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Privacy Law Blog

The New Frontier: “Genetic Exceptionalism” and The Battle Over Newborns’ DNA

Posted in Medical Privacy

The popularity of crime dramas on primetime television schedules has made certain aspects of genetic testing commonplace and uncontroversial.  However, as science continues to advance at an exponential rate, and as technology and innovation have invaded the realm of individual privacy rights, individuals’ genetic make-up are likely the next frontier.

At least 32 states have genetic privacy laws on the books.  These states have taken steps to protect genetic information beyond the protections given to other types of health information.  This is referred to as “genetic exceptionalism,” which calls for special protections for genetic information due to its predictive, personal and familial nature and other unique characteristics.  Generally speaking, state genetic privacy laws restrict parties (such as insurers or employers) from taking a particular action without consent.  These laws cover a broad range of issues, including:

  • Requiring personal access to genetic information;
  • Requiring consent for performing tests, obtaining or accessing genetic information, retaining genetic information, and/or disclosing genetic information;
  • Defining genetic information or DNA samples as personal property; and
  • Providing for specific penalties for genetic privacy violations.

Genetic privacy rights have been a controversial issue in law enforcement for many years now. The FBI and several states have announced that they are vastly expanding their collection of DNA to include millions of people who have been arrested or detained, but not yet convicted (before, the federal government only maintained DNA samples from convicts). In line with that expansion, in May 2009 a California court ruled that police can forcibly take DNA samples during arrests without violating the Fourth Amendment’s prohibition of “unreasonable searches and seizures.” In reaching that ruling, the judge found that DNA sampling was analogous to taking fingerprints, and is merely a technological progression from the more traditional methods of identification.

In a recent article, the Washington Post highlighted a new genetic privacy controversy stemming from a fairly standard procedure.  U.S. hospitals routinely collect a few drops of blood from more than four million newborn babies each year under state programs that require all newborns be screened for dozens of genetic disorders.  These programs enable doctors to save lives and possibly prevent permanent neurological damage by diagnosing and treating discovered conditions early.  New parents are usually informed about the tests, and can opt out if they object.  They are not, however, usually informed about what becomes of their child’s “blood spot” (slides on which the drops of blood are stored) after their initial consent is given.

 

Parents in Minnesota and Texas recently discovered that these states have been storing their babies’ blood spots and making those samples available to scientists for medical research without obtaining the their permission.  The parents are challenging this practice, bringing attention to the issue at a time when there is increasing interest in using the collected blood spots to study diseases.  The National Institutes of Health, for example, is funding a $13.5 million, five-year project aimed at creating a “virtual repository” of blood samples from around the country.  Right now, each state has its own rules determining what becomes of the blood spots after they are tested.  For example, Washington D.C. discards them after a year, while Virginia saves them for up to ten years, but does not allow the samples to be used for research.  Maryland began storing blood spots in 2004, and is considering making its 350,000 samples available to researchers.  At least nine other states store the blood spots indefinitely.

 

State officials say that research projects requesting use of the blood spots are only approved after undergoing scientific and ethical review, and all identifying information is removed from the samples given to researchers.  However, states can still link each sample back to an individual child, which worries some parents, especially with the advances in genetic and electronic data banks linking medical information from a variety of sources.  Discovery of new genetic markers means that having someone’s DNA can lead to inferences being made about that person’s future health, behavior, and possibly family relationships.  Another fear is that the blood spots, if left in state governments’ hands, will be shared with national and international government agencies, thereby vastly expanding the potential for access to an individual’s DNA.

 

These concerns have prompted several states to begin obtaining the parents’ consent before allowing the blood spots to be used for research and honoring requests to destroy the samples.  Even if all the states were to adopt such measures, there is the open question of what to do with the blood spots already on file.  Neither the issue of the blood spots nor the larger issues of genetic privacy are susceptible to quick or easy resolution – we will likely be examining the contours of this new frontier for years to come. Stay tuned . . .

 

[This blog post was co-authored by Joyce Men, a summer associate at Proskauer Rose LLP and a student at the University of Texas School of Law.]