{"id":2661,"date":"2013-11-22T12:03:56","date_gmt":"2013-11-22T11:03:56","guid":{"rendered":"https:\/\/blogs.bmj.com\/medical-ethics\/?p=2661"},"modified":"2013-11-22T14:09:05","modified_gmt":"2013-11-22T13:09:05","slug":"genes-and-confidentiality-tricky","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/medical-ethics\/2013\/11\/22\/genes-and-confidentiality-tricky\/","title":{"rendered":"Genes and Confidentiality: Tricky!*"},"content":{"rendered":"<p>A couple of weeks ago, the\u00a0<em>D&#8211;ly M&#8211;l<\/em>** asked me to comment on the <span style=\"text-decoration: underline\"><span style=\"color: #0000ff\"><a href=\"http:\/\/www.personalgenomes.org.uk\/\"><span style=\"color: #0000ff;text-decoration: underline\">Personal Genome Project<\/span><\/a><\/span><\/span>&#8216;s call for 100 000 volunteers who&#8217;d be willing to have their DNA sequenced so that it could be correlated with their health records and used as a tool for research. \u00a0As it happens, my peals of wisdom never made it into print, but here&#8217;s an expanded version of the things I said.<\/p>\n<p>First up, this project is superficially similar to that undertaken by the <span style=\"text-decoration: underline\"><span style=\"color: #0000ff\"><a href=\"http:\/\/www.ukbiobank.ac.uk\/\"><span style=\"color: #0000ff;text-decoration: underline\">UK Biobank<\/span><\/a><\/span><\/span>. \u00a0The idea behind both is that, since many illnesses have a genetic component to them, understanding those illnesses fully will require doing genetic research. \u00a0Sometimes that will be on cells in a lab; sometimes it\u2019ll be population surveys.\u00a0 Often, the idea will be to learn as much as we can about individuals\u2019 genomes, and then to keep track of their health over a prolonged period.\u00a0 If, across the population, we notice a correlation between a given gene and a given illness, the hope would be that we could work out more effective treatments. \u00a0Insofar as participating in this project might help with research into things like cancer, it\u2019s tempting to think that it\u2019s admirable \u2013 some even argue that participation in medical research is a moral duty (though others disagree: <span style=\"text-decoration: underline;color: #0000ff\"><a href=\"http:\/\/jme.bmj.com\/content\/31\/4\/242.full.pdf\"><span style=\"color: #0000ff;text-decoration: underline\">to<\/span><\/a><\/span> and <span style=\"text-decoration: underline\"><span style=\"color: #0000ff\"><a href=\"http:\/\/onlinelibrary.wiley.com\/store\/10.1111\/j.1467-8519.2007.00539.x\/asset\/j.1467-8519.2007.00539.x.pdf?v=1&amp;t=hobabq9u&amp;s=0712f12207d07c28032cd42ce9a76c28f563dee4\"><span style=\"color: #0000ff;text-decoration: underline\">fro<\/span><\/a><\/span><\/span> and <span style=\"text-decoration: underline\"><span style=\"color: #0000ff\"><a href=\"http:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/j.1467-8519.2008.00648.x\/full\"><span style=\"color: #0000ff;text-decoration: underline\">to<\/span><\/a><\/span><\/span> and <span style=\"text-decoration: underline\"><span style=\"color: #0000ff\"><a href=\"http:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/j.1467-8519.2009.01745.x\/full\"><span style=\"color: #0000ff;text-decoration: underline\">fro<\/span><\/a><\/span><\/span>***; cf <span style=\"text-decoration: underline\"><span style=\"color: #0000ff\"><a href=\"http:\/\/jme.bmj.com\/content\/33\/7\/414.full.pdf\"><span style=\"color: #0000ff;text-decoration: underline\">this<\/span><\/a><\/span><\/span> and <span style=\"text-decoration: underline\"><span style=\"color: #0000ff\"><a href=\"http:\/\/jme.bmj.com\/content\/early\/2013\/01\/30\/medethics-2012-100859.full.pdf\"><span style=\"color: #0000ff;text-decoration: underline\">this<\/span><\/a><\/span><\/span> and <span style=\"text-decoration: underline\"><span style=\"color: #0000ff\"><a href=\"http:\/\/jme.bmj.com\/content\/early\/2013\/02\/28\/medethics-2013-101370.full.pdf\"><span style=\"color: #0000ff;text-decoration: underline\">this<\/span><\/a><\/span><\/span>).<\/p>\n<p>However, there are also moral problems to consider.<!--more-->\u00a0 For one thing, the PGP does not promise anonymity and confidentiality \u2013 in fact, it&#8217;s explicit that it won&#8217;t be seeking to maintain it \u2013\u00a0and these are generally a default requirement for any medical or research procedure.\u00a0 It\u2019s important, then, that participants fully understand what is being asked of them, and that what is being asked is unconventional. \u00a0To its credit, the PGP is <span style=\"text-decoration: underline\"><span style=\"color: #0000ff\"><a href=\"http:\/\/www.personalgenomes.org.uk\/non-anonymous\"><span style=\"color: #0000ff;text-decoration: underline\">not backwards in coming forwards<\/span><\/a><\/span><\/span> in respect of this:<\/p>\n<div>\n<blockquote><p>A surprisingly small amount of data is necessary to uniquely identify a person by name. For example, a zip code, birthdate and gender may be enough to infer someone\u2019s identity with a high degree of accuracy. One of the most identifiable pieces of information is human DNA sequence: it can be used to predict a variety of medical conditions and traits, like hair and eye color, facial features and even surname.<\/p>\n<p>Because we cannot guarantee privacy and we are committed to sharing data for the advancement of science, we feel the most ethical and practical solution is to collaborate with individuals who are comfortable sharing their data without any promises of privacy, confidentiality or anonymity. We call this \u201copen consent\u201d.<\/p><\/blockquote>\n<\/div>\n<p>I actually think that this is a brave move: it&#8217;s laudably candid. \u00a0And\u00a0as long as it is understood from the start, loss of anonymity need not be a huge problem. \u00a0The website is <span style=\"text-decoration: underline\"><span style=\"color: #0000ff\"><a href=\"http:\/\/www.personalgenomes.org.uk\/risks-benefits\"><span style=\"color: #0000ff;text-decoration: underline\">clear on the risks, too<\/span><\/a><\/span><\/span>:<\/p>\n<div>\n<blockquote><p>Because personal genome sequencing is a new human endeavor, as a society we lack a detailed understanding of all risks posed by an individual&#8217;s genome sequence being known and widely shared. At a minimum, individuals should be comfortable with a variety of worst-case scenarios and known risks. In principle, anyone with sufficient knowledge could take a participant&#8217;s genome and\/or other personal information and use them to:<\/p>\n<p style=\"padding-left: 30px\">infer paternity or other features of the participant&#8217;s genealogy<\/p>\n<p style=\"padding-left: 30px\">claim statistical evidence that could affect employment or insurance or the ability to obtain financial services for the participant<\/p>\n<p style=\"padding-left: 30px\">claim relatedness to criminals or incriminate relatives<\/p>\n<p style=\"padding-left: 30px\">make synthetic DNA corresponding to the participant and plant it at a crime scene<\/p>\n<p style=\"padding-left: 30px\">reveal propensity for a disease currently lacking effective treatment options<\/p>\n<p>The improvement of our understanding and management of these risks is as important a contribution to the long-term utility of personal genomics as any other this project and its participants may achieve.<\/p><\/blockquote>\n<\/div>\n<p>There&#8217;s something a little strange about the benefits listed (the participation in a cause that aims to advance medicine and global health;\u00a0to contribute directly to a scientific endeavor;\u00a0self-curiosity) inasmuch as that I&#8217;m not sure how one would weigh them against the risks &#8211; but that&#8217;s a minor thing. \u00a0Maybe I&#8217;d replace the &#8220;risks and benefits&#8221; language with &#8220;reasons to participate and reasons not to&#8221;.<\/p>\n<p>Still: the focus is on the would-be participant, and ensuring informed consent, and all that stuff. \u00a0Yet I think that there are problems with that. \u00a0Important as informed consent from the participant might be,\u00a0the problem with information about genes is that it\u2019s not like other information: it\u2019s not just about you or me.\u00a0 If I have a cold and enrol into research on that, it tells us nothing about my relatives; if I have a particular gene, though, it does, because genes are shared between family members.\u00a0 In a nutshell, a person allowing genetic information to be used in studies like this is in effect speaking on behalf of her identical twin sister, and other siblings, parents, children, and so on.\u00a0 This raises a number of questions.\u00a0 Is it <em>possible<\/em>\u00a0for anyone to give adequate consent in this circumstance?\u00a0 That is: should we be looking to gain the consent of the participant\u2019s blood relatives?\u00a0 That would be prohibitively impractical, and we\u2019d have to weigh up their interests with the common interest in understanding illness; but given that genetic information can be stigmatising, it\u2019s an important consideration. \u00a0Suppose, too, that a relative refuses consent: would that mean that the would-be participant should be barred from participating? \u00a0(Oh, nuts to it: I&#8217;ve pimped myself so much in this post already that <span style=\"text-decoration: underline\"><span style=\"color: #0000ff\"><a href=\"http:\/\/link.springer.com\/article\/10.1007\/s11017-010-9145-x\"><span style=\"color: #0000ff;text-decoration: underline\">one more instance<\/span><\/a><\/span><\/span> can&#8217;t do any harm&#8230;) \u00a0Does it really make sense to talk about genetic information \u201cbelonging\u201d to a person anyway, given that it is by its nature shared? \u00a0The answer that we give to that will make a big difference to how we answer the other questions. \u00a0For sure, we tend to think in terms of &#8220;my information&#8221;; but that doesn&#8217;t imply ownership, any more than the phrase &#8220;he took my photograph&#8221; implies that anyone has done anything to anything I own.<\/p>\n<p>One thing I didn&#8217;t say to the\u00a0<em>M&#8211;l<\/em>, and that&#8217;s only just occurred to me, has to do with why this project is necessary given that there&#8217;s already Biobank. \u00a0Is it possible that there&#8217;s an element of me-too-ism? \u00a0UKB is five times bigger; but it won&#8217;t, as far as I can see, make use of or release as much data &#8211; it doesn&#8217;t involve things like MRI scans, which the PGP does. \u00a0While the PGP is avowedly non-profitmaking, that&#8217;s compatible with there being big questions about data ownership. \u00a0Answers on a postcard, please.<\/p>\n<p>&nbsp;<\/p>\n<p>* This title was brought to you by the letters G, A, C and T. \u00a0Oh, yes.<\/p>\n<p>** Yes, yes. \u00a0I know. \u00a0I&#8217;m trying to make it better one tiny bit at a time. \u00a0Also, it might count as impact.<\/p>\n<p>*** I&#8217;ve re-worked and expanded the fro arguments elsewhere: *cough*<span style=\"text-decoration: underline\"><span style=\"color: #0000ff\"><a href=\"http:\/\/www.bloomsbury.com\/uk\/bioscience-and-the-good-life-9781849663397\/\"><span style=\"color: #0000ff;text-decoration: underline\">chapters8and9<\/span><\/a><\/span><\/span>*cough*<!--TrendMD v2.4.8--><\/p>\n","protected":false},"excerpt":{"rendered":"<p>A couple of weeks ago, the\u00a0D&#8211;ly M&#8211;l** asked me to comment on the Personal Genome Project&#8216;s call for 100 000 volunteers who&#8217;d be willing to have their DNA sequenced so that it could be correlated with their health records and used as a tool for research. \u00a0As it happens, my peals of wisdom never made [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/medical-ethics\/2013\/11\/22\/genes-and-confidentiality-tricky\/\">Read More&#8230;<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2147,511,1266],"tags":[],"class_list":["post-2661","post","type-post","status-publish","format-standard","hentry","category-genetic-jiggerypokery","category-in-the-news","category-shameless-self-publicity"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Genes and Confidentiality: Tricky!* - Journal of Medical Ethics blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blogs.bmj.com\/medical-ethics\/2013\/11\/22\/genes-and-confidentiality-tricky\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta 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