I've known about this story since KXAN did a report last week, and now the Austin America- Statesman is covering it, as well. Not only did the Texas Department of State Health Services give newborn blood samples to organizations for data-collecting purposes, but they also traded them to companies in exchange for supplies. So, in essence, the DSHS profited from the "sale" of these samples without parental knowledge or consent.
Again, I'm not opposed to the intended purpose of newborn screening, as I know it provides invaluable information and can save lives. I am opposed to a state agency blatantly distributing private information, previously taken without the consent of parents, and receiving payment for it, even if it was not technically monetary. This is a huge breach of privacy and public trust.
A hearing on this entire issue is scheduled for later this month.
On a personal note, my husband and I are extremely conflicted by this new report, especially after being assured that Babycake's samples from 2008 were destroyed. Our second son is due in July, and while we have the option to opt-out of having his samples stored, we're considering refusing the tests completely, since it doesn't appear that we can fully trust the state right now.
