Published on November 8, 2012 at 6:45 AM
The destruction of these samples may be detrimental to the highly effective state newborn screening programs but could also prevent important medical breakthroughs by making the research impossible, according to Lewis and her co-authors, Amy McGuire, JD, PhD, and Michael E. Scheurer, PhD, of Baylor College of Medicine, and Robert Green, MD, MPH, of Brigham and Women's Hospital and Harvard Medical School.
"In the future, newborn screening blood samples could be a major contributor to a better scientific understanding of how our genes impact our health over the course of our lifetime, for diseases ranging from heart disease to cancer," Lewis says. "But the research cannot be done if the samples are destroyed."
The authors agree that the privacy concerns of parents are valid. The larger issue standing in the way of DBS research, the authors write, "is the erosion of trust in the research enterprise caused by violation of the basic ethical principle of respect for persons, as perceived by the parents."
Education should be a cornerstone of polices related to the retention and use of DBS, the authors write, "so that the public can learn about and better understand the potential benefit of research" using these important samples. "In this way, the loss of a valuable resource can be prevented and the public trust in the research enterprise can be restored."
Source Johns Hopkins Berman Institute of Bioethics