Destruction of newborn screening left over samples may be detrimental to medical research

Published on November 8, 2012 at 6:45 AM · No Comments

The tremendous potential public health benefits of research with blood samples left over after routine newborn screening must not be lost amidst controversy and litigation, say medical and bioethics experts in a commentary published in the journal Science Translational Medicine.

"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, MD, JD, lead author of the commentary and Research Scholar at the Genetics and Public Policy Center 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."

Almost all of the 4 million babies born each year in the United States undergo mandatory screening that uses a small sample of blood to screen for certain medical conditions before the onset of symptoms, in many cases preventing needless suffering and death. The U.S. Centers for Disease Control and Prevention have hailed newborn screening as one of the most successful public health programs of the 21st century. Residual blood left over after the screenings is used for quality assurance purposes for state screening programs, but they also have been used for biomedical research.

Lewis notes that much of our current understanding about the genetic modifications that cause certain diseases - for example, some types of childhood leukemia - are a result of research using residual dried blood samples (DBS) leftover from newborn screening.

Lewis and her colleagues write, "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."

Some parents in Minnesota and Texas objected to the state's use of DBS without parental permission and sued the states' Departments of Health, claiming that the state had violated their constitutional right to privacy. In 2011, a settlement of the Texas litigation resulted in the destruction of 5.3 million archived blood samples. The Minnesota Supreme Court ruled that written informed consent was required to retain DBS and use them for research, and in January 2012 the Minnesota Department of Health announced plans to begin destroying the left over samples as soon as newborn screening is completed.

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