OTHER DATABASE ABUSES IN PUBLIC HEALTHCARE
Five parents this week filed a federal lawsuit in San Antonio U.S. District Court against the Texas Department of State Health Services (TDSHS), Commissioner David Lakey, M.D., Texas A&M, and Texas A&M Vice Chancellor for Health Affairs Nancy Dickey, M.D., claiming they have unlawfully and deceptively collected blood samples from their children at time of birth and stored those samples indefinitely for undisclosed research purposes, without plaintiffs’ knowledge or consent. – Texas Civil Rights Project
State sued over babies’ blood:
Parents say storing samples without consent is illegal
By Mary Ann Roser
Four parents and a pregnant woman sued the state health department Thursday, claiming that its policy of storing infants’ blood indefinitely for possible medical research is unconstitutional.
The nonprofit Texas Civil Rights Project in Austin filed the suit on the parents’ behalf in U.S. District Court in San Antonio. The suit also names Texas A&M University, which stores the blood for the Department of State Health Services.
The suit claims the state is violating constitutional protections against unlawful searches and seizures as well as state privacy laws. It seeks to stop storage of blood samples without parental consent and asks that samples be destroyed unless the state gets parents’ consent.
Since 1965, the state health department has been tasked with screening newborns for birth defects and other disorders under a law that does not require parental consent. In 2002, the health department decided to store the blood samples, so they could be used for possible research and other purposes, such as calibrating lab equipment, department spokesman Doug McBride said.
The state has since amassed 4.2 million samples at the A&M School of Rural Public Health in Bryan.
After the American-Statesman wrote about the practice Feb. 22, some parents said they were angry that their child’s blood was now state property without their consent and wanted it returned or destroyed. They feared the blood spots might be used someday to discriminate against their child.
“The screening (for disorders) is fine,” said James Harrington, director of the Texas Civil Rights Project. “It’s what they’re doing afterwards.”
The state health department has said the samples could one day help scientists find causes or cures for diseases, adding that infant’s identities are not on the paper cards holding the blood spots.
Earlier this month, it said it would consider destroying samples from parents who sent letters, provided it could find a legal way to do so. Harrington called the response inadequate.
“If you want to talk about Big Brother, this is one of its worst incarnations,” Harrington said at a news conference while flanked by three of the plaintiffs.
McBride declined to comment on the suit, and officials at Texas A&M could not be reached for comment — although the school was experiencing power outages Thursday, according to a message on one official’s voice mail.
Andrea Beleno, 33, of Austin said when her son was born Nov. 4 at Seton Medical Center, she had no idea that blood was drawn, much less stored.
“I think the screening program is good. They test for things that can make babies really sick initially,” she said, holding her son.
“And if they’d asked me if I would consent for this blood to be used for specific medical research, … I would have probably said yes.”
But Beleno said she would have said no to storing his blood indefinitely, just as she would refuse to let her own be stored “forever and ever.”