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class=\"attachment\">\u003ca href='http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2011/04/alzheimer2.jpg' title='alzheimer'>\u003cimg width=\"300\" height=\"200\" src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2011/04/alzheimer2.jpg\" class=\"attachment-medium\" alt=\"alzheimer\" title=\"alzheimer\" />\u003c/a>\u003c/p>","imgSizes":{"guest-author-32":{"file":"https://ww2.kqed.org/app/uploads/sites/39/2011/04/alzheimer2-32x32.jpg","width":32,"height":32,"mimeType":"image/jpeg"},"guest-author-64":{"file":"https://ww2.kqed.org/app/uploads/sites/39/2011/04/alzheimer2-64x64.jpg","width":64,"height":64,"mimeType":"image/jpeg"},"guest-author-96":{"file":"https://ww2.kqed.org/app/uploads/sites/39/2011/04/alzheimer2-96x96.jpg","width":96,"height":96,"mimeType":"image/jpeg"},"guest-author-128":{"file":"https://ww2.kqed.org/app/uploads/sites/39/2011/04/alzheimer2-128x128.jpg","width":128,"height":128,"mimeType":"image/jpeg"},"detail":{"file":"https://ww2.kqed.org/app/uploads/sites/39/2011/04/alzheimer2-75x75.jpg","width":75,"height":75,"mimeType":"image/jpeg"},"kqedFullSize":{"file":"https://ww2.kqed.org/app/uploads/sites/39/2011/04/alzheimer2.jpg","width":300,"height":200}},"fetchFailed":false,"isLoading":false}},"audioPlayerReducer":{"postId":"stream_live"},"authorsReducer":{"dr-barry-starr":{"type":"authors","id":"6177","meta":{"index":"authors_1591205172","id":"6177","found":true},"name":"Dr. Barry Starr","firstName":"Dr. Barry","lastName":"Starr","slug":"dr-barry-starr","email":"bstarr@thetech.org","display_author_email":false,"staff_mastheads":[],"title":null,"bio":"Dr. Barry Starr (\u003ca href=\"https://twitter.com/geneticsboy\">@geneticsboy\u003c/a>) is a Geneticist-in-Residence at The Tech Museum of Innovation in San Jose, CA and runs their Stanford at The Tech program. 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":"/"}},"quest_14601":{"type":"posts","id":"quest_14601","meta":{"index":"posts_1591205157","site":"quest","id":"14601","score":null,"sort":[1306166662000]},"guestAuthors":[],"slug":"uncovering-risk-one-gene-at-a-time","title":"Uncovering Risk One Gene at a Time","publishDate":1306166662,"format":"standard","headTitle":"QUEST | KQED Science","labelTerm":{"site":"quest"},"content":"\u003cp>\u003cspan class=\"left\">\u003ca href=\"http://www.kqed.org/quest\">\u003cimg src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2011/05/MathFormula2.jpg\" alt=\"\">\u003c/a>\u003cem>Many genetic tests just uncover one small bit of\u003cbr>your disease risk formula.\u003cbr>Image courtesy of \u003ca href=\"http://en.wikipedia.org/wiki/File:Math_lecture_at_TKK.JPG\">Tungsten\u003c/a>\u003c/em>\u003c/span>\u003c/p>\n\u003cp>Since 23andMe is offering data on Alzheimer’s risk but only with an upgrade, I decided to get that upgrade. I got the new results last week and opened it right up. There was a new Alzheimer’s link with a little lock on it.\u003c/p>\n\u003cp>The lock is to keep me out until I feel ready to deal with the news. Well, I’m ready…\u003c/p>\n\u003cp>When I opened the lock, I was given information about one gene, APOE. This was pretty disappointing. In my case, I was able to guess my APOE status with the old information. \u003c/p>\n\u003cp>I understand that for people who couldn’t guess their APOE status before that these new results might be useful. But I expected more. Lots of genes all impact our risk of getting Alzheimer’s and scientists are making real progress figuring these out.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003c!--more-->\u003c/p>\n\u003cp>What I was hoping to see was a compilation of all the information out there. See, my APOE data suggests that I am at a lower risk. But what if all my other genes are of the wrong type and put me at a higher risk? Then I might be at a higher risk than I think I am.\u003c/p>\n\u003cp>And my situation is better than people who have APOE gene versions that put them at a higher risk. What if all of their other genes put them at a lower risk? Now they are worried for no reason.\u003c/p>\n\u003cp>This points to one of the big issues with genetic tests and complex genetic diseases. Right now we know a bit about some of the genes involved but we don’t yet know the whole story. \u003c/p>\n\u003cp>It is kind of like having a whiteboard with a vast, awful, Jimmy Neutronesque formula scrawled across it. This is our genetic risk for getting something like Alzheimer’s. \u003c/p>\n\u003cp>Unfortunately, a blanket of ignorance hides most of the formula from us. We can only get a glimpse of one small part of it. What we then try to do is figure out our risk from that glimpse.\u003c/p>\n\u003cp>So let’s say we manage to uncover a bit of the blanket in the corner and we see a 0.5X. Does that mean that I am half as likely to get Alzheimer’s? Hardly. We have managed to see a piece of the whole formula but the rest remains hidden.\u003c/p>\n\u003cp>My APOE status is really just a bit of the formula for my Alzheimer’s risk peeking out from under the blanket. I don’t know the rest of the formula and so don’t know the rest of the risk.\u003c/p>\n\u003cp>APOE status is a well-studied risk that we know a lot about. We have completely uncovered it on our whiteboard. Some studies are staring to reveal other parts of the board but they aren’t completely clear yet. This is probably why 23andMe left them out.\u003c/p>\n\u003cp>I decided to look at the hazy parts of my equation using good old \u003ca href=\"http://www.snpedia.com/index.php/SNPedia\">SNPedia\u003c/a>. Remember, they have lots of information about DNA variants and disease that isn’t as filtered as is 23andMe’s. \u003c/p>\n\u003cp>Here is what I found when I put my data from 23andMe through SNPedia. I have listed the SNP, what I have at the SNP (the allele), and my risk for Alzheimer’s for those that give me a higher or lower chance for Alzheimer’s. I haven’t put in the ones that have normal risk.\u003c/p>\n\u003cp>\u003cimg src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2011/05/AlzTable2.jpg\">\u003c/p>\n\u003cp>I came out very well here. I am at a much lower risk for getting Alzheimer’s when I look at these SNPs. Yay! \u003c/p>\n\u003cp>But what if I just had s4934 data? I would come out thinking I was at a higher risk when I am actually at a lower one. Lots of needless worry over nothing…\u003c/p>\n\u003cp>Now I shouldn’t get complacent, this is still only a bit of my risk for Alzheimer’s. There may be some killer SNP lurking in my DNA, ready to spring Alzheimer’s on me. Or a long list of small, not-yet-discovered SNPs that will eat away at my supposed lower risk for Alzheimer’s. We just don’t know yet.\u003c/p>\n\u003cp>And I haven’t even begun to talk about environmental impacts. We know so little about that one with Alzheimer’s that we haven’t even found the whiteboard yet!\u003c/p>\n\u003cp>\u003c/p>\n\u003cp> 37.7749295 -122.4194155\u003c/p>\n\n","blocks":[],"excerpt":"Genetic tests for complex diseases just tell you part of your genetic risk and nothing about your environmental risks.","status":"publish","parent":0,"modified":1306166662,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":24,"wordCount":774},"headData":{"title":"Uncovering Risk One Gene at a Time | KQED","description":"Genetic tests for complex diseases just tell you part of your genetic risk and nothing about your environmental risks.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Uncovering Risk One Gene at a Time","datePublished":"2011-05-23T16:04:22.000Z","dateModified":"2011-05-23T16:04:22.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"14601 http://www.kqed.org/quest/blog/2011/05/23/uncovering-risk-one-gene-at-a-time/","disqusUrl":"https://ww2.kqed.org/quest/2011/05/23/uncovering-risk-one-gene-at-a-time/","disqusTitle":"Uncovering Risk One Gene at a Time","path":"/quest/14601/uncovering-risk-one-gene-at-a-time","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cspan class=\"left\">\u003ca href=\"http://www.kqed.org/quest\">\u003cimg src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2011/05/MathFormula2.jpg\" alt=\"\">\u003c/a>\u003cem>Many genetic tests just uncover one small bit of\u003cbr>your disease risk formula.\u003cbr>Image courtesy of \u003ca href=\"http://en.wikipedia.org/wiki/File:Math_lecture_at_TKK.JPG\">Tungsten\u003c/a>\u003c/em>\u003c/span>\u003c/p>\n\u003cp>Since 23andMe is offering data on Alzheimer’s risk but only with an upgrade, I decided to get that upgrade. I got the new results last week and opened it right up. There was a new Alzheimer’s link with a little lock on it.\u003c/p>\n\u003cp>The lock is to keep me out until I feel ready to deal with the news. Well, I’m ready…\u003c/p>\n\u003cp>When I opened the lock, I was given information about one gene, APOE. This was pretty disappointing. In my case, I was able to guess my APOE status with the old information. \u003c/p>\n\u003cp>I understand that for people who couldn’t guess their APOE status before that these new results might be useful. But I expected more. Lots of genes all impact our risk of getting Alzheimer’s and scientists are making real progress figuring these out.\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!--more-->\u003c/p>\n\u003cp>What I was hoping to see was a compilation of all the information out there. See, my APOE data suggests that I am at a lower risk. But what if all my other genes are of the wrong type and put me at a higher risk? Then I might be at a higher risk than I think I am.\u003c/p>\n\u003cp>And my situation is better than people who have APOE gene versions that put them at a higher risk. What if all of their other genes put them at a lower risk? Now they are worried for no reason.\u003c/p>\n\u003cp>This points to one of the big issues with genetic tests and complex genetic diseases. Right now we know a bit about some of the genes involved but we don’t yet know the whole story. \u003c/p>\n\u003cp>It is kind of like having a whiteboard with a vast, awful, Jimmy Neutronesque formula scrawled across it. This is our genetic risk for getting something like Alzheimer’s. \u003c/p>\n\u003cp>Unfortunately, a blanket of ignorance hides most of the formula from us. We can only get a glimpse of one small part of it. What we then try to do is figure out our risk from that glimpse.\u003c/p>\n\u003cp>So let’s say we manage to uncover a bit of the blanket in the corner and we see a 0.5X. Does that mean that I am half as likely to get Alzheimer’s? Hardly. We have managed to see a piece of the whole formula but the rest remains hidden.\u003c/p>\n\u003cp>My APOE status is really just a bit of the formula for my Alzheimer’s risk peeking out from under the blanket. I don’t know the rest of the formula and so don’t know the rest of the risk.\u003c/p>\n\u003cp>APOE status is a well-studied risk that we know a lot about. We have completely uncovered it on our whiteboard. Some studies are staring to reveal other parts of the board but they aren’t completely clear yet. This is probably why 23andMe left them out.\u003c/p>\n\u003cp>I decided to look at the hazy parts of my equation using good old \u003ca href=\"http://www.snpedia.com/index.php/SNPedia\">SNPedia\u003c/a>. Remember, they have lots of information about DNA variants and disease that isn’t as filtered as is 23andMe’s. \u003c/p>\n\u003cp>Here is what I found when I put my data from 23andMe through SNPedia. I have listed the SNP, what I have at the SNP (the allele), and my risk for Alzheimer’s for those that give me a higher or lower chance for Alzheimer’s. I haven’t put in the ones that have normal risk.\u003c/p>\n\u003cp>\u003cimg src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2011/05/AlzTable2.jpg\">\u003c/p>\n\u003cp>I came out very well here. I am at a much lower risk for getting Alzheimer’s when I look at these SNPs. Yay! \u003c/p>\n\u003cp>But what if I just had s4934 data? I would come out thinking I was at a higher risk when I am actually at a lower one. Lots of needless worry over nothing…\u003c/p>\n\u003cp>Now I shouldn’t get complacent, this is still only a bit of my risk for Alzheimer’s. There may be some killer SNP lurking in my DNA, ready to spring Alzheimer’s on me. Or a long list of small, not-yet-discovered SNPs that will eat away at my supposed lower risk for Alzheimer’s. We just don’t know yet.\u003c/p>\n\u003cp>And I haven’t even begun to talk about environmental impacts. We know so little about that one with Alzheimer’s that we haven’t even found the whiteboard yet!\u003c/p>\n\u003cp>\u003c/p>\n\u003cp> 37.7749295 -122.4194155\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/quest/14601/uncovering-risk-one-gene-at-a-time","authors":["6177"],"categories":["quest_4"],"tags":["quest_43","quest_134","quest_135","quest_3458","quest_3530","quest_3545","quest_3546","quest_3552","quest_1195","quest_2436","quest_3768"],"label":"quest"},"quest_14037":{"type":"posts","id":"quest_14037","meta":{"index":"posts_1591205157","site":"quest","id":"14037","score":null,"sort":[1303749791000]},"guestAuthors":[],"slug":"better-left-unknown","title":"Better Left Unknown?","publishDate":1303749791,"format":"standard","headTitle":"QUEST | KQED Science","labelTerm":{"site":"quest"},"content":"\u003cp>\u003cspan class=\"left\">\u003ca href=\"http://www.kqed.org/quest\">\u003cimg src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2011/04/Redact2.jpg\" alt=\"\">\u003c/a>\u003cem>I might be better off NOT knowing some things about my genes.\u003c/em>\u003c/span>\u003c/p>\n\u003cp>Last \u003ca href=\"http://ww2.kqed.org/quest/2011/04/11/dna-diving-for-alzheimer%E2%80%99s/\">blog \u003c/a>I talked about how I was able to wrest information about my APOE gene from my 23andMe data. I wanted to know because of this gene’s link to late onset Alzheimer’s disease.\u003c/p>\n\u003cp>APOE comes in three versions: e2, e3, and e4. People with two e4 versions are around 15 times more likely to end up with Alzheimer’s than are people with two e3 versions. And if these e4 folks do get the disease, it tends to come at an earlier age. \u003c/p>\n\u003cp>I found out that I actually have two e2 versions which protects me somewhat from getting late onset Alzheimer’s. Good news? I guess…\u003c/p>\n\u003cp>\u003c!--more-->\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>In all of this, I didn’t ask whether this information is worth knowing. Being e2/e2 doesn’t mean I won’t get Alzheimer’s…it just means I am at a lower risk. But at least I didn’t find out I was e4/e4. Then I’d know I was more likely to get Alzheimer’s but not be able to do anything medically useful with that information. \u003c/p>\n\u003cp>Being e4/e4 would not have meant that I would for sure end up with Alzheimer’s. So it wouldn’t be like having two copies of the \u003ca href=\"http://www.ornl.gov/sci/techresources/Human_Genome/posters/chromosome/cftr.shtml\">delta-508\u003c/a> marker of the CFTR gene. In that case, I would almost certainly have developed cystic fibrosis. No, two copies of e4 would just mean that I was at a higher risk.\u003c/p>\n\u003cp>And knowing this wouldn’t be able to help me medically at all. There aren’t any good preventative measures I could take to stave off Alzheimer’s. \u003c/p>\n\u003cp>Now this isn’t always true with these kinds of increased risk genetic markers—some are definitely worth knowing. Women who have certain \u003ca href=\"http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA\">BRCA1/BRCA2\u003c/a> markers are at an increased risk for getting breast or ovarian cancer. They can choose to screen early (and often) in the hope of catching the cancer early when it is more treatable. Or, more drastically, they can choose to have their breasts and/or ovaries removed. Neither is really an option for Alzheimer’s.\u003c/p>\n\u003cp>So knowing my APOE status isn’t really that useful medically (at least not yet). I can’t do anything useful with the information other than wait and see if I end up with Alzheimer’s. Which is pretty much what I would have done without the test.\u003c/p>\n\u003cp>I’m bringing all of this up because 23andMe is now offering people their APOE information (with an upgrade to their new chip, of course). People can now find out their particular combination of e2, e3, and e4 markers*. \u003c/p>\n\u003cp>In the past, the question was whether or not direct to consumer (DTC) genetic testing companies should offer such a test. That ship has either sailed or is getting ready to leave the harbor. The test will be made available to people who really want the information.\u003c/p>\n\u003cp>So now the key question is whether knowing your APOE status is worth it. The answer to this question will be different for different people. Given this, the most important thing is for people to have the information they need to make the right choice about whether they want to know their APOE status or not.\u003c/p>\n\u003cp>One way to figure this out is with a genetic counselor but most DTC tests don’t mandate that you need to talk to one before you are tested. This means it is absolutely critical that the online information provided by DTC companies are presented in an easy to understand way that does not oversell the genetic test. The DTC companies need to be upfront in the fact that this test is not predictive and that there are no proven preventative measures that can keep Alzheimer’s at bay.\u003c/p>\n\u003cp>I’ll let you all judge how well 23andMe has done at letting people know about what you can learn from the APOE test and what you can do with that knowledge. Click \u003ca href=\"https://www.23andme.com/health/alzheimers/\">here \u003c/a>to read what they have to say.\u003c/p>\n\u003cp>* \u003cem>You have always been able to get your APOE status with a more expensive genetic test from \u003ca href=\"http://www.decodeme.com/\">deCODEme\u003c/a>.\u003c/em>\u003c/p>\n\u003cp>\u003ca href=\"http://www.thetech.org/genetics/ask.php?id=405\">Learn more about how genes and the environment work together to cause Alzheimer's.\u003c/a> \u003c/p>\n\u003cp>\u003cem>I put this video in the last blog but it probably should have gone in this one. It shows the unintended consequences of finding out you are e4/e4.\u003c/em>\u003c/p>\n\u003cp style=\"text-align: center\">\n\u003ciframe width=\"425\" height=\"349\" src=\"http://www.youtube.com/embed/oGuvzlD7Yx8\" frameborder=\"0\">\u003c/iframe>\u003c/p>\n\u003cp>\u003c/p>\n\u003cp> 37.7749295 -122.4194155\u003c/p>\n\n","blocks":[],"excerpt":"Just because we can find out about some of our genetic information, should we? Even though the results are often not very useful or even very informative, they can sometimes be a real burden.","status":"publish","parent":0,"modified":1303749791,"stats":{"hasAudio":false,"hasVideo":true,"hasChartOrMap":true,"iframeSrcs":["http://www.youtube.com/embed/oGuvzlD7Yx8"],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":21,"wordCount":777},"headData":{"title":"Better Left Unknown? | KQED","description":"Just because we can find out about some of our genetic information, should we? Even though the results are often not very useful or even very informative, they can sometimes be a real burden.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Better Left Unknown?","datePublished":"2011-04-25T16:43:11.000Z","dateModified":"2011-04-25T16:43:11.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"14037 http://www.kqed.org/quest/blog/2011/04/25/better-left-unknown/","disqusUrl":"https://ww2.kqed.org/quest/2011/04/25/better-left-unknown/","disqusTitle":"Better Left Unknown?","path":"/quest/14037/better-left-unknown","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cspan class=\"left\">\u003ca href=\"http://www.kqed.org/quest\">\u003cimg src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2011/04/Redact2.jpg\" alt=\"\">\u003c/a>\u003cem>I might be better off NOT knowing some things about my genes.\u003c/em>\u003c/span>\u003c/p>\n\u003cp>Last \u003ca href=\"http://ww2.kqed.org/quest/2011/04/11/dna-diving-for-alzheimer%E2%80%99s/\">blog \u003c/a>I talked about how I was able to wrest information about my APOE gene from my 23andMe data. I wanted to know because of this gene’s link to late onset Alzheimer’s disease.\u003c/p>\n\u003cp>APOE comes in three versions: e2, e3, and e4. People with two e4 versions are around 15 times more likely to end up with Alzheimer’s than are people with two e3 versions. And if these e4 folks do get the disease, it tends to come at an earlier age. \u003c/p>\n\u003cp>I found out that I actually have two e2 versions which protects me somewhat from getting late onset Alzheimer’s. Good news? I guess…\u003c/p>\n\u003cp>\u003c!--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>In all of this, I didn’t ask whether this information is worth knowing. Being e2/e2 doesn’t mean I won’t get Alzheimer’s…it just means I am at a lower risk. But at least I didn’t find out I was e4/e4. Then I’d know I was more likely to get Alzheimer’s but not be able to do anything medically useful with that information. \u003c/p>\n\u003cp>Being e4/e4 would not have meant that I would for sure end up with Alzheimer’s. So it wouldn’t be like having two copies of the \u003ca href=\"http://www.ornl.gov/sci/techresources/Human_Genome/posters/chromosome/cftr.shtml\">delta-508\u003c/a> marker of the CFTR gene. In that case, I would almost certainly have developed cystic fibrosis. No, two copies of e4 would just mean that I was at a higher risk.\u003c/p>\n\u003cp>And knowing this wouldn’t be able to help me medically at all. There aren’t any good preventative measures I could take to stave off Alzheimer’s. \u003c/p>\n\u003cp>Now this isn’t always true with these kinds of increased risk genetic markers—some are definitely worth knowing. Women who have certain \u003ca href=\"http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA\">BRCA1/BRCA2\u003c/a> markers are at an increased risk for getting breast or ovarian cancer. They can choose to screen early (and often) in the hope of catching the cancer early when it is more treatable. Or, more drastically, they can choose to have their breasts and/or ovaries removed. Neither is really an option for Alzheimer’s.\u003c/p>\n\u003cp>So knowing my APOE status isn’t really that useful medically (at least not yet). I can’t do anything useful with the information other than wait and see if I end up with Alzheimer’s. Which is pretty much what I would have done without the test.\u003c/p>\n\u003cp>I’m bringing all of this up because 23andMe is now offering people their APOE information (with an upgrade to their new chip, of course). People can now find out their particular combination of e2, e3, and e4 markers*. \u003c/p>\n\u003cp>In the past, the question was whether or not direct to consumer (DTC) genetic testing companies should offer such a test. That ship has either sailed or is getting ready to leave the harbor. The test will be made available to people who really want the information.\u003c/p>\n\u003cp>So now the key question is whether knowing your APOE status is worth it. The answer to this question will be different for different people. Given this, the most important thing is for people to have the information they need to make the right choice about whether they want to know their APOE status or not.\u003c/p>\n\u003cp>One way to figure this out is with a genetic counselor but most DTC tests don’t mandate that you need to talk to one before you are tested. This means it is absolutely critical that the online information provided by DTC companies are presented in an easy to understand way that does not oversell the genetic test. The DTC companies need to be upfront in the fact that this test is not predictive and that there are no proven preventative measures that can keep Alzheimer’s at bay.\u003c/p>\n\u003cp>I’ll let you all judge how well 23andMe has done at letting people know about what you can learn from the APOE test and what you can do with that knowledge. Click \u003ca href=\"https://www.23andme.com/health/alzheimers/\">here \u003c/a>to read what they have to say.\u003c/p>\n\u003cp>* \u003cem>You have always been able to get your APOE status with a more expensive genetic test from \u003ca href=\"http://www.decodeme.com/\">deCODEme\u003c/a>.\u003c/em>\u003c/p>\n\u003cp>\u003ca href=\"http://www.thetech.org/genetics/ask.php?id=405\">Learn more about how genes and the environment work together to cause Alzheimer's.\u003c/a> \u003c/p>\n\u003cp>\u003cem>I put this video in the last blog but it probably should have gone in this one. It shows the unintended consequences of finding out you are e4/e4.\u003c/em>\u003c/p>\n\u003cp style=\"text-align: center\">\n\u003ciframe width=\"425\" height=\"349\" src=\"http://www.youtube.com/embed/oGuvzlD7Yx8\" frameborder=\"0\">\u003c/iframe>\u003c/p>\n\u003cp>\u003c/p>\n\u003cp> 37.7749295 -122.4194155\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/quest/14037/better-left-unknown","authors":["6177"],"categories":["quest_4"],"tags":["quest_43","quest_134","quest_135","quest_3458","quest_377","quest_3530","quest_3553","quest_3554","quest_3555","quest_3587","quest_1195","quest_1197","quest_3652","quest_2161"],"featImg":"quest_13535","label":"quest"},"quest_13504":{"type":"posts","id":"quest_13504","meta":{"index":"posts_1591205157","site":"quest","id":"13504","score":null,"sort":[1302537708000]},"guestAuthors":[],"slug":"dna-diving-for-alzheimer%e2%80%99s","title":"DNA Diving for Alzheimer’s","publishDate":1302537708,"format":"standard","headTitle":"DNA Diving for Alzheimer’s | KQED","labelTerm":{"site":"quest"},"content":"\u003ctable align=\"left\">\n\u003ctbody>\n\u003ctr>\n\u003ctd>\u003cimg decoding=\"async\" src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2011/04/AlzPetScan22.gif\" alt=\"\">\u003cbr>\n\u003cspan style=\"color: #999999\">My 23andMe test tells me I am less likely to end up\u003cbr>\nwith the brain on the left.\u003cbr>\nImage courtesy of \u003ca href=\"http://commons.wikimedia.org/wiki/File:PiB_PET_Images_AD.jpg\">Klunkwe\u003c/a>.\u003c/span>\u003c/td>\n\u003c/tr>\n\u003c/tbody>\n\u003c/table>\n\u003cp>I was having lunch with a colleague the other day and we got to talking about genetic testing (yes, we are that geeky). I told him about how my 23andMe test had missed my being prediabetic. This says a lot about what 23andMe’s test can tell me about my risk for diabetes. Not much.\u003c/p>\n\u003cp>Now as I have \u003ca href=\"http://ww2.kqed.org/quest/2009/10/12/do-these-genes-make-me-look-diabetic/\">said before\u003c/a>, the fact that 23andMe can’t tell me that I’m likely to become diabetic from their DNA test isn’t their fault (other than, perhaps, some overselling on their part). Diabetes research just isn’t far enough along to be able to accurately predict whether someone will get diabetes or not. Or to make any really meaningful prediction about diabetes at all.\u003c/p>\n\u003cp>\u003c!--more-->\u003c/p>\n\u003cp>We then got to talking about Alzheimer’s. Turns out his family tree is littered with Alzheimer’s on both his mother’s and father’s side. He ran into a similar problem–23andMe doesn’t report anything for Alzheimer’s.\u003c/p>\n\u003cp>But here the situation is a bit different than for diabetes. There are a couple of DNA markers that can tell us a lot about our future risk for late onset Alzheimer’s. It just so happens that 23andMe doesn’t report on them.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>These markers deal with the APOE gene. This gene comes in three common versions: e2, e3, and e4. People with two copies of the e4 version are 15 times more likely to develop Alzheimer’s and if they do end up with the disease, it tends to come earlier. (One copy of e4 increases your risk about 3 times.)\u003c/p>\n\u003cp>With a little help from my colleague, I decided to dig a bit deeper into Alzheimer’s and see what I could figure out from what 23andMe did provide. Turns out I can figure out a whole lot about my APOE status. And that I can help other people figure out more from their results too.\u003c/p>\n\u003cp>The two markers (also called \u003ca href=\"http://www.ncbi.nlm.nih.gov/About/primer/snps.html\">SNP\u003c/a>s) that deal with APOE and Alzheimer’s are rs429358 and rs7412. Here, according to \u003ca href=\"http://www.snpedia.com/index.php/ApoE\">SNPedia\u003c/a>, are the combinations of these markers that tell you your APOE status:\u003c/p>\n\u003cp style=\"text-align: center\">\u003cimg decoding=\"async\" class=\"alignnone\" src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2011/04/APOEtable2.jpg\" alt=\"\">\u003c/p>\n\u003cp>To my surprise, 23andMe gives information on one of them, rs7412. Even though this isn’t usually enough to tell whether you have the dreaded e4 version or not, in my case it was. I almost certainly do not have any versions of e4 (yay!).\u003c/p>\n\u003cp>See, my results at rs7412 are TT*. If I am interpreting these results correctly, this means I almost certainly have two copies of the e2 version of the APOE gene. In terms of my Alzheimer’s risk this is great news as being e2/e2 actually lowers your risk for getting the disease. (There is a chance I could be e1 but this doesn’t seem to be a very common version at all.)\u003c/p>\n\u003cp>Of course this doesn’t mean I won’t get Alzheimer’s…I still might. After all, the \u003ca href=\"http://www.alz.org/alzheimers_disease_causes_risk_factors.asp#familyhistory\">risk \u003c/a>for someone over 85 getting Alzheimer’s is almost 50%. Even though this number lumps e4 and e2 folks together, e2 people do not have a 0% risk for Alzheimer’s nor do e4 people have a 100% chance. People with e4 are just more likely to have Alzheimer’s than e2 people.\u003c/p>\n\u003cp>It might help to think about getting Alzheimer’s like drawing an inside straight in poker. Everyone might do it but people who are playing with wildcards are more likely to get it. These are the e4 folks. But it isn’t a for sure thing…you still may not draw the straight even with deuces wild.\u003c/p>\n\u003cp>Same thing with not having e4. Now I am less likely to draw that inside straight because there are no wild cards but it can still happen.\u003c/p>\n\u003cp>Because I was TT at rs7412, my case was pretty easy to figure out. Next blog I’ll try to help people out who are TC or CC at rs7412.\u003c/p>\n\u003cp>*\u003cem>Remember, we have two copies of each of our genes. So I have a T at rs7412 in one copy and a T at rs7412 in my other copy.\u003c/em>\u003c/p>\n\u003cp>\u003cem>A video showing why knowing your APOE status isn’t necessarily a good thing.\u003c/em>\u003c/p>\n\u003cp style=\"text-align: center\">\n\u003ciframe loading=\"lazy\" width=\"425\" height=\"349\" src=\"http://www.youtube.com/embed/oGuvzlD7Yx8\" frameborder=\"0\">\u003c/iframe>\u003c/p>\n\u003cp>Learn more about current Bay Area genetic research from \u003ca href=\"http://www.kqed.org/a/forum/R201104050900\">KQED’s Forum. \u003c/a>\u003c/p>\n\u003cp>\u003c/p>\n\u003cp> 37.7749295 -122.4194155\u003c/p>\n\n","blocks":[],"excerpt":"I was able to figure out my APOE status and so one of my key risk factors for developing late onset Alzheimer's from my 23andMe test even though 23andMe doesn't officially report any results for Alzheimer's.","status":"publish","parent":0,"modified":1684974330,"stats":{"hasAudio":false,"hasVideo":true,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":20,"wordCount":777},"headData":{"title":"DNA Diving for Alzheimer’s | KQED","description":"I was able to figure out my APOE status and so one of my key risk factors for developing late onset Alzheimer's from my 23andMe test even though 23andMe doesn't officially report any results for Alzheimer's.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"DNA Diving for Alzheimer’s","datePublished":"2011-04-11T16:01:48.000Z","dateModified":"2023-05-25T00:25:30.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"templateType":"standard","featuredImageType":"standard","excludeFromSiteSearch":"Include","articleAge":"0","path":"/quest/13504/dna-diving-for-alzheimer%e2%80%99s","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003ctable align=\"left\">\n\u003ctbody>\n\u003ctr>\n\u003ctd>\u003cimg decoding=\"async\" src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2011/04/AlzPetScan22.gif\" alt=\"\">\u003cbr>\n\u003cspan style=\"color: #999999\">My 23andMe test tells me I am less likely to end up\u003cbr>\nwith the brain on the left.\u003cbr>\nImage courtesy of \u003ca href=\"http://commons.wikimedia.org/wiki/File:PiB_PET_Images_AD.jpg\">Klunkwe\u003c/a>.\u003c/span>\u003c/td>\n\u003c/tr>\n\u003c/tbody>\n\u003c/table>\n\u003cp>I was having lunch with a colleague the other day and we got to talking about genetic testing (yes, we are that geeky). I told him about how my 23andMe test had missed my being prediabetic. This says a lot about what 23andMe’s test can tell me about my risk for diabetes. Not much.\u003c/p>\n\u003cp>Now as I have \u003ca href=\"http://ww2.kqed.org/quest/2009/10/12/do-these-genes-make-me-look-diabetic/\">said before\u003c/a>, the fact that 23andMe can’t tell me that I’m likely to become diabetic from their DNA test isn’t their fault (other than, perhaps, some overselling on their part). Diabetes research just isn’t far enough along to be able to accurately predict whether someone will get diabetes or not. Or to make any really meaningful prediction about diabetes at all.\u003c/p>\n\u003cp>\u003c!--more-->\u003c/p>\n\u003cp>We then got to talking about Alzheimer’s. Turns out his family tree is littered with Alzheimer’s on both his mother’s and father’s side. He ran into a similar problem–23andMe doesn’t report anything for Alzheimer’s.\u003c/p>\n\u003cp>But here the situation is a bit different than for diabetes. There are a couple of DNA markers that can tell us a lot about our future risk for late onset Alzheimer’s. It just so happens that 23andMe doesn’t report on them.\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>These markers deal with the APOE gene. This gene comes in three common versions: e2, e3, and e4. People with two copies of the e4 version are 15 times more likely to develop Alzheimer’s and if they do end up with the disease, it tends to come earlier. (One copy of e4 increases your risk about 3 times.)\u003c/p>\n\u003cp>With a little help from my colleague, I decided to dig a bit deeper into Alzheimer’s and see what I could figure out from what 23andMe did provide. Turns out I can figure out a whole lot about my APOE status. And that I can help other people figure out more from their results too.\u003c/p>\n\u003cp>The two markers (also called \u003ca href=\"http://www.ncbi.nlm.nih.gov/About/primer/snps.html\">SNP\u003c/a>s) that deal with APOE and Alzheimer’s are rs429358 and rs7412. Here, according to \u003ca href=\"http://www.snpedia.com/index.php/ApoE\">SNPedia\u003c/a>, are the combinations of these markers that tell you your APOE status:\u003c/p>\n\u003cp style=\"text-align: center\">\u003cimg decoding=\"async\" class=\"alignnone\" src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2011/04/APOEtable2.jpg\" alt=\"\">\u003c/p>\n\u003cp>To my surprise, 23andMe gives information on one of them, rs7412. Even though this isn’t usually enough to tell whether you have the dreaded e4 version or not, in my case it was. I almost certainly do not have any versions of e4 (yay!).\u003c/p>\n\u003cp>See, my results at rs7412 are TT*. If I am interpreting these results correctly, this means I almost certainly have two copies of the e2 version of the APOE gene. In terms of my Alzheimer’s risk this is great news as being e2/e2 actually lowers your risk for getting the disease. (There is a chance I could be e1 but this doesn’t seem to be a very common version at all.)\u003c/p>\n\u003cp>Of course this doesn’t mean I won’t get Alzheimer’s…I still might. After all, the \u003ca href=\"http://www.alz.org/alzheimers_disease_causes_risk_factors.asp#familyhistory\">risk \u003c/a>for someone over 85 getting Alzheimer’s is almost 50%. Even though this number lumps e4 and e2 folks together, e2 people do not have a 0% risk for Alzheimer’s nor do e4 people have a 100% chance. People with e4 are just more likely to have Alzheimer’s than e2 people.\u003c/p>\n\u003cp>It might help to think about getting Alzheimer’s like drawing an inside straight in poker. Everyone might do it but people who are playing with wildcards are more likely to get it. These are the e4 folks. But it isn’t a for sure thing…you still may not draw the straight even with deuces wild.\u003c/p>\n\u003cp>Same thing with not having e4. Now I am less likely to draw that inside straight because there are no wild cards but it can still happen.\u003c/p>\n\u003cp>Because I was TT at rs7412, my case was pretty easy to figure out. Next blog I’ll try to help people out who are TC or CC at rs7412.\u003c/p>\n\u003cp>*\u003cem>Remember, we have two copies of each of our genes. So I have a T at rs7412 in one copy and a T at rs7412 in my other copy.\u003c/em>\u003c/p>\n\u003cp>\u003cem>A video showing why knowing your APOE status isn’t necessarily a good thing.\u003c/em>\u003c/p>\n\u003cp style=\"text-align: center\">\n\u003ciframe loading=\"lazy\" width=\"425\" height=\"349\" src=\"http://www.youtube.com/embed/oGuvzlD7Yx8\" frameborder=\"0\">\u003c/iframe>\u003c/p>\n\u003cp>Learn more about current Bay Area genetic research from \u003ca href=\"http://www.kqed.org/a/forum/R201104050900\">KQED’s Forum. \u003c/a>\u003c/p>\n\u003cp>\u003c/p>\n\u003cp> 37.7749295 -122.4194155\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/quest/13504/dna-diving-for-alzheimer%e2%80%99s","authors":["6177"],"categories":["quest_4"],"tags":["quest_43","quest_134","quest_135","quest_3457","quest_3458","quest_377","quest_3530","quest_3553","quest_3554","quest_3555","quest_1195","quest_1197","quest_3652","quest_2161"],"featImg":"quest_13535","label":"quest"}},"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 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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