genomeboy.com

Peter Dizikes has a wonderfully nuanced article about genomic privacy in Salon (which I remember reading back when it was run by three people in their basement with an Apple II). The piece features quotes from Linda Avey, Amy DuRoss, Blaine Bettinger (a law student! who knew?), and yours truly, among others. My favorite is from the always pithy and thoughtful Hank Greely:

This is the seeming paradox of DNA: The better we understand our genes, the less important we might find them. “People believe in the magic of genes, and buy into the idea that they are the deepest secrets of our being,” Greely says. “Whereas maybe my credit card records come closer to being a deep secret of my being.”

Sway: I know people have piercings, tattoos. Eric, in particular, is talking about a ban on sagging pants. Do [you] feel like people should be penalized?

Obama: Here is my attitude: I think people passing a law against people wearing sagging pants is a waste of time. We should be focused on creating jobs, improving our schools, health care, dealing with the war in Iraq, and anybody, any public official, that is worrying about sagging pants probably needs to spend some time focusing on real problems out there. Having said that, brothers should pull up their pants. You are walking by your mother, your grandmother, your underwear is showing. What’s wrong with that? Come on. There are some issues that we face, that you don’t have to pass a law, but that doesn’t mean folks can’t have some sense and some respect for other people and, you know, some people might not want to see your underwear — I’m one of them.

Via the immortal Balk

NEW YORK (GenomeWeb News) – Large amounts of aggregate human DNA data that the National Institutes of Health and other groups made open to researchers around the world is being locked up from public view due to privacy concerns that arose this week when a new forensic DNA method was announced that could conceivably leave people vulnerable to identification.

So that’s it? After all the elaborate mechanisms put in place for investigator applications, data submission, data access, data monitoring, data oversight, and governance…now we just pull the plug on sharing of GWAS data because it can’t be protected?

Privacy is changing rapidly and in ways we can barely comprehend. Will we live our lives differently, fearing that our everyday social contacts are going to wind up in some great database? How will the world change when group photos snapped at parties all turn into misleading edges in that permanent, all-encompassing social graph? Can society limit the abuse of personal information without resorting to Internet censorship that would violate the First Amendment?

Yes, already happening, and no.

(hat tip)