genomeboy.com

A few weeks ago the Genetic Genealogist gave us a lively summary of the issues raised by this paper from Stanford’s Hank Greely. If you haven’t seen it, I think it’s probably as damning an indictment of current practice regarding human genetic research subject confidentiality and anonymity as you’ll ever read.

The current Nature Genetics features a commentary from the GAIN Collaborative Research Group (a public-private consortium of investigators carrying out genome-wide disease association studies) that offers a rather different perspective. Dig the disconnect:

GAIN:

“Investigators granted access to GAIN data should ensure confidentiality of study participants and follow any limitations specified by their informed consent.”

Greely:

“…plans for a Genome-Wide Association Studies database by the [NIH] illegally and unethically strip people of the legal status of human subjects…blanket consent, although extremely convenient for genomic biobanks, is both ethically and legally suspect.”

GAIN:

“Individual participant data will be kept secure and will not be distributed.”

Greely:

“…patient identity is not, and cannot be, effectively protected in large-scale genomic biobanks.”

GAIN:

“Data will not be used to identify or contact individual participants from any GAIN study.”

Greely:

“…the result of anonymizing data is not only nearly useless, but is itself unethical…”

“…biomedical research, including genomic biobanks, has a moral obligation, now almost always evaded, to inform research subjects of clinically significant information.”

You might say, “Yeah, well, Greely’s just one guy.” And I might say, “Yeah, well, read this article and the 15 commentaries that follow it and then talk to me about consensus.”

I don’t see a Kumbaya moment happening anytime soon.

A brief housekeeping note: genomeboy.com is now a member of the fabulous DNA Network, a one-stop shop for all of your molecular bloggerocity.

However smitten I might be with technology, however high I’m prepared to fly the flag of the early adopters, I must admit I do have my blind spots. Exhibit A: the LongPen™.

When Margaret Atwood, brilliant writer and peerless creator of dystopian worlds (including a chilling one wrought by genomics), said she had developed a device that would let authors sign autographs remotely, lots of folks thought it was a joke.

It’s not.

But after watching the propaganda video, it strikes me as the kind of surreal technology that might spring up in one of Atwood’s own novels. Again, I’m hardly a Luddite (what, you thought Genome Boy wouldn’t give up his buggy whip?), but must every face-to-face human interaction now compete with a virtual one? “Yes yes,” they say, “…but you don’t understand: the LongPen™ is green!”

Whatever, I’m sure it is. But is this really about environmentalism? Is that why you talk about the “democratizing” powers of your new device, one that happens to spare you from sharing oxygen with the hoi polloi and exposing yourself to their nasty germs via a handshake or–shudder!–an embrace? Or is it just that, as you say in the video, sometimes you “don’t want to deal with room service?” Yeah, well, I’m told the Four Seasons can be just brutal…

God forbid you should get off your arse, venture out of your gilded garret and go some place to meet the occasional throng of adoring fans on someone else’s nickel.

(hat tip: Rake)