The project has its roots in a state-mandated newborn screening program. The State requires that samples of infants’ blood be taken and tested for certain birth defects. Initially, this blood was discarded within 6 months to 3 years after the screening. But in 2002, TDSHS changed its procedure. It began storing and keeping the blood indefinitely, with the intent of using the blood for medical research. Today, about 4.2 million samples are being stored at Texas A&M University’s School of Rural Public Health.

Not a single parent has been officially notified that the State has permanent possession of their child’s blood.

The Statesman story prompted the Texas Civil Rights Project to file a lawsuit on behalf of five parents. The suit makes several allegations, including claims that fundamental privacy rights have been violated and that TDSHS conducted its research in violation of U.S. Department of Health and Human Services regulations. Those regulations contain several disclosure and parental consent requirements for research conducted on minor children.

The Statesman story also prompted Texas Representative Myra Crownover (R-Denton) to file a bill, HB 1672, that would cover up for . . . er, that is . . . provide legal authority for the TDSHS activities. Her initial bill, as presented to a House committee, seemed to be nothing more than a retroactive endorsement of TDSHS’s shocking abuse of power. Her bill did not add disclosure requirements. It did not provide a method by which parents could opt out of the research. It purely and simply gave TDSHS a legal excuse to continue violating privacy and parental rights.

Fortunately, sanity reigned among a few of her fellow Republicans, who practice the conservative principles that they preach. The bill was modified in committee and on the House floor. It passed the House with strong disclosure requirements and gives parents the ability to "opt out" of the research program. There is reason to hope that the bill will continue to improve on the Senate floor: Some are advocating the more parent-friendly "opt in" requirement, as opposed to the House’s "opt out" language.

In the meantime, a big question mark looms over the status of the already-collected 4.2 million samples. The Texas Civil Rights Project lawsuit is pending, but no official legislative action has been taken. But action should be taken immediately. TDSHS should be required to either destroy all 4.2 million samples or it should (at the very least!) be required to contact each parent and give them the opportunity to have their child’s blood samples destroyed.

This author and parent decided not to await formal legislative or judicial action. The Newborn Screening Lab, Texas Department of State Health Services (P.O. Box 149347, Mail Code 1947, Austin, TX 78714-9347) has received a formal demand that it destroy little Miss Ross’s blood samples. Other parents should send similar demands.

TDSHS’s actions are among the worst sort of governmental abuses. A government agency decided for itself that it wanted to keep a citizen’s private property (blood) and personal information (genetic codes). Its decision was impertinent, offensive, and outrageous. The government has no right to take and keep such information without so much as providing simple disclosure (to say nothing of obtaining permission). Parents across the state should be angry. They should demand that their rights be respected and that the currently existing samples be destroyed. They should expect their state representatives to look out for them in this regard.

Some representatives are already working hard on behalf of their constituents. There is more to do, but they certainly deserve praise for their actions to date. The other representatives who tried (and failed) to cover up TDSHS’s abuses should be ashamed of themselves. They failed in their obligation to side with their constituents and with the law. Voters should remember that dereliction of duty at election time.