Public Prefers Limited Informed Consent Process

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.

The study, "Active choice but not too active: Public perspectives on biobank consent models," was published last month's. 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 permission—obtaining their informed consent. Participants were also asked whether they would prefer to opt in or out of biobank participation. "This distinction is important because opt-in consent typically involves more detail, more time and a more active decision on research participation when compared to an opt-out process," Simon explained.

Sixty-seven percent of those surveyed and 63 percent of those who participated in the focus groups said they would prefer an opt-in consent process.

"Nonetheless," Simon said, "a substantial minority -- 18 percent in the surveys and 25 percent in the focus groups -- said they would prefer an opt-out process, primarily because they felt it provided at least some level of choice, involved less time for potential donors and fewer resources for the biobank, and would help with sample accrual and therefore also medical research and progress."

"Of course, there may be significant cost and logistic implications to creating such multiple options," Simon said. He said the study findings will provide a starting point for discussions about consenting patients to a new comprehensive tissue biobank at Hospitals and Clinics, which will house thousands of tissue samples for future research purposes. The tissue will be accessed for DNA as well as RNA, Simon said.


COMPAMED.de; Source: University of Iowa Health Care