Results of a web-based survey suggest that patients prefer to be asked for permission to participate in observational and randomized research evaluating usual medical practices. However, patient attitudes regarding consent and risk disclosure may be in opposition to regulatory guidance being drafted by the U.S. Office for Human Research Protections (OHRP).
Researchers surveyed 1,095 U.S. adults sampled from an online panel and an online convenience river sample to determine their attitudes about risks and preferences for notification and consent for research on medical practices. The survey results suggest strong support for research that compares usual clinical practices to determine the best ways of treating a particular condition and willingness to participate in such research. Respondents favored being asked for permission to participate in research, regardless of whether it affects treatment decisions. The patients were willing to make tradeoffs between imposing full consent requirements if more elaborate notification or approaches to consent would prevent research from being conducted. These results seem to be in opposition to proposed OHRP guidance. The research is being published in Annals of Internal Medicine.
Take the patient survey at http://www.annals.org/article.aspx?doi=10.7326/M15-0166.