To increase the amount of democracy in the world, we’ve introduced a poll to let you, our wonderful benefactors, choose who will have The deCODEme Buccal Swab™ jammed deep into their gaping maw by the other. Don’t forget that this poll means nothing (except to our respective egos) unless we actually get the funds to make it happen.
take your pick
If Jon wins the poll, will he post the results of his test online so that we can see all of his genetic defects and the diseases he’s prone to?
By: Matt on April 4, 2008
at 4:58 am
This blog is going to be used to publically tease out how a decision like that is made — in other words, to make the consent as informed as possible. So, I don’t know…yet.
By: Jon on April 4, 2008
at 5:58 am
Good question. If it were up to me (and not about my genes) I would want a really close analysis of all the results alongside personal reflections by the swabbee about their lifestyle and family history.
I have a feeling that since we’re also doing this as a kind of experiment in funding small-time research, we’re going to be obligated to our funding agencies (financial donors) to present as much as we can without harming the swabbee.
Maybe we could do a double-blind sort of thing, where we both present our thoughts on the analysis, but don’t reveal whose the true swabbee was?
By: Grant on April 4, 2008
at 6:11 am
Full disclosure is probably not the best idea because of the volatile nature of genetic testing. There are some markers that I’d have no problem with disclosing (male pattern baldness, bitter taste perception [I already know I have this], lactose intolerance, and restless legs), but the others are sketchier. Given that there is already legislation on the books ( http://www.genome.gov/11510239 ), and more forthcoming ( http://thomas.loc.gov/cgi-bin/bdquery/z?d110:SN00358:@@@L&summ2=m& ), it might be “safe” to reveal a genetic profile now, but once that information is out there, it can’t be taken back. More on this later…
By: Jon on April 4, 2008
at 8:10 am