The Texas Newborn Blood Spot Saga Continues
Contributed by Allison Williams Dobson of the Center for Genomics and Society at the University of North Carolina at Chapel Hill.
The Texas Department of State Health Services (DSHS) could soon face a new federal lawsuit in light of the discovery that it sent 800 anonymous newborn blood samples to a U.S. military DNA lab in 2003 and 2007. As discussed in a post by Adam Doerr on February 2, Texas Civil Rights Project lawyer Jim Harrington successfully negotiated a settlement in 2009 to have DSHS destroy 5.3 million newborn blood samples because it did not obtain informed consent from parents to use the samples for research. Now DSHS has come under criticism over samples it had already released for approved research.
The Texas Tribune reported last Monday under the headline “DNA Deception” that its review of nine years’ worth of e-mails and internal documents, obtained under state sunshine laws,1 revealed a DSHS agreement to help the military build a national mitochondrial DNA (mtDNA) database. The Armed Forces DNA Identification Laboratory claims a legitimate research purpose for the newborn DNA samples—to improve the identification of missing person remains through analyses of highly stable mtDNA.2 Because mtDNA generally lasts longer in a wider variety of tissues than nuclear DNA, it is also more likely to be recovered from particularly old or decayed remains.
Worse than the discovery of the mtDNA project, in further allegations reminiscent of “climategate,” the Tribune claimed that the communications evidence demonstrates an effort by DSHS “to limit the public’s knowledge of aspects of the newborn blood program, and to manage the debate around it.” According to the Tribune, the e-mails demonstrate that “in 2003, when the agency started to release blood spots for outside research, officials knew they had a parental consent issue on their hands—but tried to avoid it.” For example, the Tribune’s web site reproduces an e-mail from a researcher arguing against a press release describing the research (pdf): “This makes me nervous. Genetic privacy is a big ethical issue & even though IRB approval is required for use of the spots in most situations and great care is taken to protect the identity of the spots, a press release would most likely only generate negative publicity.”
Public perception of science could sustain further damage from the exposure of scientists or their advocates trying to keep quiet about what they were doing because they thought the public would not approve. In response to the new information, Harrington has alleged bad faith on the part of DSHS during the earlier settlement negotiations. He threatened a follow-up lawsuit over the military research use, based on DSHS denials during the negotiations of any “law enforcement” access to the samples.3
It is unclear what relief plaintiffs would be seeking in a new suit. DSHS is already required to destroy the samples and has stated that it will not ask researchers to return samples already released for research. The researchers are obligated to destroy the samples when their studies are completed. Still, these developments serve as yet another reminder that scientists and supporting policy makers need to do a better job of maintaining honest and open dialogue with the public about their research activities.
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1 State Sunshine Laws: The Public Information Act of Texas is a series of laws designed to guarantee that the public has access to public records of government bodies at all levels in the state. Texas Government Code, Chapter 552, was enacted in 1993 and has been amended several times since. It gives citizens the right to access records at various levels of Texas government, without a requirement to declare the purpose for reviewing those records.
2 Human mtDNA is a small circular molecule – only approximately 16.5 thousand bases of sequence as compared to millions of bases of sequence in each of the linear nuclear chromosomes. Much of the mtDNA sequence is identical for all humans, but there are two short hypervariable regions that may be used to identify ancestral origins, as noted by DSHS spokeswoman Carrie Williams. The inheritance of mtDNA is maternal, and in the 1990s a team of British scientists famously exploited this property, along with the strict paternal inheritance of the Y chromosome, to discover a very high probability that Thomas Jefferson fathered at least one of the children of his slave, Sally Hemings. Nature. 1998 Nov 5;396(6706):27-8. Jefferson fathered slave’s last child.
3 Reasonable people might disagree about whether the stated goal of identifying human remains constitutes a “law enforcement” purpose. DSHS spokeswoman Carrie Williams explained, “Our understanding of mtDNA is that it’s not used to pinpoint exactly who a person is, but can help determine origins.” She also contended that their “intentions were good ones,” and pointed out in another report that the project has been listed on the DSHS website for weeks.
