DNA Deception

[sonias]

Texas Tribune 2/22/10
DNA Deception
When state health officials were sued last year for storing infant blood samples without parental consent, they said it was for medical research into birth defects, childhood cancer and environmental toxins. They never said they were turning over hundreds of dried blood samples to the federal government to help build a vast DNA database — a forensics tool designed to identify missing persons and crack cold cases.

A Texas Tribune review of nine years' worth of e-mails and internal documents on the Department of State Health Services’ newborn blood screening program reveals the transfer of hundreds of infant blood spots to an Armed Forces lab to build a national and, someday, international mitochondrial DNA (mtDNA) registry. The records, released after the state agreed in December to destroy more than 5 million infant blood spots, also show an effort to limit the public’s knowledge of aspects of the newborn blood program, and to manage the debate around it. But the plaintiffs who filed the lawsuit never saw them, because the state settled the case so quickly that it never reached the discovery phase.

(snip)
But Jim Harrington, the civil rights attorney who filed the blood spot lawsuit last year on behalf of five Texas parents, believes DSHS meant to deceive the public. When he was negotiating with state officials, he says, he specifically asked what research the blood spots were being used for — and there was no mention of the federal mtDNA project. He says he was stunned by how quickly the state settled the lawsuit. “Sometimes there are slam-dunk cases, but I’d never seen this kind of case settle without discovery,” says Harrington, director of the Texas Civil Rights Project. “This explains the mystery of why they gave up so fast.”

(snip)
MtDNA is extremely valuable in forensics because it’s easier to find and extract from human cells than nuclear DNA. In addition to blood, it can be identified in hair, bones, teeth and damaged or degraded biological samples and can be used to identify victims of mass disasters or to solve long-since-cold criminal cases. But it’s only as valuable as its sample size. AFDIL scientists, in conjunction with the research branch of the Justice Department, approached Texas in a $1.9 million effort to expand the country’s mtDNA database — part of the President’s DNA Initiative launched under George W. Bush. The researchers wanted “anonymous and maternally unrelated” blood samples from Texas Caucasians, African-Americans and Asians — and from Hispanics and Native Americans in particular — to round out their genetic record. The researchers also took samples from prison populations and infant blood screening in other states, including Florida, Minnesota and California. They did not pay Texas for the samples.

Typical Perry Enron style DSHS administration dealings. Just move the process to the feds, in essence breaking the spirit of the lawsuit. I commend Jim Harrington and the Texas Civil Rights Project for defending all Texas families from this big brother intrusion.

And hats off to the Texas Tribune for doing actual news journalism! Bravo!

:applause:

[sonias]

1. Newborn blood went to national database; attorney wants consent or samples destroyed

AAS -Salud blog 2/22/10
Newborn blood went to national database; attorney wants consent or samples destroyed

Disclosure that some newborn blood samples in Texas went to the U.S. military for possible use in a national database prompted a lawyer who settled a lawsuit with the state over the blood samples to demand that consent be obtained to use the information from the samples or they be destroyed.

The Department of State Health Services never mentioned that it had sent about 800 samples to the military in the 14 month-period I discussed this issue with them. Nor was it in the few documents I received from the state health department about the program.

The military also was not mentioned to Jim Harrington, director of the Texas Civil Rights Project, who settled a lawsuit in December with the state over its collection and indefinite storage of the samples since 2002.

But today’s Texas Tribune, an online news service that covers state government and politics, describes the distribution of the samples to the military to help create a national mitochondrial DNA database.

Health department spokesman Carrie Williams said the national database would identify “ethnic or ancestral origins of unidentified corpses using mitochondrial DNA.” It is believed that the DNA could help identify missing persons but she could not provide details on how the database would work using blood spots from newborns.

[sonias]

2. Suit possible over baby DNA sent to military lab for national database

AAS 2/22/10
Suit possible over baby DNA sent to military lab for national database
State says blood specimens were sent for research that will help identify missing persons.

An Austin lawyer threatened to pursue a new federal lawsuit Monday after learning that some newborn blood samples in Texas went to the U.S. military for potential use in a database for law enforcement purposes.

The Department of State Health Services never mentioned the database to Jim Harrington, director of the Texas Civil Rights Project, who settled a lawsuit in December with the state over the indefinite storage of newborn blood without parental consent, or to the American-Statesman, which first reported on the little-known blood storage practice last spring. Harrington said he thought another suit was likely unless the health department destroys the information obtained from the blood samples or obtains consent.

"This is the worst case of bad faith I have dealt with as a lawyer," he said Monday.

Jerry Strickland, a spokesman for the Texas attorney general's office, which represented the health department, fired back. "During this litigation, Harrington was provided accurate answers to the questions he asked," he said.

Of course the A.G.'s office is trying to make Jim Harrington out to be the bad guy. I would trust Jim Harrigton and his staff over any guy in Greg Abbott's office to protect the people of Texas. If anyone is trying to make this political it's Greg Abbott's office. :grr:


Sonia

[sonias]

3. Jim Harrington's letter to Perry and Abbott

Last year, our office represented a group of parents, who successfully concluded litigation in federal court about the secretive misuse of infants’ blood spots gathered at the time of birth for infant screening. The Texas Department of State Health Services collected and released those blood samples for research (so the public was told) and stored them at Texas A&M. By the end of the litigation, there were about 5 million such samples, for which no parental consent was obtained.

As a result of the lawsuit, the Legislature passed a law that set up an informed consent mechanism for parents so they could decide whether to allow their children’s blood to be stored indefinitely and used for research. The state was required to destroy all earlier samples for which it had not attained or could not attain parental consent.

Now, it has come to our attention today through news reports and agency documents released under the Public Information Act that the TDSHS has been supplying those blood samples taken from newborn babies to the military, not just for research, but so that the military can build a mitochondria DNA data base, which can be used in part for law enforcement purposes.

This is an alarming development and raises the specter of the federal government building an international DNA data base.

This has been done surreptitiously and without consent of the parents. In fact, no information was given to them that this might happen and indeed the documents released today show a deliberate intent at deception by state officials over whom you have authority.

We write you because this has gone on during your watch as Governor and Attorney General, respectively, and needs to end on your watch as Governor and Attorney General.

We ask that, within ten (10) days of this letter, you retrieve from the federal government all the blood samples that Texas has sent to the U.S. military and retrieve and destroy all information taken from those samples, unless the state or federal officials produce documents showing written consent from the parents, authorizing such use of their children’s blood samples.

This is a critical issue that touches on the both the state and federal governments’ violation of the fundamental right of personal privacy and integrity – a right fully protected by both the Texas Constitution and the Fourth Amendment to the United States Constitution.

Go get'em Jim!

[sonias]

4. DNA Destruction (continuing the saga)

Texas Tribune 3/9/10
DNA Destruction
(snip)
When The Texas Tribune discovered last month that state health officials had turned hundreds of baby blood spots over to a federal Armed Forces lab between 2003 and 2007 to build a mitochondrial DNA database — and that the agency hadn’t been upfront about it with lawmakers or the public — any chance for saving the blood spots fizzled out. All 5 million blood spots were sent to a Houston-area incinerator last week.

"If there was any way the blood spots were going to be saved, the whole thing fell apart at that point," said state Sen. Bob Deuell, R-Greenville, who asked the agency for a full briefing on the newborn blood screening program last year but was never told about the federal study. "When this came out about these specimens going to the military, I said, 'We’ve lost this one.'"

Texas has screened infants for birth defects for decades, pricking their heels and collecting drops of blood on paper cards. Starting in 2002, the state health department began storing the blood spots for "research into selected diseases" but never notified parents of the change. When a group of parents learned last year that their babies’ blood was being stored without their consent, they sued DSHS. The agency quickly settled the lawsuit, agreeing to destroy all existing blood spot cards. Meanwhile, the Legislature passed a law allowing all future de-identified blood spots to be stored for research while installing a far more rigorous parental consent process.

(snip)
Critics say that’s not the only reason. They say DSHS conveniently settled the lawsuit before the trial went to the discovery phase, meaning the documents on the federal DNA study were never disclosed to the plaintiffs. (The Tribune obtained the documents on the federal project — designed to build a forensics tool to help identify missing persons and crack cold cases — through Texas open-records laws.) “Unfortunately, that of course confirmed the plaintiffs' worst fears,” said Peel, founder of the nonprofit advocacy group Patient Privacy Rights.

:kick: