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Infant Blood Sample Program Questioned on Ethics, Violations of Privacy

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Every newborn baby born in the U.S. gets a heel prick so that doctors can obtain a sample of blood and test it for devastating diseases. This procedure is so common, in fact, that parents are seldom asked to consent to the research on their babies’ blood—most parents probably don’t even know that the heel prick occurs. However, one state is prepared to throw away blood samples from 5 million babies to settle a lawsuit from angry parents who say that their family’s privacy is at stake.

The lawsuit, filed in 2009 by the Texas Civil Rights Project on behalf of five parents in Texas, marks the first time the infant blood-testing program has ever been confronted on ethical grounds. The lawsuit originally sought to stop the Texas Department of State Health Services from collecting blood from newborns and indefinitely storing it without parental notification or consent. The lawsuit has already resulted in a new law, which requires the health department to present a detailed, written disclosure at the time of birth so that a parent can opt out of the program at that time or within 60 days afterwards. Additionally, the law also permits adults to withdraw consent and have their blood sample destroyed, even if their parent(s) gave consent at the time of birth.

Nevertheless, the last caveat of the lawsuit has yet to be resolved: what to do with the millions of blood samples already collected and stored without consent. The plaintiffs argue that keeping the blood violates their constitutional right to be free from unlawful search and seizure and fundamental privacy rights. Other states have already made moves to protect themselves from lawsuits similar to that brought against the Texas state health department. For example, Michigan just moved 4 million leftover blood spots into a new “BioTrust for Health” and is also planning an educational campaign to educated parents on the research potential of collecting infant blood samples and how families can opt out.

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  1. Barbara says:
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    The potential for the good in use of the miniscule amount of blood, which wouldn’t even fill a thimble, trumps the potential for inappropriate uses. Each state should set guidelines for the use of the samples that already exist. Parents could be asked if they want the samples saved for future use going forward. The blood spots could someday be used to find a gene that could save that child’s life or provide donor information for one to save the life of another.

    I think it is a good idea to save samples. Services are already available to parents, and people pay labs a good amount to freeze their babies’ cord blood samples for potential use for future disease, as leukemia, and serve as an identity resource for kidnapping victims.

    In general, labs are backed up with DNA samples, and the only people that would probably ever have time to look at the samples are grad students and researchers(i.e. use for proteomics studies).

    Some people are just paranoid and think the worst. Take the blood at birth, and then give parents the choice if they want it saved. To have a lawsuit for this is just frivilous and a waste of the taxpayer’s money and court time.