State Holds Hearing on Infant Blood Samples

On Monday the House Committee on Public Health held a five hour hearing on the state’s policy regarding blood screenings for newborn babies. The committee must make recommendations for how the state should obtain informed consent from parents for the screenings.

Andrea Beleno was the lead plaintiff in a lawsuit against the state of Texas after she and others found out that since 2002 the state has been taking babies' blood samples, not just for screening against more than two dozen illnesses, but for research and bartering.

"Parents don't get the ability or the information to give informed consent. It's an opt-out program instead of an opt-in which is just not good enough," says Beleno.

The group won the lawsuit which forced the state to destroy more than 5 million samples. Now the House Committee on Public Health must come up with recommendations for new legislation on the matter.

"We run the gamut of value for research vs. the need for privacy and informed consent, and I think somewhere we'll have to find that balance," said Lois Kolkhorst, Public Health Committee Chairwoman.

The issue at hand is how consent forms for parents should be worded and how thorough they should be.

"Are we truly informing parents that the blood of your child can be used in research in the future?" added Kolkhorst.

After blood samples are tested they are sometimes used for research to help maintain the quality of tests administered and new tests.

"To make sure we have better tests and we develop new tests because we have inherited disorders we don't have test for," says Dr. David Lakey, DSHS Commissioner.

It was revealed the samples were also being bartered for medical supplies and some samples were given to the Department of Defense for more research.

"We want it to be an opt-in not opt-out program. Right now they'll take your babies blood and do what they want with it unless you opt-out," says Wayne Krause, with the Texas Civil Rights Project.

That's one recommendation made by Wayne Krause with the Texas Civil Rights Project, he addressed the committee on items to keep in mind when drafting a new law.

In the end it will be up to lawmakers to decide how to best inform parents. They will take up during the next legislative session.