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Should I or Shouldn't I? Wrestling with Giving Genetic Tests as Gifts
Uncovering Risk One Gene at a Time
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the gift of a genetic test can be a tricky 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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_48104":{"type":"posts","id":"quest_48104","meta":{"index":"posts_1591205157","site":"quest","id":"48104","score":null,"sort":[1356969608000]},"guestAuthors":[],"slug":"should-i-or-shouldnt-i-wrestling-with-giving-genetic-tests-as-gifts","title":"Should I or Shouldn't I? Wrestling with Giving Genetic Tests as Gifts","publishDate":1356969608,"format":"aside","headTitle":"QUEST | KQED Science","labelTerm":{"site":"quest"},"content":"\u003cfigure id=\"attachment_48105\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/quest/2012/12/31/should-i-or-shouldnt-i-wrestling-with-giving-genetic-tests-as-gifts/gift/\" rel=\"attachment wp-att-48105\">\u003cimg src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2012/12/Gift.jpg\" alt=\"\" title=\"Gift\" width=\"640\" height=\"369\" class=\"size-full wp-image-48105\" srcset=\"https://ww2.kqed.org/app/uploads/sites/39/2012/12/Gift.jpg 640w, https://ww2.kqed.org/app/uploads/sites/39/2012/12/Gift-400x231.jpg 400w\" sizes=\"(max-width: 640px) 100vw, 640px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Giving the gift of a genetic test can be a tricky business.\u003c/figcaption>\u003c/figure>\n\u003cp>When \u003ca href=\"https://www.23andme.com/\">23andMe\u003c/a> offered their DNA test for just $99, I started to think about giving it for Christmas presents. It was an easy decision to send one to my dad (although I’ll be curious to see if he’ll do it). What was much trickier was deciding whether to give one to my 15 year old son.\u003c/p>\n\u003cp>There are a number of reasons I wanted to give away this test to my relatives. The first is that I want to see how the DNA got passed down from my dad to me. And how it got passed from me to my son.\u003c/p>\n\u003cp>You might recall that we all have 23 pairs of chromosomes. We get one of each pair from our moms and one from our dads.\u003c/p>\n\u003cp>When we pass this DNA down to our kids, the DNA in each pair goes through a process called \u003ca href=\"http://genetics.thetech.org/ask/ask435\">recombination\u003c/a>. This is where DNA is swapped between the two chromosomes in a pair. The end result is that the chromosome 1 that I got from my dad is a mix of his two chromosome 1’s. The same is true for the chromosome 2 that I got all the way through chromosome 22. (The Y I got \u003ca href=\"http://genetics.thetech.org/ask/ask450\">passed pretty much unchanged\u003c/a>.) \u003c/p>\n\u003cp>It would be so cool to see this in action with my own DNA. Seeing a concrete example of something that has largely been theoretical up to this point somehow makes it more real. Especially with my own DNA.\u003c/p>\n\u003cfigure id=\"attachment_48110\" class=\"wp-caption alignright\" style=\"max-width: 250px\">\u003ca href=\"http://ww2.kqed.org/quest/2012/12/31/should-i-or-shouldnt-i-wrestling-with-giving-genetic-tests-as-gifts/africandna2/\" rel=\"attachment wp-att-48110\">\u003cimg src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2012/12/AfricanDNA2.jpg\" alt=\"\" title=\"AfricanDNA2\" width=\"250\" height=\"313\" class=\"size-full wp-image-48110\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Look ma, I'm a little bit African! The pink at the end of one of my chromosome 11's indicates an African ancestry.\u003c/figcaption>\u003c/figure>\n\u003cp>At least this was the case when I got the whole family tested for the gene responsible for most cases of red hair, MC1R. It was so satisfying to see that my wife and I were \u003ca href=\"http://genetics.thetech.org/ask/ask44\">carriers for red hair\u003c/a>, that we each passed a red version of MC1R to our red haired son, that our older son got one copy and so was a carrier like us and that our daughter didn’t get a red MC1R gene. Even though I knew my wife and I were carriers and out red haired son had two red copies, it seemed more real once I saw the genetic results.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The test can also tell us something about our ancestry. For example, it was cool to see that the tip of one of my chromosome 11’s actually comes from an African ancestor. I am 0.1% African. How cool is that?\u003c/p>\n\u003cp>Getting my dad tested would tell me if I got that from him. Undoubtedly I did as his family is from Arkansas and my mother’s is from Berlin, Germany but still it would be nice to confirm. My dad’s DNA could also tell us whether an old family legend about us being related to the outlaw Sam Starr is true.\u003c/p>\n\u003cp>See Sam Starr was half Native American which would mean we would have some Native American DNA too. As I talked about in a couple of previous blogs \u003ca href=\"http://ww2.kqed.org/quest/2009/09/14/genetic-tests-when-no-means-maybe-part-1/\">here \u003c/a>and \u003ca href=\"http://ww2.kqed.org/quest/2009/09/28/genetic-tests-when-no-means-maybe-part-2/\">here\u003c/a>, I couldn’t see Native American in my own DNA. One reason for this might be that I am one generation too far for the test to be able to see that DNA in mine. Maybe since my dad is one generation closer, we could see the Native American DNA in his.\u003c/p>\n\u003cp>OK, that was the fun stuff. Now on to why I might be hesitant to get my son tested. It has to do with what our DNA can and can’t tell us about our future health risks. And how these findings are packaged.\u003c/p>\n\u003cp>One of the things you can quickly learn is whether you are a carrier for some deadly genetic disease like cystic fibrosis. They don’t test for every possible variant so a negative result may give a false sense of security. Still, it would be good to know about the common ones, right? I guess maybe…\u003c/p>\n\u003cp>This kind of knowledge is important for my son to know once he’s married but does he need to know about his genetic burden now? Is he ready for it?\u003c/p>\n\u003cfigure id=\"attachment_48121\" class=\"wp-caption alignright\" style=\"max-width: 182px\">\u003ca href=\"http://ww2.kqed.org/quest/2012/12/31/should-i-or-shouldnt-i-wrestling-with-giving-genetic-tests-as-gifts/alzrisk/\" rel=\"attachment wp-att-48121\">\u003cimg src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2012/12/AlzRisk.jpg\" alt=\"\" title=\"AlzRisk\" width=\"182\" height=\"312\" class=\"size-full wp-image-48121\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Good news for me and my kids. I am at a lower risk for Alzheimer's and I will for sure pass at least some of that lowered risk to my kids. \u003c/figcaption>\u003c/figure>\n\u003cp>And what about straight up genetic diseases? I found out I am a carrier for something called hemochromatosis. If my wife is one too then my son has a chance of getting the disease although even if he got the \"bad\" versions from my wife and me he still only has a chance at the disease. (Hemochromatosis is incompletely penetrant.) \u003c/p>\n\u003cp>At least with this one there is an easy remedy if you end up with it. You just have to give blood often and you are OK. But what about diseases you can’t do anything about?\u003c/p>\n\u003cp>Imagine he finds he has two copies of the APOE4 version of the APOE gene. These people are much more likely to end up with Alzheimer’s later in life. Should a 15 year old be subjected to that worry for the rest of his life?\u003c/p>\n\u003cp>Now that one is only theoretical. Because \u003ca href=\"http://ww2.kqed.org/quest/2011/04/25/better-left-unknown/\">I have two copies of the “good” version\u003c/a> of APOE, APOE2, I know at worst he’d have a good and a bad version (APOE3 is the neutral version). Of course then my wife would know she probably carries at least one APOE4 and now she can start to worry. And maybe feel bad that she passed it on to her son…\u003c/p>\n\u003cp>The list of issues like this goes on and on. I haven’t even dealt with things like DNA differences that led to a 1.5 fold increase in prostate cancer or macular degeneration or who knows what else. Is he ready to get that kind of information and, more importantly, to understand the limitations of the information? \u003c/p>\n\u003cp>For example, just because he has a marker that more people who ended up with prostate cancer had, that doesn’t mean that the marker means the same thing in him. His genetics are his own and everyone will have a different risk for these sorts of multi-gene traits. And even if he is twice as likely to get brain cancer, does he know what those numbers mean? Or will his lack of understanding make him depressed because he thinks he will most likely end up with brain cancer? Yikes.\u003c/p>\n\u003cp>To test out how ready he was, I decided to share some of my results with him while my eleven year old daughter listened in. First I showed them the ancestry and traits like lactose intolerance. They thought these were very cool (and they were right). I also showed them how my DNA showed that my blood type probably was A+ and that I was a carrier for O and Rh negative blood type. We got into a nice discussion about what that means for them. Neat.\u003c/p>\n\u003cp>Then I moved onto the disease section. This is where things started to get ugly.\u003c/p>\n\u003cfigure id=\"attachment_48126\" class=\"wp-caption alignright\" style=\"max-width: 200px\">\u003ca href=\"http://ww2.kqed.org/quest/2012/12/31/should-i-or-shouldnt-i-wrestling-with-giving-genetic-tests-as-gifts/decriskconf/\" rel=\"attachment wp-att-48126\">\u003cimg src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2012/12/DecRiskConf.jpg\" alt=\"\" title=\"DecRiskConf\" width=\"200\" height=\"225\" class=\"size-full wp-image-48126\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">What does it all mean?\u003c/figcaption>\u003c/figure>\n\u003cp>I learned pretty quickly that my daughter did not have the right personality for these sorts of tests (at least not yet). She focused in on the various diseases, learning all the ways I could one day die and started to get very worried. I tried to use my understanding of genetics to tell her that these are just risks, they aren’t a for sure thing but I was getting nowhere. She tends to worry a lot and this simply gave her more to worry about. Hopefully she will forget about this and move on.\u003c/p>\n\u003cp>My son was a different matter. He was very interested in things without worrying too much but he was taking some of the health things too literally. For example, my results showed a significantly increased risk for late age macular degeneration (a nasty eye problem). Scary.\u003c/p>\n\u003cp>Except that again, this is the average risk of lots of people with varying genes who share this marker. My own risk is my own and is dependent on lots of other genes (and the environment!) besides this one. So basically I take these results with a grain of salt, waiting for more data to see if it is meaningful or not. \u003c/p>\n\u003cp>But he homed in on these results and decided they were set in stone. He saw a bunch of yellow stars that indicated that 23andMe was very confident in this result and so assumed that that meant they were very confident that I had the chance for this disease they quoted. \u003c/p>\n\u003cp>I explained that this is not the case. 23andMe has a great deal of confidence in the study itself but not necessarily in its predictions as they related specifically to me. \u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>In the end I didn’t get my son the 23andMe test. I wish they offered some way to just look at some of the data and not all of it at once. Then I might have given this as a gift to my son and maybe even my daughter.\u003c/p>\n\n","blocks":[],"excerpt":"When 23andMe offered their DNA test for just $99, I started to think about giving it for Christmas presents.","status":"publish","parent":0,"modified":1360964710,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":28,"wordCount":1571},"headData":{"title":"Should I or Shouldn't I? Wrestling with Giving Genetic Tests as Gifts | KQED","description":"When 23andMe offered their DNA test for just $99, I started to think about giving it for Christmas presents.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Should I or Shouldn't I? Wrestling with Giving Genetic Tests as Gifts","datePublished":"2012-12-31T16:00:08.000Z","dateModified":"2013-02-15T21:45:10.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"48104 http://science.kqed.org/quest/?p=48104","disqusUrl":"https://ww2.kqed.org/quest/2012/12/31/should-i-or-shouldnt-i-wrestling-with-giving-genetic-tests-as-gifts/","disqusTitle":"Should I or Shouldn't I? Wrestling with Giving Genetic Tests as Gifts","path":"/quest/48104/should-i-or-shouldnt-i-wrestling-with-giving-genetic-tests-as-gifts","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cfigure id=\"attachment_48105\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/quest/2012/12/31/should-i-or-shouldnt-i-wrestling-with-giving-genetic-tests-as-gifts/gift/\" rel=\"attachment wp-att-48105\">\u003cimg src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2012/12/Gift.jpg\" alt=\"\" title=\"Gift\" width=\"640\" height=\"369\" class=\"size-full wp-image-48105\" srcset=\"https://ww2.kqed.org/app/uploads/sites/39/2012/12/Gift.jpg 640w, https://ww2.kqed.org/app/uploads/sites/39/2012/12/Gift-400x231.jpg 400w\" sizes=\"(max-width: 640px) 100vw, 640px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Giving the gift of a genetic test can be a tricky business.\u003c/figcaption>\u003c/figure>\n\u003cp>When \u003ca href=\"https://www.23andme.com/\">23andMe\u003c/a> offered their DNA test for just $99, I started to think about giving it for Christmas presents. It was an easy decision to send one to my dad (although I’ll be curious to see if he’ll do it). What was much trickier was deciding whether to give one to my 15 year old son.\u003c/p>\n\u003cp>There are a number of reasons I wanted to give away this test to my relatives. The first is that I want to see how the DNA got passed down from my dad to me. And how it got passed from me to my son.\u003c/p>\n\u003cp>You might recall that we all have 23 pairs of chromosomes. We get one of each pair from our moms and one from our dads.\u003c/p>\n\u003cp>When we pass this DNA down to our kids, the DNA in each pair goes through a process called \u003ca href=\"http://genetics.thetech.org/ask/ask435\">recombination\u003c/a>. This is where DNA is swapped between the two chromosomes in a pair. The end result is that the chromosome 1 that I got from my dad is a mix of his two chromosome 1’s. The same is true for the chromosome 2 that I got all the way through chromosome 22. (The Y I got \u003ca href=\"http://genetics.thetech.org/ask/ask450\">passed pretty much unchanged\u003c/a>.) \u003c/p>\n\u003cp>It would be so cool to see this in action with my own DNA. Seeing a concrete example of something that has largely been theoretical up to this point somehow makes it more real. Especially with my own DNA.\u003c/p>\n\u003cfigure id=\"attachment_48110\" class=\"wp-caption alignright\" style=\"max-width: 250px\">\u003ca href=\"http://ww2.kqed.org/quest/2012/12/31/should-i-or-shouldnt-i-wrestling-with-giving-genetic-tests-as-gifts/africandna2/\" rel=\"attachment wp-att-48110\">\u003cimg src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2012/12/AfricanDNA2.jpg\" alt=\"\" title=\"AfricanDNA2\" width=\"250\" height=\"313\" class=\"size-full wp-image-48110\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Look ma, I'm a little bit African! The pink at the end of one of my chromosome 11's indicates an African ancestry.\u003c/figcaption>\u003c/figure>\n\u003cp>At least this was the case when I got the whole family tested for the gene responsible for most cases of red hair, MC1R. It was so satisfying to see that my wife and I were \u003ca href=\"http://genetics.thetech.org/ask/ask44\">carriers for red hair\u003c/a>, that we each passed a red version of MC1R to our red haired son, that our older son got one copy and so was a carrier like us and that our daughter didn’t get a red MC1R gene. Even though I knew my wife and I were carriers and out red haired son had two red copies, it seemed more real once I saw the genetic results.\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 test can also tell us something about our ancestry. For example, it was cool to see that the tip of one of my chromosome 11’s actually comes from an African ancestor. I am 0.1% African. How cool is that?\u003c/p>\n\u003cp>Getting my dad tested would tell me if I got that from him. Undoubtedly I did as his family is from Arkansas and my mother’s is from Berlin, Germany but still it would be nice to confirm. My dad’s DNA could also tell us whether an old family legend about us being related to the outlaw Sam Starr is true.\u003c/p>\n\u003cp>See Sam Starr was half Native American which would mean we would have some Native American DNA too. As I talked about in a couple of previous blogs \u003ca href=\"http://ww2.kqed.org/quest/2009/09/14/genetic-tests-when-no-means-maybe-part-1/\">here \u003c/a>and \u003ca href=\"http://ww2.kqed.org/quest/2009/09/28/genetic-tests-when-no-means-maybe-part-2/\">here\u003c/a>, I couldn’t see Native American in my own DNA. One reason for this might be that I am one generation too far for the test to be able to see that DNA in mine. Maybe since my dad is one generation closer, we could see the Native American DNA in his.\u003c/p>\n\u003cp>OK, that was the fun stuff. Now on to why I might be hesitant to get my son tested. It has to do with what our DNA can and can’t tell us about our future health risks. And how these findings are packaged.\u003c/p>\n\u003cp>One of the things you can quickly learn is whether you are a carrier for some deadly genetic disease like cystic fibrosis. They don’t test for every possible variant so a negative result may give a false sense of security. Still, it would be good to know about the common ones, right? I guess maybe…\u003c/p>\n\u003cp>This kind of knowledge is important for my son to know once he’s married but does he need to know about his genetic burden now? Is he ready for it?\u003c/p>\n\u003cfigure id=\"attachment_48121\" class=\"wp-caption alignright\" style=\"max-width: 182px\">\u003ca href=\"http://ww2.kqed.org/quest/2012/12/31/should-i-or-shouldnt-i-wrestling-with-giving-genetic-tests-as-gifts/alzrisk/\" rel=\"attachment wp-att-48121\">\u003cimg src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2012/12/AlzRisk.jpg\" alt=\"\" title=\"AlzRisk\" width=\"182\" height=\"312\" class=\"size-full wp-image-48121\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Good news for me and my kids. I am at a lower risk for Alzheimer's and I will for sure pass at least some of that lowered risk to my kids. \u003c/figcaption>\u003c/figure>\n\u003cp>And what about straight up genetic diseases? I found out I am a carrier for something called hemochromatosis. If my wife is one too then my son has a chance of getting the disease although even if he got the \"bad\" versions from my wife and me he still only has a chance at the disease. (Hemochromatosis is incompletely penetrant.) \u003c/p>\n\u003cp>At least with this one there is an easy remedy if you end up with it. You just have to give blood often and you are OK. But what about diseases you can’t do anything about?\u003c/p>\n\u003cp>Imagine he finds he has two copies of the APOE4 version of the APOE gene. These people are much more likely to end up with Alzheimer’s later in life. Should a 15 year old be subjected to that worry for the rest of his life?\u003c/p>\n\u003cp>Now that one is only theoretical. Because \u003ca href=\"http://ww2.kqed.org/quest/2011/04/25/better-left-unknown/\">I have two copies of the “good” version\u003c/a> of APOE, APOE2, I know at worst he’d have a good and a bad version (APOE3 is the neutral version). Of course then my wife would know she probably carries at least one APOE4 and now she can start to worry. And maybe feel bad that she passed it on to her son…\u003c/p>\n\u003cp>The list of issues like this goes on and on. I haven’t even dealt with things like DNA differences that led to a 1.5 fold increase in prostate cancer or macular degeneration or who knows what else. Is he ready to get that kind of information and, more importantly, to understand the limitations of the information? \u003c/p>\n\u003cp>For example, just because he has a marker that more people who ended up with prostate cancer had, that doesn’t mean that the marker means the same thing in him. His genetics are his own and everyone will have a different risk for these sorts of multi-gene traits. And even if he is twice as likely to get brain cancer, does he know what those numbers mean? Or will his lack of understanding make him depressed because he thinks he will most likely end up with brain cancer? Yikes.\u003c/p>\n\u003cp>To test out how ready he was, I decided to share some of my results with him while my eleven year old daughter listened in. First I showed them the ancestry and traits like lactose intolerance. They thought these were very cool (and they were right). I also showed them how my DNA showed that my blood type probably was A+ and that I was a carrier for O and Rh negative blood type. We got into a nice discussion about what that means for them. Neat.\u003c/p>\n\u003cp>Then I moved onto the disease section. This is where things started to get ugly.\u003c/p>\n\u003cfigure id=\"attachment_48126\" class=\"wp-caption alignright\" style=\"max-width: 200px\">\u003ca href=\"http://ww2.kqed.org/quest/2012/12/31/should-i-or-shouldnt-i-wrestling-with-giving-genetic-tests-as-gifts/decriskconf/\" rel=\"attachment wp-att-48126\">\u003cimg src=\"http://ww2.kqed.org/quest/wp-content/uploads/sites/39/2012/12/DecRiskConf.jpg\" alt=\"\" title=\"DecRiskConf\" width=\"200\" height=\"225\" class=\"size-full wp-image-48126\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">What does it all mean?\u003c/figcaption>\u003c/figure>\n\u003cp>I learned pretty quickly that my daughter did not have the right personality for these sorts of tests (at least not yet). She focused in on the various diseases, learning all the ways I could one day die and started to get very worried. I tried to use my understanding of genetics to tell her that these are just risks, they aren’t a for sure thing but I was getting nowhere. She tends to worry a lot and this simply gave her more to worry about. Hopefully she will forget about this and move on.\u003c/p>\n\u003cp>My son was a different matter. He was very interested in things without worrying too much but he was taking some of the health things too literally. For example, my results showed a significantly increased risk for late age macular degeneration (a nasty eye problem). Scary.\u003c/p>\n\u003cp>Except that again, this is the average risk of lots of people with varying genes who share this marker. My own risk is my own and is dependent on lots of other genes (and the environment!) besides this one. So basically I take these results with a grain of salt, waiting for more data to see if it is meaningful or not. \u003c/p>\n\u003cp>But he homed in on these results and decided they were set in stone. He saw a bunch of yellow stars that indicated that 23andMe was very confident in this result and so assumed that that meant they were very confident that I had the chance for this disease they quoted. \u003c/p>\n\u003cp>I explained that this is not the case. 23andMe has a great deal of confidence in the study itself but not necessarily in its predictions as they related specifically to me. \u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>In the end I didn’t get my son the 23andMe test. I wish they offered some way to just look at some of the data and not all of it at once. Then I might have given this as a gift to my son and maybe even my daughter.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/quest/48104/should-i-or-shouldnt-i-wrestling-with-giving-genetic-tests-as-gifts","authors":["6177"],"categories":["quest_4","quest_12"],"tags":["quest_159","quest_11660","quest_3545","quest_11183","quest_11658","quest_13202","quest_3319","quest_11659"],"featImg":"quest_48105","label":"quest"},"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"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. Possible paints an optimistic portrait of the world we can create through science, policy, business, art and our shared humanity. It asks: What if everything goes right for once? How can we get there? Each episode also includes a short fiction story generated by advanced AI GPT-4, serving as a thought-provoking springboard to speculate how humanity could leverage technology for good.","airtime":"SUN 2pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Possible-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.possible.fm/","meta":{"site":"news","source":"Possible"},"link":"/radio/program/possible","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/possible/id1677184070","spotify":"https://open.spotify.com/show/730YpdUSNlMyPQwNnyjp4k"}},"1a":{"id":"1a","title":"1A","info":"1A is home to the national conversation. 1A brings on great guests and frames the best debate in ways that make you think, share and engage.","airtime":"MON-THU 11pm-12am","imageSrc":"https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/1a.jpg","officialWebsiteLink":"https://the1a.org/","meta":{"site":"news","source":"npr"},"link":"/radio/program/1a","subscribe":{"npr":"https://rpb3r.app.goo.gl/RBrW","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=1188724250&at=11l79Y&ct=nprdirectory","tuneIn":"https://tunein.com/radio/1A-p947376/","rss":"https://feeds.npr.org/510316/podcast.xml"}},"all-things-considered":{"id":"all-things-considered","title":"All Things Considered","info":"Every weekday, \u003cem>All Things Considered\u003c/em> hosts Robert Siegel, Audie Cornish, Ari Shapiro, and Kelly McEvers present the program's trademark mix of news, interviews, commentaries, reviews, and offbeat features. 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You ask the questions. You decide what Bay Curious investigates. 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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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On Our Watch brings listeners into the rooms where officers are questioned and witnesses are interrogated to find out who this system is really protecting. Is it the officers, or the public they've sworn to serve?","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/On-Our-Watch-Podcast-Tile-703x703-1.jpg","imageAlt":"On Our Watch from NPR and KQED","officialWebsiteLink":"/podcasts/onourwatch","meta":{"site":"news","source":"kqed","order":"1"},"link":"/podcasts/onourwatch","subscribe":{"apple":"https://podcasts.apple.com/podcast/id1567098962","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5ucHIub3JnLzUxMDM2MC9wb2RjYXN0LnhtbD9zYz1nb29nbGVwb2RjYXN0cw","npr":"https://rpb3r.app.goo.gl/onourwatch","spotify":"https://open.spotify.com/show/0OLWoyizopu6tY1XiuX70x","tuneIn":"https://tunein.com/radio/On-Our-Watch-p1436229/","stitcher":"https://www.stitcher.com/show/on-our-watch","rss":"https://feeds.npr.org/510360/podcast.xml"}},"on-the-media":{"id":"on-the-media","title":"On The Media","info":"Our weekly podcast explores how the media 'sausage' is made, casts an incisive eye on fluctuations in the marketplace of ideas, and examines threats to the freedom of information and expression in America and abroad. 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