New mom Andrea Beleno learned from a newspaper account that blood samples of her toddler were being stored in College Station without her consent.
"I was really quite horrified," the 33-year-old said Tuesday, when it was announced that a settlement had been reached to destroy 5.3 million such samples the state had been keeping. "There was no notification. ... It was a completely secret program."
In a room in the Texas A&M Health Science Center rest blood samples of nearly every baby born in Texas from 2002 to May. Under the settlement reached Dec. 14, the state has 120 days to dispose of them.
The nonprofit Texas Civil Rights Project filed a federal lawsuit in San Antonio in March asking that the samples be destroyed because parents were not asked for consent and the sampling violated "fundamental privacy rights."
"We're not against research at all," said James Harrington, director of the Texas Civil Rights Project, shortly after holding a press conference in Austin explaining the terms of the agreement. "All we're saying is, you ought to give the parents the ability to consent or not consent. The Fourth Amendment is very clear. This is a seizure. You're taking people's blood without any consent."
Harrington's group helped Beleno and four others file the lawsuit. It named as defendants Nancy Dickey, president of the College Station-based Texas A&M Health Science Center, and David Lakey, commissioner of the Texas Department of State Health Services, which administers the Newborn Screening Program.
Dickey could not be reached for comment Tuesday, but her office released a statement saying that the center is pleased to have reached a settlement.
"We are saddened, however, that a superb database has been lost," the statement said. "This database could have continued to shed light on causes of congenital birth defects and potentially led to preventive measures saving thousands of infants and their families the distress these defects cause."
All of the 400,000 or so babies born in Texas each year go through the Newborn Screening Program, which checks for 28 disorders, such as cystic fibrosis and sickle cell disease.
Blood is taken from the baby's heel twice -- between 24 and 48 hours after birth or before leaving the hospital and one to two weeks after that -- and sent to a department lab in Austin.
Though the screenings have been occurring since the 1960s, the state began storing the samples in 2002.
The Health Science Center's only role in the process was storage and pulling specimens when they were requested, said Allison Lowery, a spokeswoman with the Texas Department of State Health Services.
She also said that the samples were never sold to any third parties, a concern voiced by critics of the program.
There was no legislative decision in 2002 to collect the samples, Harrington said. Lowery said she was unclear about how the decision was made to begin storing samples.
A law went into effect May 27 stating that parents could opt to have their child's sample destroyed after screening, Between then and Nov. 2, about 6,900 parents chose that option, Lowery said, and during that time about 240,000 babies were born in Texas.
Beleno said she has a history of diabetes in her family, and her mother is a breast cancer survivor. She said she probably would have consented because she understands the value of large-scale research databases.
"The problem I had was my kid's blood was being stored not only without my consent, but without my knowledge. The scope of it is something you'd expect a conspiracy nut to come up with: they are keeping the blood of every kid in the state. It's crazy if you think about it," she said.
The involvement of her son, Joaquin, now 13 months, enraged her. But the Austin resident said she would have been upset regardless.
"We only have the rights that we're willing to stand up and fight for," she said. "If we're not willing to stand up for our rights, then maybe we don't deserve them."
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