Should I join the UK genome project?

November 13, 2013 4:45 PM

I'm interested in joining the UK personal genome project (PGP), as I like big science and think that the project looks interesting and has some admirable aims. However, I'm not so sure about having my genetic information freely available on the internet, and I don't fully understand what the risks of this could be. I found this article on the gurdian, but any more information, resources or advice would be appreciated. Thanks.
posted by Ned G to Science & Nature (3 answers total)

Best answer: I'm a member of the US PGP cohort. Not only should you not join unless you fully understand the risks, you probably cannot join until you fully understand the risks, or at least can pass the PGP's test and score 100% that you understand basic genetics, the research process, and the risks associated with your participation. Read the popular press discussion if you like, but the most thorough rundown of possible risks associated with your participation is probably going to be on the PGP's own website. For instance, this Risks and Benefits page. I'd start there, then work through their participant information pages if you still think it's something you might like to do.

In principle, you can dream up all kinds of different risk scenarios for use of your genetic information. In practice, I personally rate the most likely risks as A) finding out you're at either a slightly higher or much higher increased risk for a disease for which there's no cure or preventative treatment today (how comfortable are you knowing your risk for Alzheimer's disease, for instance?), and B) finding out heredity information that suggests/proves that someone you assumed was related to you isn't, actually. Related to B), you also want to consider to what degree you believe putting your information out there into the world also puts not just you, but your current relatives or future offspring at risk, and whether or not you have a duty to tell them. The U.S. PGP cohort is mixed on this. The Canadian project highly encourages (or perhaps mandates, I don't remember) discussion with not your just your immediate, but also your extended family members.

Lastly, don't expect results anytime soon. I've been in the cohort since 2010, and I'm still waiting.
posted by deludingmyself at 5:47 PM on November 13, 2013 [1 favorite]

Best answer: I second everything deludingmyself said. Building on that, I suggest considering what your worst case scenario is. This Nature editorial basically states the concern is not could genetic data be leaked, but how to mitigate the effects of a leak. So ... what is the worst case scenario: that through a series of what-if events (what if the records are hacked AND you are identified AND you have something interesting AND somehow this makes into the public domain AND someone close to you finds all this out) then what? And be honest about how little/much interest your genetic information is to most other persons.

As a thought experiment, what would your reaction be if your current medical records were released to the public? Would you ever submit DNA to a company such as 23andMe? Keep in mind too that there's a lot of data about you out there already in assorted databases and these have likely been hacked already: credit cards, government records, etc. Don't expect this to be any more secure than those-and also expect that those databases are likely of more interest to the criminal hacker than the PGP database is.

For scholarly resources, try going to pubmed and searching under various terms such as genetics research privacy. You can set the filters on the left for free articles but you can contact me if there's one you want but can't access.
posted by beaning at 6:07 PM on November 13, 2013

Response by poster: A big thanks to both of you!
posted by Ned G at 3:00 PM on November 17, 2013