Genetic Privacy
rskloot | January 24, 2010I've been meaning to post about this for several weeks, but as we all know, things have been a weee bit hectic. But now, finally: News on the informed consent for using tissues in research front.
Since the 1960s, US law has mandated that all newborns be screened for
genetic diseases. What most people don't know is that those samples
are often stored and used in future research without the knowledge of
the parents (or, obviously, the children). I write about this in the afterward of my book, which is of course directly related to this issue.
For decades ethicists, scientists, policy makers…
dgmacarthur | January 7, 2010Genetic genealogist Blaine Bettinger has a fantastic post dissecting and contextualising a rather worrying result from his personal genomic analysis: a 50-60% increased lifetime risk of type 2 diabetes.
Blaine is unfortunate enough to be among the 1-2% of individuals who carry two risky versions at each of three major risk variants for the disease. (It's worth noting that type 2 diabetes risk is determined by many different genetic variants, most of which remain unknown, as well as environmental factors - so Blaine's discovery is very far from a certain diagnosis of the disease.)
Blaine's…
rskloot | October 31, 2009
Inside Higher Ed just reported that an adjunct instructor at the University of Akron quit when he was told that he had to submit to DNA testing. "It's not enough that the university doesn't pay us a living wage, or
provide us with health insurance," the instructor said, "but now they want to sacrifice the
sanctity of our bodies. No." He was right to question their policy: The Genetic Information Nondiscrimination Act of 2008 specifically states:
It shall be an unlawful employment practice for an employer to fail or refuse to hire or to discharge any employee, or otherwise to
discriminate…
rskloot | October 3, 2009
Lots of excitement here at Culture Dish: The final cover for The Immortal Life of Henrietta Lacks has arrived (see left). And ... <drum roll> ... the the book's first pre-publication review has hit the press: In the issue coming out this Monday, Publishers Weekly gives The Immortal Life a starred review, calling it, "a remarkable debut ... a rich, resonant tale of modern science, the wonders it can perform and how easily it can exploit society's most vulnerable people." (wOOt!) Full review here and here:
"Science journalist Skloot makes a remarkable debut with
this multilayered story…
dgmacarthur | March 6, 2009John Halamka reports that Google Health has quietly launched an application for secure sharing of your online medical records:
The Google solution, introduced without fanfare, solves many
confidentiality issues by putting the patient in control of medical
record sharing. Call it "Facebook for Healthcare". You invite those who
you believe should see your medical information and you can disinvite
them at anytime.
Halamka, as one of the first 10 participants of the audacious Personal Genome Project, knows more than a little about sharing health data: he's agreed to publish both his medical…
rskloot | January 22, 2009
There's a fascinating story in the new issue of The New Scientist about people's DNA being tested without their knowledge. Suspicious spouses are sneaking DNA samples from their partner's underwear; men and women are covertly testing their children to find out if they're really biologically related, and several companies have cropped up to help them. These tests -- and the companies performing them for a fee -- raise a lot of questions about genetic privacy (and come with some really weird photos) ...
"Test Infidelity is just one of dozens of US companies offering to
test DNA taken…