Parents seek destruction of leftover samples

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

Jared Yee
clinical trials
genetic privacy

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Michael Cook

Michael Cook edits BioEdge, a bioethics newsletter, and MercatorNet, an on-line magazine whose focus is human dignity. He writes from Sydney, Australia.

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