Newborns' Blood Used To Build Secret DNA Database

Kanel notes a summary up at New Scientist of an investigation by a Texas newspaper revealing that Texas health officials had secretly transferred hundreds of newborn babies' blood samples to the federal government to build a DNA database. Here's the (long and detailed) article in the Texas Tribune. From New Scientist: "The Texas Department of State Health Services routinely collected blood samples from newborns to screen for a variety of health conditions, before throwing the samples out. But beginning in 2002, the DSHS contracted Texas A&M University to store blood samples for potential use in medical research. These accumulated at rate of 800,000 per year. The DSHS did not obtain permission from parents, who sued the DSHS, which settled in November 2009. Now the Tribune reveals that wasn't the end of the matter. As it turns out, between 2003 and 2007, the DSHS also gave 800 anonymized blood samples to the Armed Forces DNA Identification Laboratory to help create a national mitochondrial DNA database. This came to light after repeated open records requests filed by the Tribune turned up documents detailing the mtDNA program. Apparently, these samples were part of a larger program to build a national, perhaps international, DNA database that could be used to track down missing persons and solve cold cases."

Comments

to remove some confusion:

[rritterson]

Let me explain to you why this is not as scary and outrageous as it would first seem. The summary and article are very good ones, but don't provide enough context for a non-expert to understand how serious/non-serious it is:

As the summary indicates and RTFA seems to confirm, DSHS collected the samples for use in anonymous human medical research. This is done all of the time, as another poster commented (and gave the great example of HeLa cells). Typically, an oversight committee reviews a great many details about your research plan and ensures your collection methods are sufficiently anonymous, and your research is done in such a way as to avoid revealing the identity of the sample if at all possible. (Usually, users are separated from the database maintainers, and the users never even know the identities of the samples).

As one example, co-worker of mine receives nasal swabs of infected children in Nicaragua, under the auspices of WHO and CDC. He screens them using very expensive diagnostic assays that aren't viable in the clinic but are useful for basic research. His lab has discovered several new viruses in these samples that weren't previously discovered due to geographic bias in clinical cohorts (you sample the people most likely to be able to pay for the cure). He never knows the names of the children, just age, symptoms, and previous infections. He has to renew his certification to work with human samples once a year to ensure he knows all relevant legal and ethical regulations, and must update his research plan regularly, and receive annual approval from the oversight committee, even if he doesn't change anything. (And must stop all research if he procrastinates and certification lapses) However, without being able to use these samples, both basic research and clinically relevant research would be hampered. DSHS probably operates in the same way.

The issue here is that these samples were passed to the federal government and they used them to build a DNA database. People sued primarily because DNA is considered very personal information in this country and having the government track you using it is a current moral panic/boogeyman. (Partially warranted, partially not). In this case, however, they were using mitochondrial DNA, which is separate from your normal chromosomal DNA. Because sperm have no mitochrondia, all of your mitochondrial DNA is passed matrilineally (i.e. from mother to child-- sons cannot pass it on at all). Because you only have one copy, it does not undergo recombination during sperm/egg generation, and thus changes very very slowly. As a result, people like the National Geographic Society are using the information to trace human migration patterns throughout history using mitochondrial sequence information (google it). However, because it's so similar from person to person ---it is unlikely to be able to be traced directly back to you or identify you the way your chromosomal DNA is--- instead, it can tell where your mother's mother's mother's mother's mother's mother came from, i.e. your ethnicity. With enough samples it may even be able to tell whether you are a recent immigrant, a long term american, etc. This means that, using this database as a source, police may one day collect mtDNA from a crime scene and know they are looking for a person from Eastern Europe that is 1st-3rd generation american. That is, it can be used to narrow suspects, but can't be used to identify you directly.

So, in the end, the information (at least to me, as a molecular biologist) is relatively harmless and perhaps even good, in balance. However, given the serious objections people would likely have if they had known their information would be used in this way, the oversight committee should have required additional consent to use and collect this information for each person's sample they collected (and insured the people who gave consent gave informed consent). That would have avoided the mess entirely, and been more ethical.