Up in Smoke: 5 Million Neonatal Blood Samples Incinerated

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An effort to avoid the pointless destruction of the millions of Guthrie cards maintained by the Texas Department of Health Services has come to naught. Plaintiffs who sued the department as well as privacy advocates initially were open to the idea of preserving all the cards with neonatal bloodspots for future research while seeking consent for their storage from millions of parents. [1]

However, this was not to be. After the state quickly settled the dubious lawsuit, an enterprising but inadequately informed journalist published Internet stories alleging that the department had turned "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" and that the samples "were forwarded along to the federal government to create a vast DNA database, one that could help crack cold cases and identify missing persons." [2] In her latest installment of this tall tale she continues to write that the samples will "help identify missing persons and crack cold cases." [1]

The suggestion that the U.S. military is using the samples to build a database to "crack cold cases" or to identify "missing persons" in this country is preposterous. To summarize a previous posting [2]: First, the research project is limited to mitochondrial DNA, which rarely is used in forensic investigations because it is not capable of providing specific identification. Second, AFDIL does not maintain any databases of DNA profiles to crack cold cases. Third, even if AFDIL were authorized to maintain a database of civilian DNA profiles for criminal investigations, a collection of nameless mtDNA sequences from de-identified samples would be pretty useless. Finally, the true purpose of the research is clear from "Federal MtDNA Paper" posted on the Tribune's website. The AFDIL paper explains that the research database, which cannot be used to identify individuals, simply allows geneticists to put estimates of random-match probabilities for mtDNA on a sounder footing. These estimates are necessary to understand the probative value of an mtDNA match in any criminal investigation or trial. They have nothing in particular to do with cold hits or missing persons.

In sum, the research database has virtually no meaningful privacy implications. Some parents might not want their children's blood samples used to improve the criminal justice system, but that alone is not much of a reason to destroy what the article calls a medical "treasure trove." The children's DNA is not going into any military or law-enforcement database for tracking down missing persons or cracking cold cases.

Yet, this fear apparently was the monkey wrench that jammed the effort to preserve the samples while seeking consent. Here are some excerpts from the latest news as described by the same journalist:

[T]he Department of State Health Services . . . agreed in December to destroy the blood spots, after a civil rights attorney and several Texas parents sued the state for storing them for research purposes without permission. But after the court settlement was signed, privacy advocates lobbied the agency for an alternate solution: a research database that would keep the blood spots intact while seeking electronic consent from parents. They got the go-ahead from some key lawmakers and from the lawsuit's plaintiffs, who pledged to void the settlement, but not from DSHS.

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 . . . 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, . . . "When this came out about these specimens going to the military, I said, 'We've lost this one.'"

. . . State health officials say Austin-based national patient privacy advocate Deborah Peel and Deuell, a physician, approached DSHS Commissioner David Lakey early this year about using electronic consents to save the 5 million existing blood spots from destruction. The agency reviewed the idea but never pursued it. . . .

Critics 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.

Peel said the state's decision not to seek a non-destructive solution is a shame. . . . "We were going to ... reach out to those 5 million families and let them know they had an alternative to having their blood spots destroyed," Peel said. . . .

Deuell said the impression he got from state health officials was that they feared they would be subject to litigation from other parents if they negotiated with the plaintiffs not to destroy the blood spots. . . . "They said, 'The plaintiffs are just three people out of 5 million. Who's to say somebody else wouldn't come back and file a new suit?'"

Harrington [plaintiffs' attorney] said that worry is "utter nonsense." He said both sides could have gone back to the judge to have a new settlement drafted -- one that would've protected the agency. "What's the harm in that?" Harrington asked. "We would have supplemented or amended the settlement. It would have been totally possible."

But once news broke that some of the blood spots had been turned over to the federal lab -- and that the state had no intention of destroying those samples -- the plaintiffs' offer was off the table. Instead, they have demanded that the state get the blood spots back from the federal government, or they'll file another lawsuit. . . . [1]

Maybe another lawsuit would be a good thing. With competent lawyering and journalism, the people of Texas finally might realize that none of their children's DNA has found its way into any DNA database for identifying anyone.

References

1. Emily Ramshaw, DNA Destruction, Tex. Tribune, http://www.texastribune.org/stories/2010/mar/09/blood-drive/

2. David H. Kaye, A Texas Tall Tale of "DNA Deception," Double Helix Law, Mar. 4, 2010 http://www.personal.psu.edu/dhk3/blogs/DoubleHelixLaw/2010/03/a-texas-tall-tale-of-dna-deception.html

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