When It Comes to Your Genes, How Much is Too Much Information?

<a href="http://www.flickr.com/photos/blueridgekitties/3883646277/">BlueRidgeKitties</a>/Flickr

Fight disinformation: Sign up for the free Mother Jones Daily newsletter and follow the news that matters.


Would you want to know if you are at risk of developing a life-threatening disease? What if it’s totally incurable? What if there’s only a 5 percent chance it would even happen in your lifetime? On Tuesday, an ethics group at the Wellcome Sanger Institute in Cambridge launched a site designed to wrestle with exactly these types of moral questions quickly cropping up due to the increased prevalence of gene sequencing.

If you are a volunteer in a medical study, for example, and have handed over a spit sample of DNA, the survey tries to determine what responsibility researchers have to let you know if they discover something sticky you may not know about along the way. The survey (chock full of images of “scientists” very seriously pipetting) is designed to crowd-source the data collection process in hopes of gauging broad public attitudes towards genomic testing; the eventual goal is to help inform emerging public policies on the issue. And don’t worry if you don’t consider yourself super science-literate—the questions are all designed to hit pretty close to home. The harder part will be figuring out how you really feel about knowing what’s in the cards for you.

How much would you really like to know? Visit http://www.genomethics.org to fill out the survey.

DONALD TRUMP & DEMOCRACY

Mother Jones was founded to do things differently in the aftermath of a political crisis: Watergate. We stand for justice and democracy. We reject false equivalence. We go after, and go deep on, stories others don’t. And we’re a nonprofit newsroom because we knew corporations and billionaires would never fund the journalism we do. Our reporting makes a difference in policies and people’s lives changed.

And we need your support like never before to vigorously fight back against the existential threats American democracy and journalism face. We’re running behind our online fundraising targets and urgently need all hands on deck right now. We can’t afford to come up short—we have no cushion; we leave it all on the field.

Please help with a donation today if you can—even just a few bucks helps. Not ready to donate but interested in our work? Sign up for our Daily newsletter to stay well-informed—and see what makes our people-powered, not profit-driven, journalism special.

payment methods

DONALD TRUMP & DEMOCRACY

Mother Jones was founded to do things differently in the aftermath of a political crisis: Watergate. We stand for justice and democracy. We reject false equivalence. We go after, and go deep on, stories others don’t. And we’re a nonprofit newsroom because we knew corporations and billionaires would never fund the journalism we do. Our reporting makes a difference in policies and people’s lives changed.

And we need your support like never before to vigorously fight back against the existential threats American democracy and journalism face. We’re running behind our online fundraising targets and urgently need all hands on deck right now. We can’t afford to come up short—we have no cushion; we leave it all on the field.

Please help with a donation today if you can—even just a few bucks helps. Not ready to donate but interested in our work? Sign up for our Daily newsletter to stay well-informed—and see what makes our people-powered, not profit-driven, journalism special.

payment methods

We Recommend

Latest

Sign up for our free newsletter

Subscribe to the Mother Jones Daily to have our top stories delivered directly to your inbox.

Get our award-winning magazine

Save big on a full year of investigations, ideas, and insights.

Subscribe

Support our journalism

Help Mother Jones' reporters dig deep with a tax-deductible donation.

Donate