California and your DNA: Is it a healthy relationship?

Posted by Jessica Cussins March 16, 2015
Biopolitical Times
Baby's foot

98% of all babies born in the United States have a tiny prick of their blood screened for a few serious diseases within the first few days of their lives. This test has been hugely successful at catching and beginning early treatment for inherited diseases such as sickle cell anemia and severe combined immunodeficiency.

Pressure is now mounting on multiple fronts to take advantage of this wellspring of potential genetic information. In the past, some states, most notably Texas, have gotten in trouble for their willingness to give it up for uses with which many parents are uncomfortable.

Now, attention has turned to California. In an article in U-T San Diego, the Council for Responsible Genetics’ Jeremy Gruber points out that while 19 states store these samples for more than two years, only California and a few other states keep them permanently and rent them out to researchers for a fee.

While the state’s Department of Public Health asserts that the samples are anonymous, we’ve been learning over and over again that DNA is rarely truly anonymous.

For example, the UK Department of Health finally acknowledged in correspondence with The Guardian that the genomic information in the 100,000 Genome Project will not actually be anonymous, but “pseudonymised” – though they have continued use of the former term publicly because apparently “the term ‘pseudonymisation’ is not widely understood.”

In the US, each state is rapidly building its criminal DNA database, in some cases using DNA from people never convicted of a crime. In an article in The Sacramento Bee, Jeremy B. White reports on growing concern about outside pressure to find new ways to access genetic data, by whatever means necessary. Jennifer Lynch, a senior staff attorney at the Electronic Frontier Foundation (EFF), asked “are we going to get to the point where law enforcement says, ‘Well, we have this giant repository with the information of everyone born in California in the last 30 years, and that’s a huge treasure trove’?”

It’s not an entirely abstract concern. Earlier this month, the Supreme Court sided in favor of letting a conviction stand that had been made using DNA collected from an interrogation-room chair.

In a brief to the Court, the EFF warned that "allowing police the limitless ability to collect and search genetic material will usher in a future where DNA may be collected from any person at any time, entered into and checked against DNA databases, and used to conduct pervasive surveillance."

Even if newborn DNA is never explicitly shared with police enforcement, Assemblyman Mike Gatto, D-Los Angeles believes “it’s only a matter of time before there’s a high-profile hack.” Gatto has created a bill (AB 170) to help parents regain agency over the fate of these samples. The bill would enable parents to choose to have their babies’ sample destroyed immediately after its intended use.

But the bill wouldn’t necessarily do enough if parents aren’t properly informed. Gruber has found that the majority of people don’t see any written materials explaining what will happen with their newborn’s sample, and that in California, consent to long-term storage and third-party use is simply assumed unless parents take the initiative and put their dissent in writing. He points out that newborn screening and storage tend to be exempt from state genetic privacy laws, so improved transparency will be critical to preventing misuse.

Previously on Biopolitical Times: