InformationWeek reports on a way to identify individuals by using the bacteria left by people on objects.

Scientists at the University of Colorado at Boulder have found that the bacteria trail left behind on objects like computer keyboards and mice can analyzed and used to help identify users of those devices.

“Your body is coated with bacteria inside and out,” says CU-Boulder assistant professor Noah Fierer in a video on YouTube. “You’re basically a walking microbial habitat. And we found that the diversity of bacteria just on the skin surface is really pretty incredible. You habor hundreds of different bacteria species just on your palm, for example. We’ve also found that everybody is pretty unique. So of those let’s say hundred or so bacteria species, very few are of them are shared between individuals.” [...] Read more »

Slate has an interesting story about how improved DNA testing has made it more difficult for sperm donors to remain anonymous:

In an age of sophisticated genetic testing, the concept of anonymity is rapidly fading. With some clever sleuthing—tests that can track down ancestral origins, donor numbers, and bits of biographical information—parents and offspring can find out the donors. “With DNA testing and Google, there’s no such thing as anonymity anymore,” says Wendy Kramer, the founder of the Donor Sibling Registry. “Donors are choosing anonymity because they’re not educated,” adds Kramer. “If they were properly educated on the consequences, then many would choose not to donate.” [...] Read more »

A few months ago, Texas announced that, as part of a lawsuit settlement agreement with the Texas Civil Rights Project, it would destroy five million blood samples taken from babies without their parents’ consent, a tactic that raised substantial privacy questions. Now, the Texas Tribune has learned, Texas officials also “were turning over hundreds of dried blood samples to the federal government to help build a vast DNA database.”

A Texas Tribune review of nine years’ worth of e-mails and internal documents on the Department of State Health Services’ newborn blood screening program reveals the transfer of hundreds of infant blood spots to an Armed Forces lab to build a national and, someday, international mitochondrial DNA (mtDNA) registry. The records, released after the state agreed in December to destroy more than 5 million infant blood spots, also show an effort to limit the public’s knowledge of aspects of the newborn blood program, and to manage the debate around it. But the plaintiffs who filed the lawsuit never saw them, because the state settled the case so quickly that it never reached the discovery phase.

DSHS spokeswoman Carrie Williams says that while the department’s general philosophy was to save blood spots for public health research, “we did not have an exclusive policy.” She says DSHS participated in the project because officials believed it would help in missing-persons cases — and knew the blood spots could not be linked back to a particular individual. [...] Read more »

Government Health IT reports that the Health and Human Services Department has named a chief privacy officer for the Office of the National Coordinator for Health IT. Joy Pritts is an Assistant Research Professor at Georgetown University’s Health Policy Institute. Her faculty bio page says, “Her primary area of research is the privacy of medical information, including individuals’ access to their own medical information. Ms. Pritts conducts legal research and analysis on both state and federal privacy laws.”

Government Health IT reports:

The chief privacy officer is a new role at ONC, part of a re-organization now underway to help the office meet its responsibilities under the American Recovery and Reinvestment Act. Read more »

The Associated Press has a story about something I’ve written about before: the unauthorized or unknowing retention and use of newborn babies’ blood samples for purposes other than disease screening. A few months ago, Texas announced that, as part of a lawsuit settlement agreement, it would destroy five million blood samples taken from babies without their parents’ consent and the Washington Post has written about the ethics and privacy issues when children’s medical data is collected and retained without parents’ knowledge or consent.

Privacy issues connected to newborns’ blood samples have been raised internationally, as well. In New Zealand, the Privacy Commissioner warned against expanding the use of such genetic data beyond disease testing, noting DNA is the “ultimate marker of identity.” A Tel Aviv University researcher’s article in Science said we don’t know the future privacy or civil liberty implications of distributing children’s genetic data.

AP reports:

After those tiny blood spots are tested for a list of devastating diseases, some states are storing them for years. Scientists consider the leftover samples a treasure, both to improve newborn screening and to study bigger questions, like which environmental toxins can harm a fetus’ developing heart or which genes trigger childhood cancers.

But seldom are parents asked to consent to such research — most probably do not know it occurs — raising privacy concerns that are shaking up one of public health’s most successful programs. Texas is poised to throw away blood samples from more than 5 million babies to settle a lawsuit from parents angry at what they call secret DNA warehousing. A judge recently dismissed a similar lawsuit in Minnesota. [...] Read more »

Lisa M. Austin and Trudo Lemmens at the University of Toronto have written, “Privacy, Consent, and Governance.” The abstract:

Many discussions of health information privacy in relation to biobanks focus on the question of informed consent and, in particular, on why the future of biobanking likely requires the acceptance of some derogation from the traditional standard of informed consent to medical research. Following Neil C. Manson & Onora O’Neill’s recent work on informed consent as a “waiver,” we argue in this paper that the role of consent can be thought of in a narrower but still highly principled manner which is consistent with how consent is dealt with in tort law. Using this conception, we defend the position that the traditional standard of informed consent to participate in a biobank can be met but only where there is a governance structure ensuring consistent information practices and policies across multiple future research projects. We also argue that specific research uses of research samples and associated data in the biobank do not necessarily require informed consent but do require a governance structure that can regulate privacy risks such as the risk of re-identification. We thus distinguish consent at the outset of the collection and no-consent for future use, with both requiring a governance structure in order to protect the important interests at stake. In our conclusion we suggest that the legal and ethical debates regarding biobanking must shift from an obsession with consent and focus more closely on the elements of good governance in order to move away from compromises and back to the principled protection of research subjects.