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.

WE'LL BE BLUNT.

We have a considerable $390,000 gap in our online fundraising budget that we have to close by June 30. There is no wiggle room, we've already cut everything we can, and we urgently need more readers to pitch in—especially from this specific blurb you're reading right now.

We'll also be quite transparent and level-headed with you about this.

In "News Never Pays," our fearless CEO, Monika Bauerlein, connects the dots on several concerning media trends that, taken together, expose the fallacy behind the tragic state of journalism right now: That the marketplace will take care of providing the free and independent press citizens in a democracy need, and the Next New Thing to invest millions in will fix the problem. Bottom line: Journalism that serves the people needs the support of the people. That's the Next New Thing.

And it's what MoJo and our community of readers have been doing for 47 years now.

But staying afloat is harder than ever.

In "This Is Not a Crisis. It's The New Normal," we explain, as matter-of-factly as we can, what exactly our finances look like, why this moment is particularly urgent, and how we can best communicate that without screaming OMG PLEASE HELP over and over. We also touch on our history and how our nonprofit model makes Mother Jones different than most of the news out there: Letting us go deep, focus on underreported beats, and bring unique perspectives to the day's news.

You're here for reporting like that, not fundraising, but one cannot exist without the other, and it's vitally important that we hit our intimidating $390,000 number in online donations by June 30.

And we hope you might consider pitching in before moving on to whatever it is you're about to do next. It's going to be a nail-biter, and we really need to see donations from this specific ask coming in strong if we're going to get there.

payment methods

WE'LL BE BLUNT.

We have a considerable $390,000 gap in our online fundraising budget that we have to close by June 30. There is no wiggle room, we've already cut everything we can, and we urgently need more readers to pitch in—especially from this specific blurb you're reading right now.

We'll also be quite transparent and level-headed with you about this.

In "News Never Pays," our fearless CEO, Monika Bauerlein, connects the dots on several concerning media trends that, taken together, expose the fallacy behind the tragic state of journalism right now: That the marketplace will take care of providing the free and independent press citizens in a democracy need, and the Next New Thing to invest millions in will fix the problem. Bottom line: Journalism that serves the people needs the support of the people. That's the Next New Thing.

And it's what MoJo and our community of readers have been doing for 47 years now.

But staying afloat is harder than ever.

In "This Is Not a Crisis. It's The New Normal," we explain, as matter-of-factly as we can, what exactly our finances look like, why this moment is particularly urgent, and how we can best communicate that without screaming OMG PLEASE HELP over and over. We also touch on our history and how our nonprofit model makes Mother Jones different than most of the news out there: Letting us go deep, focus on underreported beats, and bring unique perspectives to the day's news.

You're here for reporting like that, not fundraising, but one cannot exist without the other, and it's vitally important that we hit our intimidating $390,000 number in online donations by June 30.

And we hope you might consider pitching in before moving on to whatever it is you're about to do next. It's going to be a nail-biter, and we really need to see donations from this specific ask coming in strong if we're going to get there.

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