Class action filed over newborns' blood

AUSTIN (KXAN) - A class action lawsuit has been filed against the Texas Department of State Health Services and its Commissioner, David Lakey, M.D. by parents whose infants’ blood was secretly stored and possibly used in research without permission.

The suit filed by the Texas Civil Rights Project is the second filed relating to the leftover blood spots obtained under the mandated Newborn Screening Program. DSHS had stored approximately five million leftover samples without the parents' knowledge or permission.

To settle the first suit , DSHS agreed to destroy all samples retained without consent and post a list of research on the DSHS website that used any samples.

A KXAN investigation last year found although DSHS website disclosed at least 8,800 samples used in research, hundreds of thousands of samples were provided to outside entities including for-profit pharmaceutical or medical device companies . A majority of the samples appear to have been sent to Perkin Elmer and other companies, as well as to bioMerieux, Inc . as part of a barter for lab supplies . Internal e-mails describe how pricing was set .

DSHS contracted with Texas A & M to store the samples. It charged $15 per sample when provided for research.

The lawsuit filed Wednesday requests those samples be accounted for and destroyed, among other things.

The lead plaintiff, Jeff Higgins, strongly objected to the use of baby blood samples in government research and a project to create 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.

His attorney, Jim Harrington, pointed to a discussion between state officials and the legislature during the March 13, 2009 House Public Health Committee Hearing, in which the Biochemistry and Genetics Branch Manager in the DHSH Laboratory Services Section, Susan Tanksley denied the samples were used for law enforcement purposes. State Rep. John Davis asked Tanksley, “It’s not used for that purpose?” Tanksley responded, “That’s not currently used for that, no. That’s not our intention.”

But records show that twice the s tate provided samples to the Armed Services Institute of Pathology to use build a DNA database to aid in criminal investigations.

The Department of State Health Services was asked to make a comment on the suit. Following is its response:

We have not been served and therefore have not seen the lawsuit. But based on what we’re hearing, this lawsuit is nothing new. The Texas Civil Rights Project sued us before about bloodspot storage and use, and that issue was resolved and settled last year, with the Texas Civil Rights Project receiving funds for legal fees. The state spent countless hours responding to their concerns in good faith, and we had come to a resolution that we all agreed on, with the state destroying the bloodspots in question. Unfortunately, based on media reports, it appears they have decided they want to double dip back into this issue with baseless assertions, including the false assertion that there is DNA in a federal database.

Without seeing the lawsuit, we find it best not to comment further.

Carrie Williams, Press Officer, DSHS