Since 2002, Texas' Department of State Health Services has been storing samples of newborn babies' blood for research on birth defects. Although it sounds like reasonable research, the Department failed to clear one tiny detail - consent. In other words, if you've had a baby in Texas since 2002, there is a good chance the State has some of your little one's DNA stored somewhere in a Texas A&M University lab. Creepy.
Thankfully, last week the Department announced it would destroy the blood samples (totaling to over 5 million) as part of a settlement of a federal lawsuit filed by the Texas Civil Rights Project. The lawsuit alleged that the State violated the constitutional protections against unlawful search and seizure. As a result, any blood sample collected without consent will be destroyed. Additionally, the Department must publish a list of all the research projects that used the blood samples. That should be an interesting read...
This is so scary to me. Not only is it an unlawful seizure, but it is the biggest privacy breach I can think of. The state has actual DNA - proof that Child A will develop X genetic disease later in life. What if that information somehow ended up in the wrong hands? A health insurance company for example. Exactly the horrific situation from the movie Gattaca (you should watch it...even if you don't like Ethan Hawke). Basic plot: as a newborn you are screened for diseases and then discriminated against depending on your "superiority."
For a State that makes such a big deal out of conducting open meetings, it seems extremely suspect that they would keep this scheme a secret. If they aren't doing anything wrong or controversial with the blood, why would they keep it so hush hush? I'm sure millions of parents would consent to donate the blood to the cause as long as they knew where it was going - in other words, I have a hard time believing that getting consent would significantly hinder any sort of valid scientific innovation.
Thoughts? Please post comments!
~AnDrea
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