Texas ordered to destroy five million blood samples illegally taken from babies without consent

The subject of a recent federal lawsuit, routine blood samples legally taken from Texas newborns to screen for disorders and diseases were illegally being kept by the Texas Department of State Health Services without parental consent. Found to have begun holding and retaining such blood samples since 2002, the agency is being sued on behalf of the children's parents by the Texas Civil Rights Project.

Legislation passed in May 2009 allows for blood samples to be retained indefinitely but allows parents to opt out if they wish to do so. However the lawsuit maintains that all blood samples obtained prior to the legislation be destroyed in cooperation with the law at that time. While the Health Department has agreed to destroy the samples, which have been preserved as blood spot cards, it is requesting permission to keep the blood samples of 400 children whose blood tested positive for certain atypical disorders.

The lawsuit is demanding no financial restitution for the state's crimes, citing only privacy concerns and the principle of holding the government accountable when it violates the rights of its people. According to Andrea Beleno, an Austin mother and plaintiff in the suit, people must stand up and oppose governmental lawlessness otherwise nobody will.

An agreement was reached on December 14 whereby the Center must destroy all samples within 120 days unless the state receives written permission to retain specific samples. The Health Department must also inform the parents who were plaintiffs in the suit how their children's blood samples were used and if any financial transactions took place during the research process. All projects must also be published on the agency's newborn screening website.

Spokesmen from Texas A&M's Health Science Center, the facility where the blood cards were being stored, expressed relief that a settlement has been agreed upon and the lawsuit dismissed, but it mourned the loss of what it described as a "superb database" that would have helped to prevent future birth defects in children.

The Health Department has agreed to comply fully with the new law concerning blood sample retention and is assuring parents that all information will be kept confidential and privacy maintained. The agency hopes that new parents will be willing to voluntarily allow their children's blood samples to be retained for research purposes that could lead to novel new treatments for serious medical problems.