Research advance directives: protection or obstacle?

Abstract

This study assessed how many adults completed a research advance directive and the preferences indicated on the completed forms. The authors analyzed all 2,371 adults admitted as inpatients to the NIH Clinical Center from March 14 to Sept. 13, 2000. Overall, 11% of adult inpatients completed a research advance directive. Of those who specified preferences, 13% were not willing to participate in future research should they become unable to consent, 76% were willing to participate in research that might help them, 49% were willing to participate in research that would not help them and posed minimal risk, and 9% were willing to participate in research that would not help them and posed greater than minimal risk. Proposals to allow cognitively impaired adults to participate in research only with a formal advance directive could block important research. More flexible approaches should be considered to protect these individuals.