Biobanks are repositories for tissue samples, usually in the form of blood or saliva or leftover tissue from surgical procedures. These samples are collected and used for future research, including genetic research. They may be linked to personal health information regarding the sample donor. People who are eligible to donate these samples and researchers who want to use them face important questions with respect to whether and how informed consent should be obtained for sample and health information collection and use.
A team of University of Iowa researchers led by Christian Simon, Ph.D., associate professor of bioethics and humanities in the Department of Internal Medicine at the UI Roy J. and Lucille A. Carver College of Medicine, conducted a study to determine people's preferences with respect to informed consent for biobanking. The study, "Active choice but not too active: Public perspectives on biobank consent models," was published ahead of print in last month's online edition of the journal, Genetics in Medicine. The study involved 751 telephone surveys and seven focus groups with English-speaking members of the public who were randomly sampled from counties across Iowa. Over half the study participants were female.
Most study participants had not heard of a "biobank" before, but when it was explained to them what biobanks were and that they could help advance research on genetic and nongenetic aspects of disease, most study participants were enthusiastic.
The majority (95 percent) of survey participants rejected the idea of deriving and banking samples without first informing and asking patients for their permissionobtaining their informed consent.
"This speaks to the premium many people place on being informed and having a choice about participating in research," Simon said.
Participants were also asked whether they would prefer to opt in or out of biobank participation.
|Contact: Molly Rossiter|
University of Iowa Health Care