AUSTIN (KXAN) - When Andrea Beleno was expecting her first child, she neverdreamed his blood would become the focus of a federal lawsuit.
Neither did the other families who are suing the State of Texasto protect the medical privacy of their children.
Each year, more than 400,000 babies are born in Texas. State lawmandates that before newborns leave the hospital, his or her heelwill be pricked and five drops of blood are collected.
Two weeks later, their pediatrician collects another five dropsof blood. The blood cards are submitted to the Texas Department ofState Health Services as part of the Newborn Screening program. One or two dropsare used to screen for a list of serious medical conditions.
The parents are not objecting to the screening. They object towhat the state is doing with the leftover blood samples.
Beginning in 2002, the State began saving the leftoverspecimens, unbeknownst to parents and without their consent.
"It made me really mad that nobody asked me if they could keepmy sons DNA," said Andrea Beleno.
Her son’s DNA was among millions of banked samples storedat Texas A&M Health Science Center School of Rural PublicHealth.
"It makes me suspicious and I think there's really no reason forthe state to have a database of the blood of and the DNA of everysingle person who has been born here," said Beleno. "There's nolegitimate reason for that."
The state said there is a legitimate reason: Research.
According to court documents, the state admits some of the bloodsamples collected for the newborn screening program were used forother purposes, but said it was done in accordance with federal andstate law.
"The government still has to ask," said Boleno. "They can't justtake it. And everyone has the right to make that decision forthemselves."
Jim Harrington, an attorney for the Texas Civil Rights Project,who is representing Beleno and the other families in the federallawsuit, said it violates the Fourth and 14th Amendments of the U.S. Constitution.
”It’s a bad thing,” said Harrington. "You haveto consent to give up the right. And in this case it’s yourright of privacy and your kid’s right of privacy.”
The lawsuit prompted change in the Texas Legislature.
The form directs the state to destroy the card containing thedried blood spots, but does not insure any information gatheredfrom the generic material is deleted.
According to the
Patient privacy expert Dr. Deborah Peel saidthose words, "unless otherwise provided by law" create a hugeloophole.
"It's not secret, it means they can share it and use it forresearch for public health," said Peel. "There are many laws thatallows the use of samples, like newborn blood samples for publichealth uses and screening and so forth. So, no, you are notprotected. That allows all kinds of people to see it."
House Bill 1672 allows the stored samples to be used in researchif approved by what is called an Institutional Review Board.IRB’s are supposed to safeguard privacy and protect patients,but are not open to the public.
The IRB board appointed to oversee research on the storedbloodspots consists almost entirely of State employees. Harringtonsays that makes the process questionable.
"This is not a true independent professional review board," hesaid.
Perhaps most concerning, is the confidentiality clauses added tothe new law that were designed to protect the identity of thenewborns. The law states that reports, records and informationobtained or developed by the department are confidential and areexempt from the Texas Public Information Act, and are not subjectto subpoena.
In addition, anyone involved in the program, including stateemployees or employees of a contractor or subcontract can becompelled to testify in any kind of judicial proceeding as to theexistence or contents of any records, reports or information.
The law does not allow for public disclosure of information suchas who is involved and what kind of research is being conductedusing the stored blood samples.
Jim Harrington said that is a problem.
"The reason we brought the suit was because of their secret,surreptitious conduct and then they turn around and are doing theexact same thing again," said Harrington. "And every time, ofcourse, the government is not open and clear and transparent, itraises flags all over the place about what’s really going onand what are they really up to?"
The issue of retaining newborn screening samples is not uniqueto Texas. Other states are dealing with the same issues. Balancingprivacy issues with what is in the best interest of the public is afine line. The federal government has invested millions in regionaland national newborn screening collaborations.
National DNA Database
Study finds support by some parents
Not everyone is opposed to collecting, storing and using DNAfrom the newborn screening program for later use.
Andrea Beleno said she may have consented, if asked. But afterseeing how the State of Texas has handled the issue, her mind ismade up.
"For me and my family,” said Beleno, “No, you can'thave our DNA."
So far, more than 8,200 other families have made that samedecision to opt out of allowing the state to use theirchild’s genetic material.
Travis County District Attorney Rosemary Lehmberg heads to court this week as a defendant in a civil trial that could oust her from office.
Late Saturday night into early Sunday morning, a light band of freezing drizzle traversed the I-35 corridor eastward. With sub-freezing temperatures, even the light precipitation created major problems.
A 10-year-old was killed while standing outside a vehicle after the child's family was involved in a fender bender, DPS said.
Austin Police confirm they have located an 82-year-old women who went missing last night.
APD is responding to a 25 vehicle accident near the 5400 block of Ed Bluestein near Thurgood Ave.
A man is dead after being hit by several vehicles in the eastbound lane of Highway 71 Saturday night.