EAST LANSING, Mich. With millions of newborns' blood samples stored in a Michigan bio-bank, researchers are working to determine public attitudes toward the practice of using the blood spots for medical research.
The Michigan State University study will help drive public policy decisions and develop an improved consent process for the state's bio-bank, known as the Michigan BioTrust, said Ann Mongoven, an assistant professor in MSU's Center for Ethics and the Humanities in the Life Sciences.
The project is funded by a five-year, $1.1 million grant from the National Institutes of Health. The MSU grant is part of a larger research project led by Sharon Kardia at the University of Michigan. The Michigan BioTrust's Community Values Advisory Board is collaborating with researchers.
Michigan's bio-bank is a tissue repository of bloodspots left over from Michigan's newborn screening program, which tests all babies for genetic and metabolic abnormalities. While the bio-bank offers public health research opportunities, it also presents ethical challenges, said Mongoven, who also has an appointment with the Department of Pediatrics and Human Development.
The new study aims to develop, implement and evaluate a new model of community engagement to help guide the ethical and policy questions that arise when using blood stored in the bio-bank for research.
"The Michigan Biotrust initiative raises serious issues for both individual research participants and for communities," she said.
Those include: Is it acceptable to use someone's blood in research without that person's knowledge and consent? If research is done on de-identified human tissue, should the donor be considered a research subject? How can one truly 'consent' for as yet unknown future research? What should be done if research reveals information that could be clinically useful to a specific research subject? Could groups as well as individuals be affecte
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Michigan State University