Is your baby’s blood in a DNA database?
"Invading my privacy, already?"
Since I have hippie parents and was born at home with my father acting as midwife, I don’t have to worry about infantile invasions of privacy. But if you had your baby the “normal way” in a hospital, you might have reason for concern.
Many hospitals take blood samples from babies when they’re born in order to screen for genetic disorders (Yay! Science is cool!). In some states, the hospitals keep those blood spots on file for years or even indefinitely, and hand them over to researchers for their use (Wah! Not cool, say privacy advocates.).
The lawyers at Proskauer Rose recently posted an article on this topic on the firm’s excellent privacy law blog.
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.
Awesome. I thought they only had those in vampire movies!
There are several things not awesome about this in the eyes of parents though. Often, they did not consent to their baby’s blood being put on file, and these samples — and all the genetic information contained therein — could be traced back to their children.
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.
via The New Frontier: “Genetic Exceptionalism” and The Battle Over Newborns’ DNA : Privacy Law Blog.
This is not a little tiny thing affecting just a few people in fancy hospitals. According to the Washington Post, Minnesota has 800,000 blood spots on file; Texas has over 4 million; and Michigan has over 3.5 million, just to name a few states.
Stockpiling millions of blood samples without consent is a highly questionable practice. Dr. Dudes, can’t you just test the blood for genetic disorders and then, if consent hasn’t been given for archiving it, throw it out?
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Ms. Hill,
State government public health records may indeed be able to link a particular blood sample to an individual child. However, a researcher using this data cannot. I have accessed these sorts of databases myself, it is just a bunch of letters and numbers. Variables such as age, gender, ethnicity, &c are all coded but nothing about name or address. Such information is not only removed, it would get in the way of the work of researchers, it would clutter up the database with useless information. None of this is really new, state and local governments have maintained disease registries for decades. People who might want to use genetic information for nefarious purposes won’t needed genetic disease registry blood samples to do what they need to do.
P.S. No one maintains a “DNA” database, there are databases of genetic diseases which is not the same thing. For example, almost every state tests newborns for Thyroid Stimulating Hormone (TSH). If this is high, the blood is then tested for thyroxine (T4). If that is low, the infant has hypothyroidism. This may transient or permanent. If it is the latter the infant has a very serious health conditions and needs to immediately have T4 supplements. The DNA of the newborn is not in the database.
Thanks for that clarification, David. It’s good to hear from someone who’s actually worked with these types of archives.
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Thanks both to you and your commenter for providing more information. I’ve got a discussion of this topic going on my blog and would love your thoughts.
http://musingsbytams.blogspot.com/
Thanks and have a great day!
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