AUSTIN, Texas – Texas health authorities will destroy as many as four million blood samples taken from babies without parental consent and stored indefinitely for scientific research.
The Texas Department of State Health Services announced Tuesday it would destroy the samples after settling a federal lawsuit filed by the Texas Civil Rights Project. The project, acting on behalf of five plaintiffs, had sued the Texas Department of State Health Services and Texas A&M University.
The lawsuit alleged that the state's failure to ask parents for permission to store and possibly use the blood — originally collected to screen for birth defects — violated constitutional protections against unlawful search and seizure. Under the settlement overseen by a San Antonio federal court, the blood samples collected without parental consent must be destroyed by early next year. It also requires the department to publish a list of all research projects that used the blood specimens.
The plaintiffs, citing fears their children's private health data could be misused, said there are at least four million newborn blood samples being stored at Texas A&M. Calls placed to Texas A&M were not immediately returned. Health officials could not immediately provide a figure for the total number of samples in its possession.
Andrea Beleno, 33, was one of the parents who sued the state. She said she was "stunned" to learn that blood samples taken from her son, born in Austin in November 2008, were being stored indefinitely for unspecified research projects.
"You have to give permission for them to give your kid formula in the hospital," Beleno said. "I don't understand why you don't have to give permission for the state to keep your kid's DNA."
Texas has been collecting blood samples for decades to screen for at least 27 different birth defects and other disorders. By law the blood could be taken without consent by hospitals, birthing centers and midwives.
The Department of State Health Services established a policy in 2002 in which it began setting aside the blood "spots" after the screenings are done and allowing some of it to be used for research. Before that, the blood was discarded after a certain interval.
This year the Texas Legislature tightened up the procedures, providing opt-out policies for parents, extending privacy guarantees and implementing controls over any scientific research that uses the samples. At issue in the lawsuit settlement are the millions of samples collected and stored before the law took effect in May.
"As a result of this settlement, DSHS will destroy all bloodspot cards received by the department before May 27, 2009," the health services agency said in a written statement. "We will continue to be very sensitive to the privacy concerns of parents and the confidentiality of all medical information."
Under current law, the department can still use the blood samples for quality control and disease research as long as parents don't object. The department screens about 800,000 newborn blood specimens each year.