The Great Baby DNA Vaults

States have significant discrepancies in their treatment of genetic privacy. In a new case out of Minnesota, parents are challenging a Minnesota state law that allows the state to store blood samples of their newborn children without their permission. These samples, called “bloodspots”, are being stored across the country. Texas has stored over four million samples alone, and Michigan is creating a “neonatal biobank” in Detroit, hoping to turn the city into a hub for biomedical research. Good luck- at $19k per home, Detroit could attract doctors and scientists deep in grad school debt.

Lest anyone doubt the magnitude and government support of such projects, the National Institute of Health itself is funding a project aiming to create a “virtual repository” of samples from around the country. There are, of course, positive medical research benefits to storing these samples. Sharon Terry of the Genetic Alliance claims that the stored samples “offer us the beginnings of a national blood bank to understand disease at an early age and follow people longitudinally over time.” A Twin Cities article notes that other uses include validating the accuracy of newborn screening and deciphering how genes and environmental factors interact.

From a civil liberties, or “creepiness test”, you have to wonder whether good intentions trump the government freely messing around with your DNA in experiments. If identifying information is stripped from the samples (it is currently removed in “most cases”, whatever that means), that clearly reduces the concern that the information can be misused. Stanford professor Hank Greely notes, however, “Just because you don't have a name or Social Security number doesn't mean you can't identify it. Once we start using DNA for more and more things like regular medical records, somebody could do a cross-check and say whose blood it is.”

This leads us back to yesterday’s post about what will happen when this information inevitably falls into the hands of health insurance companies, employers, or law enforcement agencies. After all, law enforcement agencies are already on the prowl for DNA fingerprints, rendering Greely’s cross-checking fears a reality for millions of Americans.

States have reacting with varying levels of sensitivity to concerns from parents and bioethics groups. New York, in case readers are planning to have kids any time soon, is a consent-heavy state. Consent from parents is required to administer DNA testing, and samples are presumptively destroyed unless the parent authorizes their use for medical research. Any parent going through this process should probably read all related paperwork extra carefully. Consent is only an unwitting signature away.

A University of Michigan poll showed that 72% of parents would be “somewhat unwilling” or “very unwilling” to have their baby’s blood used for medical research without their permission (56% were “very unwilling”). Two thirds of those individuals were against storage in general. Sounds like a lot of dissenters.

I do not want to sound opposed to opportunities for major medical research that these samples might provide. I also don’t want to sound overly paranoid about “the government” possessing this information. This site simply roots for bioethical common ground to keep pace with scientific advancement. What I am opposed to, however, is a clandestine process that keeps parents in the dark about what their childrens’ DNA is being used for, how it is being stored, and who can potentially access that information. How about if these measures were followed:

1) All parents must opt in to both genetic testing for diseases and the retention of that information (as the New York statute requires).
2) All samples being used for medical research must be heavily scrutinized by regulatory authorities and ethical boards, and not like SEC regulating either. Like, real regulatin’.
3) Samples have all identifying characteristics removed (whatever that is worth).
4) Transferring any samples to third parties must be prohibited, and the penalties for infractions sufficient to deter.

In researching this issue, I found one organization that is vocally opposing DNA storage- the Citizens’ Council on Health Care. Given their frontpage shout out to Senator Tom Cobourn and their videoclip of the Glenn Beck show, it seems like their concern is first and foremost that Evil Obama will steal your genetic information. That’s obviously not the angle we want to take here, and but there’s no reasons progressives can’t be involved in this debate from the libertarian angle as well. I welcome your thoughts on this topic. It’s a big one, so we’re sure to be following up on it in the future.

Below is a link to each of the 50 states’ privacy and consent laws relating to the genetic testing of newborns:
http://www.ncsl.org/IssuesResearch/Health/NewbornGeneticandMetabolicScreeningLaws/tabid/14416/Default.aspx

As a postscript, one article that was very helpful used to be located at this hyperlink:
http://www.twincities.com/ci_12730489?nclick_check=1
The link no longer loads, however.