Tom Tomlinson, PhD, recently received a research grant from the National Human Genome Research Institute, NIH. Titled “Public Preferences for Addressing Donors’ Moral Concerns about Biobank Research,” the project is being led by Tomlinson and co-PI Raymond De Vries, PhD, of the University of Michigan.
To date, the dominant research ethics framework has focused on protecting research participants against the risks to their welfare that might be created by their participation in health research. This 3-year project is concerned with a different kind of “risk”—the risk that donated, de-identified biospecimens and health information might be used in research that is contrary to the donors’ moral, social or religious beliefs or values. How much do such concerns matter to people’s decisions whether to contribute specimens to research biobanks using a “blanket consent,” that gives one-time permission to use the contribution in any way the biobank deems acceptable? How should information about biobank-supported research projects be provided to potential donors? These and other questions will be answered using a nationally representative survey, coupled with a series of democratic deliberations that ask members of the public to develop recommendations for biobank policies regarding these issues. For more information, click here.
This project continues a line of research that Dr. Tomlinson began in 2010.