The Wall Street Journal takes a look at the privacy risks that can arise from people voluntarily donating their DNA for research or other reasons. There have been several recent controversies over the unknowing use of individuals’ DNA reasons beyond what was stated when the samples were taken. Arizona State University recently settled a lawsuit by the Havasupai Indians. DNA samples that were given to university researchers to study the tribe’s high rate of diabetes were also used — without their consent, tribe members say — “to study many other things, including mental illness and theories of the tribe’s geographical origins that contradict their traditional stories,” reported the New York Times.

A few months ago, Texas announced that, as part of a lawsuit settlement agreement, it would destroy five million blood samples taken from babies and used for research without their parents’ consent. The blood was originally gathered to screen for birth defects. The Texas Tribune later revealed that Texas officials also “were turning over hundreds of dried blood samples to the federal government to help build a vast DNA database.”

The Journal reports:

At the Minnesota State Fair [...] you can stop by the University of Minnesota’s building and give samples of your and your children’s DNA for the university’s Gopher Kids Study.

As the Minneapolis Star Tribune reports, researchers are collecting information, including the genetic kind,  to see if the fair is an effective way to recruit and stay connected with study subjects. (Families are told to return for follow-up for the next two years.) Eventually researchers want to recruit thousands of kids in an attempt to study “what genes are involved in making a child grow and develop normally,” according to the study’s website. Read more »

In May, it was revealed that the University of California at Berkeley was asking incoming freshmen to voluntarily (and confidentially) submit DNA samples so that it can check “for three genes that help regulate the ability to metabolize alcohol, lactose and folates” because “students with certain genetic markers may be able to lead healthier lives by drinking less, avoiding dairy products or eating more leafy green vegetables.” At the time, I said that I was glad that the program was voluntary and confidential, but it was still troubling because there are easier and less-invasive ways to determine if someone is allergic or intolerant of alcohol, lactose or folates. Individual genetic data is not needed to teach students about responsible drinking or healthy diets. Genetic testing seems unnecessary, and it is too easy to see how quickly this could lead to mission creep. “Why don’t we test for something else, since we already have the data?” I noted several recent controversies over the unknowing use of individuals’ DNA reasons beyond what was stated when the samples were taken.

Now, the Los Angeles Times reports that Berkeley is changing its DNA collection program, though it still is requesting genetic data from incoming freshmen and transfer students.

In response to a state Public Health Department ruling on how DNA samples should be handled, UC Berkeley scientists reluctantly abandoned the idea to have freshmen and transfer students individually and confidentially learn about three of their own genetic traits. Instead, only collective results for all the 1,000 or so participants will be available and discussed at the orientation seminars next month. Read more »

The New York Times reports on the issue of genetic privacy as it relates to so-called “familial searching” of DNA databases. This type of search is controversial because the “near-match” person is not suspected — but that person’s relatives are. (Last year, George Washington law professor Jeffrey Rosen had an excellent article about increasing pressure for the expansion of familial searches of DNA databases.)

Although Britain has been using the technique for years, familial searching in the United States is the Botox of criminal investigation. Early-adopter states like California and Colorado have tried it, like it and plan, where appropriate, to use it again. The wait-and-see states are holding out while they consider the potential side effects and longer-term social ramifications. [...]

But the immediate concern is that kinship searches could produce a long list of convicted felons who are only partial matches to an unidentified suspect. The risk is that the police, while looking for a suspect’s family members, might intrude on people who have not committed a crime. Some lawyers call it guilt by genetic association. Read more »

The BBC reports on law enforcement developments in the United Kingdom and Europe:

Home Secretary Theresa May says the UK will opt in to an EU order allowing foreign police to be given evidence held in the UK. The European Investigation Order makes it easier for police to investigate suspects living in each other’s states. [...]

Critics predict forces will end up wasting resources working on unjustified investigations that breach civil liberties.

Under the current system, EU police forces who want to investigate a suspect in another member state ask their counterparts for help through special agreements called Mutual Legal Assistance. [...] Read more »

The Department of Health and Human Services has published a notice of proposed rulemaking to modify the HIPAA privacy, security and enforcement rules. The department said:

The Health Information Technology for Economic and Clinical Health (HITECH) Act, enacted as part of the American Recovery and Reinvestment Act of 2009, is designed to promote the widespread adoption and standardization of health information technology, and requires HHS to modify the HIPAA Privacy, Security, and Enforcement Rules to strengthen the privacy and security protections for health information and to improve the workability and effectiveness of the HIPAA Rules. Read more »

The Associated Press reports on a proposed expansion of DNA data-gathering in New York.

Gov. David Paterson has proposed roughly doubling New York’s DNA database to include samples from even low-level offenders, making it the first in the nation to so broadly collect and use this evidence to solve crimes and exonerate people wrongly convicted.

New York’s law would require adding about 48,000 samples a year to a laboratory system that state officials say is capable of handling the extra work, with no current backlogs. [...]

State police now have DNA samples from 356,000 people convicted of felonies and certain misdemeanors, including petty larceny and endangering the welfare of a child. The database began in 1996 with the genetic material from killers and sex predators, and has been expanded three times. Read more »