Advocates Raise Concerns Over Storing, Sharing of DNA Samples

Privacy advocates are raising concerns about DNA samples of about 16 million California residents that were taken at birth to test for health disorders and now are being stored indefinitely in a San Francisco Bay Area warehouse, the Los Angeles Times reports.

Details of DNA Storage

For the last 30 years, nearly every infant born in California has had their blood taken to screen for 80 medical conditions, such as sickle cell anemia and cystic fibrosis.

According to the Times, the samples are kept in a biobank indefinitely. California is one of 20 states that maintain control of the samples after they have been screened.

The samples can be sold to genetic researchers. California is one of just four states that charge a fee for the samples.

The samples are de-identified and assigned a number that can be used to find identifying information from another source. However, names are not given to researchers.

Privacy Concerns

However, some stakeholders have concerns about the privacy and use of the DNA samples.

Assembly member Mike Gatto (D-Glendale) said that "whenever data [are] stored, data can fall into the wrong hands."

Jeremy Gruber, president of the Council for Responsible Genetics, said, "Throughout the process, from the point of screening to the point of storage to the point of third-party use, public understanding, knowledge and consent is almost completely" nonexistent.

Push for Protections

Gatto said that he plans to amend a bill (AB 170) -- which would allow blood donors to have their samples destroyed at age 18 -- to change the consent rules of the DNA screening program.

Specifically, Gatto wants to require the state to receive written consent from parents before the samples are stored and sold for research. According to Gatto, parents already can opt-out, but many are unaware of that option.

In addition, Gatto said he might consider including language in the legislation that would impose financial penalties against researchers if DNA data in their possession are accessed by an unauthorized user or otherwise improperly used.

Reaction

Jennifer Puck, a professor of immunology at UC-San Francisco's Department of Pediatrics, said requiring parental consent could be "very damaging" to genetic research. Puck said, "The parents who don't suspect anything is wrong with their kids are going to say no, because they are not going to understand" how information could help medical research.

Meanwhile, Robert Nussbaum, head of UCSF's Division of Medical Genetics, said that the benefits of using the data for research "outweigh the risks." He added that extra restrictions are unnecessary because it likely is impossible to guarantee absolute security in any situation (McGreevy, Los Angeles Times, 2/1).