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Public prefers limited informed consent process for biobanks
Date:6/28/2011

ion 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."

Study participants were then 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 either the menu or study-specific types of consent," Simon said. "However, if you were to lump together the people who said they preferred the menu and study-specific types of consent on the grounds that both these approaches promote more control over sample use than broad consent, the margin is not so impressive."

Forty-one percent of people surveyed and 54 percent of those in focus groups were in favor of the broad approach to providing consent.

Simon noted that some experts have suggested that more than one consent approach should be offered to people to allow for a diversity of consent preferences.

"Of course, there may be significant cost and logistic implications to creating such multip
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Contact: Molly Rossiter
molly-rossiter@uiowa.edu
319-356-7127
University of Iowa Health Care
Source:Eurekalert

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