Class action filed over blood of newborns

A class action lawsuit has been filed against the Texas Department of State Health Services by parents whose newborn children’s blood was stored secretly and possibly used in research without informed consent. The suit is the second related to the leftover blood spots obtained under Texas’ compulsory Newborn Screening Program. The DSHS had stored around five million leftover samples without the knowledge or permission of the parents.

The DSHS settled the first suit by agreeing to destroy all samples kept without consent and to post a list of research that used any samples onto its website. An investigation by a local TV station last year found that although the DSHS website divulged at least 8,800 samples used in research, hundreds of thousands were supplied to outside entities including for-profit medical device or pharmaceutical companies.

The lawsuit filed last week requests that those samples be accounted for and destroyed, among other things. Lead plaintiff Jeff Higgins objected strongly to the use of blood samples from babies in governmental research and a project for creating a DNA database. “There is no circumstance in which I want my daughter's genetic material or DNA to be stored or used by any of military or paramilitary organizations in the country,” said Higgins.

What if databases like these are not available to researchers? One controversial solution was voiced recently by bioethicist Eric Juengst, of the University of North Carolina at Chapel Hill. Because the promise of personalized medicine can only be realized if there is a huge amount of data about genetic differences, many people need to participate in clinical trials. Why not a voluntary "genetic service corps," a bit like the Peace Corps, in which citizens serve as subjects in biomedical research studies? ~ Austin News, Dec 8; Charlotte Observer, Dec 12

MORE ON THESE TOPICS | clinical trials, genetic privacy

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