Center Director Dr. Tom Tomlinson has a new article in the July-August issue of IRB: Ethics & Human Research.
Abstract: When donating leftover biological samples to a biobank for use in medical research, people generally are asked to give a broad consent. This allows their samples and associated medical information to be later used without any further consent. Although risks to donors are virtually eliminated by deidentification of their samples, some donors may have concerns about the moral dimensions of research using their biological samples. We used an Internet survey of Michigan residents (N = 683) to determine the effects that information about future possible research uses has on people’s willingness to donate their biological samples under a broad consent. The presentation of research projects that might raise moral concerns for some individuals reduced the number of respondents willing to give a broad consent and reduced confidence in their decision among those still willing to donate. Even so, the great majority (> 85%) remained willing to donate. We discuss the implications of these findings for the consent and information-sharing policies of biobanks.
Read “Do People Care What’s Done with Their Biobanked Samples?” by Tom Tomlinson, Stan A. Kaplowitz, and Meghan Faulkner via thehastingscenter.org.
MSU Library access may be required to view this publication.
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.