Public prefers limited informed consent
A team of University of Iowa (UI) researchers conducted a study to determine people's preferences with respect to informed consent for biobanking. Forty-one percent of people surveyed and 54% of those in focus groups were in favor of the broad approach to providing consent.
The study, "Active choice but not too active: Public perspectives on biobank consent models," was published in the online edition of the journal, Genetics in Medicine.1 It was led by Christian Simon, PhD, associate professor of bioethics and humanities in the Department of Internal Medicine at the UI Roy J. and Lucille A. Carver College of Medicine, Iowa City, IA.
The study involved 751 telephone surveys and seven focus groups with the public who were randomly sampled from counties across Iowa. More than 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%) of survey participants rejected the idea of deriving and banking samples without first obtaining informed consent. Sixty-seven percent of those surveyed and 63% of those who participated in the focus groups said they would prefer an opt-in consent process.
Study participants then were asked to consider whether they would prefer a broad description of how their samples and health information might be used in future research, whether they wanted to control what research their samples and health information are used in via "menu-type" consent forms, or whether they wanted to be contacted for their permission every time their samples and health information became eligible for research.
Broad consent was preferred by more people when compared to the menu or study-specific types of consent. Forty-one percent of people surveyed and 54% of those in focus groups were in favor of the broad approach to providing consent.
The study was supported by the UI Institute for Clinical and Translational Sciences, the UI Carver College of Medicine, and the UI vice president for medical affairs, all in Iowa City, IA. The study was conducted with the assistance of the Center for Social and Behavioral Research at the University of Northern Iowa, Waterloo.
- McGowan M, Burant C, Moran R, et al. Patient education and informed consent for preimplantation genetic diagnosis: Health literacy for genetics and assisted reproductive technology. Genetics in Medicine 2009; 11:640-645.