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. House Bill 1672 allows the State to keep anduse the samples for research, but requires parents be informed andgiven the option of having their children’s leftover bloodsamples destroyed after screening. The state has 60 days to destroythe blood cards after receiving the official notification form fromparents.
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 Use and Storage of Newborn Screening BloodspotCards information provided to parents, identifyinginformation linking a child to a particular bloodspot is notallowed outside of the Department of State Health Services withoutadvance consent of the child’s parent or guardian unlessotherwise provided by law.
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
In 2006 and 2007, then, Senator Obama, filed legislationthat would create a national DNA database. The same bill was filedby Sen. Patrick Kennedy in 2008 . The bills required parental consent,but all three died in the Senate.
Study finds support by some parents
Not everyone is opposed to collecting, storing and using DNAfrom the newborn screening program for later use. A study by the University of Michigan foundthat when asked for consent, only 24 percent of parents objected tousing their newborns blood samples for research. That number jumpedto 72 percent of parents who were somewhat or very unwilling whenasked if the samples could be used without permission.
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.
In a last-minute surprise late Monday, U.S. Rep. Steve Stockman filed paperwork to challenge fellow Texas Republican and powerful incumbent John Cornyn for the U.S. Senate next year.
University of Texas System regents say they're planning to discuss the employment of Austin campus President Bill Powers, who has sparred with lawmakers and critics over his job in recent years.
Just in time for the holidays, Texas is making sure everyone remembers that wishing someone "Merry Christmas" is now protected by law in its public schools.
A 8-year-old was killed while standing outside of a vehicle which lost control during the icy conditions, DPS said.
Because of her position as Travis County District Attorney, the deputies who arrested, booked, and restrained Rosemary Lehmberg last April admit they were worried her threats were legitimate.
American Airlines has emerged from bankruptcy protection and US Airways culminated its long pursuit of a merger partner after the two completed their deal Monday to create the world's biggest airline.