Blood samples left over from newborn screening tests are a genetic treasure trove which should be available to researchers, argue bioethicists in the journal Science Translational Medicine.
Nearly 4 million American newborns undergo mandatory screening every year, and privacy-related and ethical concerns about what happens to the remaining blood spots could hamper research.
The use of these residual dried blood samples (DBS) has been controversial, as parents in Minnesota and Texas have sued their states for retaining them without parental permission.
The settlement in the Texas suit resulted in the destruction of 5.3 million archived blood samples. The Minnesota Supreme Court ruled that informed consent will be required for the blood samples to be retained for research. Minnesota now plans to start destroying leftover samples when newborn screening is completed.
This narrow view of privacy is hampering research, the bioethicists complain. "The potential value to biomedical research for improving both public health and individual health must be part of the public discussion about what should happen to residual dried blood samples from newborn screening," says Michelle Huckaby Lewis, of the Johns Hopkins Berman Institute of Bioethics.
"The research community must advocate for policies that support the retention of these samples and their use in biomedical research," Lewis said. "We should be the generation that recognizes the potential value of these samples and commits to developing them as a resource to promote public and individual health. The scientific community has a responsibility to the nation and its citizens to use these resources ethically, but also to the fullest extent possible to improve the health of our citizenry." ~ GenomeWeb Daily News, Nov 8