genomeboy.com

CNN:

Many parents don’t realize their baby’s DNA is being stored in a government lab, but sometimes when they find out, as the Browns did, they take action. Parents in Texas, and Minnesota have filed lawsuits, and these parents’ concerns are sparking a new debate about whether it’s appropriate for a baby’s genetic blueprint to be in the government’s possession.

“We were appalled when we found out,” says Brown, who’s a registered nurse. “Why do they need to store my baby’s DNA indefinitely? Something on there could affect her ability to get a job later on, or get health insurance.”

Just wait until they get hold of baby’s email.

(Hat tip)

At Nature News, there is something of a eulogy/finger-pointing festival for deCODE and indeed, for personal genomics in general:

…Some other researchers, however, say that deCODE’s scientific approach is to blame. The company worked to mine genetic data for common variations linked to disease through genome-wide association studies (GWAS), and some experts note that these studies have turned up only a small fraction of the variation that causes disease. “The translation to commercial value is just not very direct,” says [Duke’s David] Goldstein, “in part because it is now clear that GWAS is not the tool of choice for unlocking the genetics of most common diseases.”

***

…companies that focus exclusively on personal genomics services, such as the one sold by deCODE as deCODEme, might find themselves in more trouble, [Leerink Swann’s Isaac] Ro says. The services are not seen as a medical necessity, diminishing their appeal, particularly in difficult economic times. This year the personal-genomics company 23andMe, based in Mountain View, California, announced two rounds of lay-offs, lost one of its two co-founders and announced a series of product and price restructurings.

“There’s no clinical trial supporting the value of these results, so it’s really recreational genomics,” Ro says. Large academic centres, not consumers, will find value in the rich genetic databases; 23andMe has tried to move into the research market, but because its data come from a self-selected customer population their value is limited, he says.

Here we go, still trotting out the same tired tropes. I agree: GWAS is of limited value and this probably contributed to deCODE’s demise. But whatever deCODE’s fate, if whole human genomes can be sequenced for < $2000, isn’t it about time we stopped kicking GWAS’s ever-stiffening corpse?  Second, just because something is not a medical necessity, does it follow that it is worthless? Ask the participants in the REVEAL study or anyone else who’s received an APOE genotype because she WANTED to know. Ask the people who learned something about their hereditary breast cancer risk from 23andMe. Is that recreation? What about abacavir hypersensitivity? And finally:  yes, DTC genomics customers are self-selected. So are the 50,000 PatientsLikeMe participants. So are the 10,000 in the Coriell Personalized Medicine Collaborative. So are the 15,000 on the Personal Genome Project waiting list. So are the 400,000 in the UK Biobank. Maybe we should just toss out all of that data, too.

From a compelling story in the New York Times Magazine:

In an age of DNA, when biological relationships can be identified with certainty, it can seem absurd to hew so closely to a centuries-old idea of paternity. And yet basing paternity decisions solely on genetics places the nonbiological father’s welfare above the child’s. Phil Reilly, a lawyer who is also a clinical geneticist, has been wrestling with the policy implications of DNA testing for years, and even he is stumped about how society should manage the problem that men like Mike face. “We’re at a point in our society where the DNA molecule is ascendant, and it’s very much in the public’s consciousness that this is a powerful way to identify relationships,” Reilly says. “Yet at the same time, more people than ever are adopting children, showing that parents can very much love a child who is not their own. The difference here for many men is the combination of hurt and rage over the deceit, the fact that they’re twice beaten. I can see both sides of this argument. As a nation, we’re still in search of what the most ethical policy should be. Every solution is imperfect.”

The Personal Genome Project includes disclosure of nonpaternity as one of the explicit risks of participation. That said, having been warned is probably not much consolation to people who discover certain surprising things about their families.

Given the Halloween season, this story seems appropriate somehow:

A report in 2007 by the lobbying group Privacy International placed Britain in the bottom five countries for its record on privacy and surveillance, on a par with Singapore.

But the intrusions visited on Jenny Paton, a 40-year-old mother of three, were startling just the same. Suspecting Ms. Paton of falsifying her address to get her daughter into the neighborhood school, local officials here began a covert surveillance operation. They obtained her telephone billing records. And for more than three weeks in 2008, an officer from the Poole education department secretly followed her, noting on a log the movements of the “female and three children” and the “target vehicle” (that would be Ms. Paton, her daughters and their car).

From the HIPAA, SHMIPAA files:

A new survey of medical-school deans finds that unprofessional conduct on blogs and social-networking sites is common among medical students. Although med students fully understand patient-confidentiality laws and are indoctrinated in the high ethical standards to which their white-coated profession is held, many of them still use Facebook, YouTube, Twitter, Flickr and other sites to depict and discuss lewd behavior and sexual misconduct, make discriminatory statements and discuss patient cases in violation of confidentiality laws, according to the survey, which was published this week in the Journal of the American Medical Association.

From “ESPN’S ADDITIONAL GUIDELINES FOR SOCIAL NETWORKING”:

• Personal websites and blogs that contain sports content are not permitted
• Prior to engaging in any form of social networking dealing with sports, you must receive permission from the supervisor as appointed by your department head
• If ESPN.com opts not to post sports related social media content created by ESPN talent, you are not permitted to report, speculate, discuss or give any opinions on sports related topics or personalities on your personal platforms
• The first and only priority is to serve ESPN sanctioned efforts, including sports news, information and content
• Assume at all times you are representing ESPN
• If you wouldn’t say it on the air or write it in your column, don’t tweet it
• Any violation of these guidelines could result in a range of consequences, including but not limited to suspension or dismissal.

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)