare Diagnosis – And Hope","publishDate":1462916001,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>If you are suffering from an illness fewer than a dozen people in the world are known to have, getting a proper diagnosis can start to feel like a hunt for something that doesn't exist.\u003c/p>\n\u003cp>That's the position one family found themselves in before they turned to social media in search of an answer, managing to discover in one day an answer that had eluded doctors for years.\u003c/p>\n\u003caside class=\"pullquote alignright\">'These days there are ribbons and awareness weeks for so many diseases, but when yours is ultra-rare, you feel completely isolated. You feel like you’re never going to hear another person say, ‘Us too!’ And being connected to other families changes all that.' \u003ccite>Bo Bigelow\u003c/cite>\u003c/aside>\n\u003cp>It's a story that illustrates the power of crowdsourcing. Tess Bigelow, six years old, became the eighth person in the world known to have a mutation of the gene called USP7. This defective gene could be the reason she functions at the level of an 18-month-old child, with developmental delays in basic functions such as walking and talking.\u003c/p>\n\u003cp>Last August, Bo Bigelow, Tess' father, put up \u003ca href=\"http://www.portlandrootsmedia.com/tess-genetic-mystery\" target=\"_blank\">a website\u003c/a> about his daughter's genetic mutation then posted it to Facebook and Twitter. From a \u003ca href=\"https://www.bcm.edu/news/genetics/diagnostic-discovery-through-social-media\" target=\"_blank\">press release\u003c/a> about the case sent out last September by Baylor College of Medicine in Houston:\u003c/p>\n\u003cblockquote>\u003cp>\"Help us find others like Tess.\" Bo Bigelow's plea jumps off the page of his blog, echoing across the continent from his leafy green home city of Portland, Maine.\u003c/p>\n\u003cp>When he posted his call to action, all he knew was that his young daughter has a mutation in her USP7 gene and that she has global developmental delay, hip dysplasia and visual impairment caused by her brain (not a problem in her eyes themselves) among other health issues.\u003c/p>\u003c/blockquote>\n\u003cp>Bo and his wife, Kate, who live in Maine, hoped to find other families affected by the same mutation.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"We thought we were embarking on this months- or years-long odyssey to find at least one other person,\" says Bo Bigelow. \"And instead, by that evening we were on the horn with Baylor. They found us in less than 24 hours, and it’s from people being so great about spreading it and having their friends spread it.\"\u003c/p>\n\u003cp>It was a friend of Bigelow's brother-in-law who \u003ca href=\"https://www.reddit.com/r/genetics/comments/3gr6a8/hi_rgenetics_need_your_help_i_have_a_little/\" target=\"_blank\">posted\u003c/a> Tess' case on Reddit. That's where a worker at a Baylor lab spotted it -- a lab that is one of the few in the world studying USP7.\u003c/p>\n\u003cfigure id=\"attachment_161424\" class=\"wp-caption aligncenter\" style=\"max-width: 720px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/05/special-olympics-e1462926780310.jpg\">\u003cimg class=\"size-full wp-image-161424\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/05/special-olympics-e1462926780310.jpg\" alt=\"Tess walked 100 meters this spring in the Special Olympics. She needed some help staying in her lane, and had to stop to gather her stamina, but crossed the finish line to the cheers of her family. Her father did a podcast episode about the event.\" width=\"720\" height=\"592\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/05/special-olympics-e1462926780310.jpg 720w, https://ww2.kqed.org/app/uploads/sites/13/2016/05/special-olympics-e1462926780310-400x329.jpg 400w\" sizes=\"(max-width: 720px) 100vw, 720px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Tess walked 100 meters this spring in the Special Olympics. She needed some help staying in her lane, and had to stop to gather her stamina, but crossed the finish line to the cheers of her family. Her father did a \u003ca href=\"http://www.portlandrootsmedia.com/strongerpodcast/2016/5/4/68-special-is-an-understatement\" target=\"_blank\">podcast episode\u003c/a> about the event. \u003ccite>(Bo Bigelow/Facebook)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Most striking of all, Bigelow says, that first email from Mike Fountain, a predoctoral fellow in the lab, said the Baylor team had identified other families who had children affected by the same genetic mutation. Just connecting with them has eased Bo and Kate's worries.\u003c/p>\n\u003cp>\"These days there are ribbons and awareness-weeks for so many diseases,\" Bigelow says, \"but when yours is ultra-rare, you feel completely isolated. You feel like you're never going to hear another person say, 'Us too!' And being connected to other families changes all that.\"\u003c/p>\n\u003cp>Fountain's colleague, researcher and Baylor genetics professor Christian Schaaf, had already found seven children around the world with USP7 mutations and symptoms similar to Tess'. Schaaf and 18 of his colleagues were getting ready to publish \u003ca href=\"http://www.cell.com/molecular-cell/abstract/S1097-2765(15)00617-6?_returnURL=http%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS1097276515006176%3Fshowall%3Dtrue\">research\u003c/a> in the journal \u003cem>Molecular Cell \u003c/em>describing how USP7 becomes a \"disease gene.\"\u003c/p>\n\u003cp>USP7 and two other genes are critical in the process of recycling and breaking down the proteins in a cell that are no longer of use. This process keeps all the work of our cells in balance; when it's out of whack, it can lead to cancers, neurodegenerative diseases or genetic disorders.\u003c/p>\n\u003cp>https://youtu.be/TF7zOV0KT0s\u003c/p>\n\u003cp>Bigelow says the family doesn't yet have official confirmation that Tess' symptoms are caused by her genetic mutation. Baylor researchers are examining that now and he expects to hear soon whether the lab will accept her for inclusion in potential treatments, now in development. Meanwhile, he says, Baylor asked him to use his website and social media skills to search out other families, and he's found two more who have children with a USP7 mutation.\u003c/p>\n\u003cp>\u003cstrong>Crowdsourcing Diagnoses Takes Hold\u003c/strong>\u003c/p>\n\u003cp>Patients or parents like Tess' who are seeking answers to seemingly unsolvable medical mysteries have new tools to reach out, not only on social media, but in crowdsourcing websites like \u003ca href=\"https://www.crowdmed.com/\" target=\"_blank\">CrowdMed\u003c/a>, a subscription service for people seeking answers to medical conundrums.\u003c/p>\n\u003cp>At CrowdMed, people who have symptoms but have yet to find a diagnosis seek opinions from the site's \"medical detectives,\" only some of whom are medical professionals.\u003c/p>\n\u003cp>The process involves patients posting their symptoms and other relevant data, opening their case up to the site's diagnostic community. When a diagnosis is offered, the other \"detectives\" vote on it, and that opinion moves up or down according to those votes and the weight assigned to each diagnostician, which is determined by their past accuracy.\u003c/p>\n\u003cp>\"We call it a stock market for diagnoses,\" CrowdMed co-founder Jessica Greenwalt told Future of You editor Jon Brooks at a University of San Francisco medical technology conference in March.\u003c/p>\n\u003cp>She said the site had resolved close to 800 cases in which the patient has reported the CrowdMed diagnosis was correct.\u003c/p>\n\u003cp>\"The nice thing about not limiting it to physicians,\" Greenwalt said, \"is we get people who are not stuck in the same method of thought training. Or they're not afraid to suggest the rare diagnosis. We see this a lot, where doctors are afraid to say it might be this rare condition.\"\u003c/p>\n\u003cp>A writer who \u003ca href=\"http://www.elle.com/culture/news/a28783/the-crowd-will-see-you-now/\" target=\"_blank\">reviewed C\u003c/a>rowdMed for Elle discovered one of the common pitfalls of self-diagnosis: worrying about a range of diseases she'd never heard of. But she also wrote she felt encouraged to do research about her health and supported by the care people offered in listening to and responding to her case.\u003c/p>\n\u003cp>\"While reporting this piece,\" wrote Molly Langmuir, \"I vacillated between viewing CrowdMed as a dire indictment of our medical system—things are so bad we've had to turn to a bunch of strangers who may or may not have had medical training—and a heartening sign of progress, a surprisingly effective way of putting the 'care' back into health\u003c/p>\n\u003cp>\u003ca href=\"https://www.mygene2.org/MyGene2/\" target=\"_blank\">MyGene2\u003c/a> is another crowdsourcing site. It serves as an information hub where those with rare genetic disorders can share information, and researchers and clinicians working with a particular condition or gene can contact people who may benefit from new treatments or ideas.\u003c/p>\n\u003cp>The site just went live this spring and already features more than 100 families and 87 different problematic genes.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Jon Brooks contributed to this post.\u003c/em>\u003c/p>\n\n","blocks":[],"excerpt":"Only after turning to social media did six-year-old Tess Bigelow's parents learn of a lab researching her rare genetic mutation.","status":"publish","parent":0,"modified":1476850729,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":28,"wordCount":1210},"headData":{"title":"Through Social Media, Family Connects to Rare Diagnosis – And Hope | KQED","description":"Only after turning to social media did six-year-old Tess Bigelow's parents learn of a lab researching her rare genetic mutation.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Through Social Media, Family Connects to Rare Diagnosis – And Hope","datePublished":"2016-05-10T21:33:21.000Z","dateModified":"2016-10-19T04:18:49.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"160842 http://ww2.kqed.org/futureofyou/?p=160842","disqusUrl":"https://ww2.kqed.org/futureofyou/2016/05/10/social-media-uncovers-rare-diagnosis-after-years-of-frustration/","disqusTitle":"Through Social Media, Family Connects to Rare Diagnosis – And Hope","path":"/futureofyou/160842/social-media-uncovers-rare-diagnosis-after-years-of-frustration","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>If you are suffering from an illness fewer than a dozen people in the world are known to have, getting a proper diagnosis can start to feel like a hunt for something that doesn't exist.\u003c/p>\n\u003cp>That's the position one family found themselves in before they turned to social media in search of an answer, managing to discover in one day an answer that had eluded doctors for years.\u003c/p>\n\u003caside class=\"pullquote alignright\">'These days there are ribbons and awareness weeks for so many diseases, but when yours is ultra-rare, you feel completely isolated. You feel like you’re never going to hear another person say, ‘Us too!’ And being connected to other families changes all that.' \u003ccite>Bo Bigelow\u003c/cite>\u003c/aside>\n\u003cp>It's a story that illustrates the power of crowdsourcing. Tess Bigelow, six years old, became the eighth person in the world known to have a mutation of the gene called USP7. This defective gene could be the reason she functions at the level of an 18-month-old child, with developmental delays in basic functions such as walking and talking.\u003c/p>\n\u003cp>Last August, Bo Bigelow, Tess' father, put up \u003ca href=\"http://www.portlandrootsmedia.com/tess-genetic-mystery\" target=\"_blank\">a website\u003c/a> about his daughter's genetic mutation then posted it to Facebook and Twitter. From a \u003ca href=\"https://www.bcm.edu/news/genetics/diagnostic-discovery-through-social-media\" target=\"_blank\">press release\u003c/a> about the case sent out last September by Baylor College of Medicine in Houston:\u003c/p>\n\u003cblockquote>\u003cp>\"Help us find others like Tess.\" Bo Bigelow's plea jumps off the page of his blog, echoing across the continent from his leafy green home city of Portland, Maine.\u003c/p>\n\u003cp>When he posted his call to action, all he knew was that his young daughter has a mutation in her USP7 gene and that she has global developmental delay, hip dysplasia and visual impairment caused by her brain (not a problem in her eyes themselves) among other health issues.\u003c/p>\u003c/blockquote>\n\u003cp>Bo and his wife, Kate, who live in Maine, hoped to find other families affected by the same mutation.\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>\"We thought we were embarking on this months- or years-long odyssey to find at least one other person,\" says Bo Bigelow. \"And instead, by that evening we were on the horn with Baylor. They found us in less than 24 hours, and it’s from people being so great about spreading it and having their friends spread it.\"\u003c/p>\n\u003cp>It was a friend of Bigelow's brother-in-law who \u003ca href=\"https://www.reddit.com/r/genetics/comments/3gr6a8/hi_rgenetics_need_your_help_i_have_a_little/\" target=\"_blank\">posted\u003c/a> Tess' case on Reddit. That's where a worker at a Baylor lab spotted it -- a lab that is one of the few in the world studying USP7.\u003c/p>\n\u003cfigure id=\"attachment_161424\" class=\"wp-caption aligncenter\" style=\"max-width: 720px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/05/special-olympics-e1462926780310.jpg\">\u003cimg class=\"size-full wp-image-161424\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/05/special-olympics-e1462926780310.jpg\" alt=\"Tess walked 100 meters this spring in the Special Olympics. She needed some help staying in her lane, and had to stop to gather her stamina, but crossed the finish line to the cheers of her family. Her father did a podcast episode about the event.\" width=\"720\" height=\"592\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/05/special-olympics-e1462926780310.jpg 720w, https://ww2.kqed.org/app/uploads/sites/13/2016/05/special-olympics-e1462926780310-400x329.jpg 400w\" sizes=\"(max-width: 720px) 100vw, 720px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Tess walked 100 meters this spring in the Special Olympics. She needed some help staying in her lane, and had to stop to gather her stamina, but crossed the finish line to the cheers of her family. Her father did a \u003ca href=\"http://www.portlandrootsmedia.com/strongerpodcast/2016/5/4/68-special-is-an-understatement\" target=\"_blank\">podcast episode\u003c/a> about the event. \u003ccite>(Bo Bigelow/Facebook)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Most striking of all, Bigelow says, that first email from Mike Fountain, a predoctoral fellow in the lab, said the Baylor team had identified other families who had children affected by the same genetic mutation. Just connecting with them has eased Bo and Kate's worries.\u003c/p>\n\u003cp>\"These days there are ribbons and awareness-weeks for so many diseases,\" Bigelow says, \"but when yours is ultra-rare, you feel completely isolated. You feel like you're never going to hear another person say, 'Us too!' And being connected to other families changes all that.\"\u003c/p>\n\u003cp>Fountain's colleague, researcher and Baylor genetics professor Christian Schaaf, had already found seven children around the world with USP7 mutations and symptoms similar to Tess'. Schaaf and 18 of his colleagues were getting ready to publish \u003ca href=\"http://www.cell.com/molecular-cell/abstract/S1097-2765(15)00617-6?_returnURL=http%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS1097276515006176%3Fshowall%3Dtrue\">research\u003c/a> in the journal \u003cem>Molecular Cell \u003c/em>describing how USP7 becomes a \"disease gene.\"\u003c/p>\n\u003cp>USP7 and two other genes are critical in the process of recycling and breaking down the proteins in a cell that are no longer of use. This process keeps all the work of our cells in balance; when it's out of whack, it can lead to cancers, neurodegenerative diseases or genetic disorders.\u003c/p>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/TF7zOV0KT0s'\n title='//www.youtube.com/embed/TF7zOV0KT0s'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>Bigelow says the family doesn't yet have official confirmation that Tess' symptoms are caused by her genetic mutation. Baylor researchers are examining that now and he expects to hear soon whether the lab will accept her for inclusion in potential treatments, now in development. Meanwhile, he says, Baylor asked him to use his website and social media skills to search out other families, and he's found two more who have children with a USP7 mutation.\u003c/p>\n\u003cp>\u003cstrong>Crowdsourcing Diagnoses Takes Hold\u003c/strong>\u003c/p>\n\u003cp>Patients or parents like Tess' who are seeking answers to seemingly unsolvable medical mysteries have new tools to reach out, not only on social media, but in crowdsourcing websites like \u003ca href=\"https://www.crowdmed.com/\" target=\"_blank\">CrowdMed\u003c/a>, a subscription service for people seeking answers to medical conundrums.\u003c/p>\n\u003cp>At CrowdMed, people who have symptoms but have yet to find a diagnosis seek opinions from the site's \"medical detectives,\" only some of whom are medical professionals.\u003c/p>\n\u003cp>The process involves patients posting their symptoms and other relevant data, opening their case up to the site's diagnostic community. When a diagnosis is offered, the other \"detectives\" vote on it, and that opinion moves up or down according to those votes and the weight assigned to each diagnostician, which is determined by their past accuracy.\u003c/p>\n\u003cp>\"We call it a stock market for diagnoses,\" CrowdMed co-founder Jessica Greenwalt told Future of You editor Jon Brooks at a University of San Francisco medical technology conference in March.\u003c/p>\n\u003cp>She said the site had resolved close to 800 cases in which the patient has reported the CrowdMed diagnosis was correct.\u003c/p>\n\u003cp>\"The nice thing about not limiting it to physicians,\" Greenwalt said, \"is we get people who are not stuck in the same method of thought training. Or they're not afraid to suggest the rare diagnosis. We see this a lot, where doctors are afraid to say it might be this rare condition.\"\u003c/p>\n\u003cp>A writer who \u003ca href=\"http://www.elle.com/culture/news/a28783/the-crowd-will-see-you-now/\" target=\"_blank\">reviewed C\u003c/a>rowdMed for Elle discovered one of the common pitfalls of self-diagnosis: worrying about a range of diseases she'd never heard of. But she also wrote she felt encouraged to do research about her health and supported by the care people offered in listening to and responding to her case.\u003c/p>\n\u003cp>\"While reporting this piece,\" wrote Molly Langmuir, \"I vacillated between viewing CrowdMed as a dire indictment of our medical system—things are so bad we've had to turn to a bunch of strangers who may or may not have had medical training—and a heartening sign of progress, a surprisingly effective way of putting the 'care' back into health\u003c/p>\n\u003cp>\u003ca href=\"https://www.mygene2.org/MyGene2/\" target=\"_blank\">MyGene2\u003c/a> is another crowdsourcing site. It serves as an information hub where those with rare genetic disorders can share information, and researchers and clinicians working with a particular condition or gene can contact people who may benefit from new treatments or ideas.\u003c/p>\n\u003cp>The site just went live this spring and already features more than 100 families and 87 different problematic genes.\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>Jon Brooks contributed to this post.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/160842/social-media-uncovers-rare-diagnosis-after-years-of-frustration","authors":["235"],"categories":["futureofyou_1060"],"tags":["futureofyou_914","futureofyou_124","futureofyou_915","futureofyou_916"],"featImg":"futureofyou_161306","label":"futureofyou"},"futureofyou_800":{"type":"posts","id":"futureofyou_800","meta":{"index":"posts_1591205157","site":"futureofyou","id":"800","score":null,"sort":[1427305086000]},"guestAuthors":[],"slug":"how-did-ebola-volunteers-know-where-to-go-in-liberia-crowdsourcing","title":"How Did Ebola Volunteers Know Where to Go in Liberia? Crowdsourcing!","publishDate":1427305086,"format":"standard","headTitle":"Future of You | KQED Future of You | KQED Science","labelTerm":{"term":54,"site":"futureofyou"},"content":"\u003cp>From more than 900 miles away, Kpetermeni Siakor helped get volunteers to the right neighborhoods in his native Liberia during the height of the Ebola epidemic.\u003c/p>\n\u003cp>He did it with \u003ca href=\"http://www.ushahidi.com/\">Ushahidi\u003c/a>, crowdsourcing software that was developed in Kenya in 2008, when the country experienced a wave of post-election violence. The word Ushahidi means testimony in Swahili.\u003c/p>\n\u003cp>\"The government had shut down internet connections and radio stations, so Ushahidi was born out of the need to let people know what is happening,\" says Siakor, 26. He's a computer science student at \u003ca href=\"http://www.ashesi.edu.gh/\">Ashesi University College\u003c/a> in Accra, Ghana, and receives financial support from the \u003ca href=\"http://mastercardfdnscholars.org/\">MasterCard Foundation Scholars Program\u003c/a>.\u003c/p>\n\u003cp>In its infancy, citizen journalists would map violent incidents and peace efforts on Ushahidi. Siakor worked with a team that used the software following similarly contentious elections in Liberia in 2011. Afterward, his colleagues continued to run a technology hub in Monrovia called \u003ca href=\"http://ilabliberia.org/\">iLab Liberia\u003c/a> to develop technology knowledge. When Ebola broke out, they already had a perfect tool to share data and aid emergency responders in real time.\u003c/p>\n\u003cp>Here's how it worked. Siakor and his team assigned volunteers to the emergency dispatch unit in Liberia, which would receive phone calls from the public reporting any possible Ebola cases. The volunteers would enter details into the Ushahidi system. So the Ministry of Health could see the documents in real-time, as volunteers updated the database. Before using Ushahidi, it took five days or more to get reports on the Ebola cases to the Ministry of Health.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Since the team collected information about where people were contracting Ebola and where they were being treated, they could use that data to map Liberia's health centers and redistribute supplies. \"There were some organizations that were dividing supplies like chlorine and gloves to various health centers,\" explains Siakor. Because he could track where Ebola patients were and where they were receiving treatment, he could help direct supplies and volunteers to where they were needed most.\u003c/p>\n\u003cp>While he was managing Liberia's Ebola response from afar, Siakor worried about his family, who live just outside Monrovia. \"They ended up comforting me,\" he says. \"Whenever I called home they kept saying, 'Why are you so worried? People are fine!'\" Even though there is health center nearby, no one in the community was infected with Ebola. \"I'm really really grateful that none of them got infected,\" says Siakor.\u003c/p>\n\u003cp>From friends and family, he hears things are different at home since Ebola broke out a year ago. \"My dad tells me that if you go to town you might come back with totally bleached hands because you wash your hands [with chlorine solution] in every office you enter,\" says Siakor. The pace of development, which was accelerating before Ebola, seems to have come to a complete halt. It doesn't help that many businesses and schools closed during the outbreak. \"Generally the very high spirits that you typically find on the streets in Liberia, you don't hear that anymore,\" he says.\u003c/p>\n\u003cp>Siakor thinks that the best way to move forward is to rebuild basic health services in Liberia. And not by bringing in international groups.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"People were just waiting for help to come from outside,\" says Siakor. \"That just left the entire country vulnerable.\" He wants Liberia to be able to help itself. \"Ebola has shown that we need to start looking at local solutions,\" he says.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2015 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=How+Did+Ebola+Volunteers+Know+Where+To+Go+In+Liberia%3F+Crowdsourcing%21&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\" alt=\"\">\u003c/div>\n\n","blocks":[],"excerpt":"Kpetermeni Siakor was 900 miles from home when Ebola struck. But with special software, he helped direct volunteers and supplies to the right spots.","status":"publish","parent":0,"modified":1428349589,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":12,"wordCount":584},"headData":{"title":"How Did Ebola Volunteers Know Where to Go in Liberia? Crowdsourcing! | KQED","description":"Kpetermeni Siakor was 900 miles from home when Ebola struck. But with special software, he helped direct volunteers and supplies to the right spots.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"How Did Ebola Volunteers Know Where to Go in Liberia? Crowdsourcing!","datePublished":"2015-03-25T17:38:06.000Z","dateModified":"2015-04-06T19:46:29.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"800 http://ww2.kqed.org/futureofyou/?p=800","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/03/25/how-did-ebola-volunteers-know-where-to-go-in-liberia-crowdsourcing/","disqusTitle":"How Did Ebola Volunteers Know Where to Go in Liberia? Crowdsourcing!","nprByline":"Poncie Rutsch","nprStoryId":"394266190","nprApiLink":"http://api.npr.org/query?id=394266190&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"http://www.npr.org/blogs/goatsandsoda/2015/03/25/394266190/how-did-ebola-volunteers-know-where-to-go-in-liberia-crowdsourcing?ft=nprml&f=394266190","nprRetrievedStory":"1","nprPubDate":"Wed, 25 Mar 2015 11:32:00 -0400","nprStoryDate":"Wed, 25 Mar 2015 11:15:00 -0400","nprLastModifiedDate":"Wed, 25 Mar 2015 11:32:11 -0400","path":"/futureofyou/800/how-did-ebola-volunteers-know-where-to-go-in-liberia-crowdsourcing","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>From more than 900 miles away, Kpetermeni Siakor helped get volunteers to the right neighborhoods in his native Liberia during the height of the Ebola epidemic.\u003c/p>\n\u003cp>He did it with \u003ca href=\"http://www.ushahidi.com/\">Ushahidi\u003c/a>, crowdsourcing software that was developed in Kenya in 2008, when the country experienced a wave of post-election violence. The word Ushahidi means testimony in Swahili.\u003c/p>\n\u003cp>\"The government had shut down internet connections and radio stations, so Ushahidi was born out of the need to let people know what is happening,\" says Siakor, 26. He's a computer science student at \u003ca href=\"http://www.ashesi.edu.gh/\">Ashesi University College\u003c/a> in Accra, Ghana, and receives financial support from the \u003ca href=\"http://mastercardfdnscholars.org/\">MasterCard Foundation Scholars Program\u003c/a>.\u003c/p>\n\u003cp>In its infancy, citizen journalists would map violent incidents and peace efforts on Ushahidi. Siakor worked with a team that used the software following similarly contentious elections in Liberia in 2011. Afterward, his colleagues continued to run a technology hub in Monrovia called \u003ca href=\"http://ilabliberia.org/\">iLab Liberia\u003c/a> to develop technology knowledge. When Ebola broke out, they already had a perfect tool to share data and aid emergency responders in real time.\u003c/p>\n\u003cp>Here's how it worked. Siakor and his team assigned volunteers to the emergency dispatch unit in Liberia, which would receive phone calls from the public reporting any possible Ebola cases. The volunteers would enter details into the Ushahidi system. So the Ministry of Health could see the documents in real-time, as volunteers updated the database. Before using Ushahidi, it took five days or more to get reports on the Ebola cases to the Ministry of 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>Since the team collected information about where people were contracting Ebola and where they were being treated, they could use that data to map Liberia's health centers and redistribute supplies. \"There were some organizations that were dividing supplies like chlorine and gloves to various health centers,\" explains Siakor. Because he could track where Ebola patients were and where they were receiving treatment, he could help direct supplies and volunteers to where they were needed most.\u003c/p>\n\u003cp>While he was managing Liberia's Ebola response from afar, Siakor worried about his family, who live just outside Monrovia. \"They ended up comforting me,\" he says. \"Whenever I called home they kept saying, 'Why are you so worried? People are fine!'\" Even though there is health center nearby, no one in the community was infected with Ebola. \"I'm really really grateful that none of them got infected,\" says Siakor.\u003c/p>\n\u003cp>From friends and family, he hears things are different at home since Ebola broke out a year ago. \"My dad tells me that if you go to town you might come back with totally bleached hands because you wash your hands [with chlorine solution] in every office you enter,\" says Siakor. The pace of development, which was accelerating before Ebola, seems to have come to a complete halt. It doesn't help that many businesses and schools closed during the outbreak. \"Generally the very high spirits that you typically find on the streets in Liberia, you don't hear that anymore,\" he says.\u003c/p>\n\u003cp>Siakor thinks that the best way to move forward is to rebuild basic health services in Liberia. And not by bringing in international groups.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"People were just waiting for help to come from outside,\" says Siakor. \"That just left the entire country vulnerable.\" He wants Liberia to be able to help itself. \"Ebola has shown that we need to start looking at local solutions,\" he says.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2015 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=How+Did+Ebola+Volunteers+Know+Where+To+Go+In+Liberia%3F+Crowdsourcing%21&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\" alt=\"\">\u003c/div>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/800/how-did-ebola-volunteers-know-where-to-go-in-liberia-crowdsourcing","authors":["byline_futureofyou_800"],"programs":["futureofyou_54"],"categories":["futureofyou_1"],"tags":["futureofyou_124","futureofyou_122","futureofyou_80","futureofyou_123"],"featImg":"futureofyou_801","label":"futureofyou_54"}},"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. 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You ask the questions. You decide what Bay Curious investigates. And you join us on the journey to find the answers.","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Bay-Curious-Podcast-Tile-703x703-1.jpg","imageAlt":"\"KQED Bay Curious","officialWebsiteLink":"/news/series/baycurious","meta":{"site":"news","source":"kqed","order":"4"},"link":"/podcasts/baycurious","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/bay-curious/id1172473406","npr":"https://www.npr.org/podcasts/500557090/bay-curious","rss":"https://ww2.kqed.org/news/category/bay-curious-podcast/feed/podcast","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93dzIua3FlZC5vcmcvbmV3cy9jYXRlZ29yeS9iYXktY3VyaW91cy1wb2RjYXN0L2ZlZWQvcG9kY2FzdA","stitcher":"https://www.stitcher.com/podcast/kqed/bay-curious","spotify":"https://open.spotify.com/show/6O76IdmhixfijmhTZLIJ8k"}},"bbc-world-service":{"id":"bbc-world-service","title":"BBC World Service","info":"The day's top stories from BBC News compiled twice daily in the week, once at weekends.","airtime":"MON-FRI 9pm-10pm, TUE-FRI 1am-2am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/BBC-World-Service-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.bbc.co.uk/sounds/play/live:bbc_world_service","meta":{"site":"news","source":"BBC World Service"},"link":"/radio/program/bbc-world-service","subscribe":{"apple":"https://itunes.apple.com/us/podcast/global-news-podcast/id135067274?mt=2","tuneIn":"https://tunein.com/radio/BBC-World-Service-p455581/","rss":"https://podcasts.files.bbci.co.uk/p02nq0gn.rss"}},"code-switch-life-kit":{"id":"code-switch-life-kit","title":"Code Switch / Life Kit","info":"\u003cem>Code Switch\u003c/em>, which listeners will hear in the first part of the hour, has fearless and much-needed conversations about race. Hosted by journalists of color, the show tackles the subject of race head-on, exploring how it impacts every part of society — from politics and pop culture to history, sports and more.\u003cbr />\u003cbr />\u003cem>Life Kit\u003c/em>, which will be in the second part of the hour, guides you through spaces and feelings no one prepares you for — from finances to mental health, from workplace microaggressions to imposter syndrome, from relationships to parenting. The show features experts with real world experience and shares their knowledge. 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. 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