Research advance directives: protection or obstacle?
OBJECTIVE
This study assessed how many adults completed a research advance directive and the preferences indicated on the completed forms.


METHODS
The authors analyzed all 2,371 adults admitted as inpatients to the NIH Clinical Center from March 14 to Sept. 13, 2000.


RESULTS
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.


CONCLUSIONS
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.
Muthappan
Palaniappan
P
Department of Clinical Bioethics, NIH, Bldg. 10, Rm. 1C118, Bethesda, MD 20892, USA.
Forster
Heidi
H
Wendler
David
D
D000328:Adult; D024362:Advance Directive Adherence; D016223:Advance Directives / Q000523:psychology* / Q000706:statistics & numerical data; D001290:Attitude; D003072:Cognition Disorders / Q000523:psychology; D005260:Female; D006760:Hospitalization; D006801:Humans; D007258:Informed Consent / Q000331:legislation & jurisprudence / Q000592:standards*; D008297:Male; D008875:Middle Aged; D009316:National Institutes of Health (U.S.) / Q000592:standards; D010344:Patient Advocacy / Q000331:legislation & jurisprudence / Q000592:standards; D010358:Patient Participation; D019727:Proxy / Q000331:legislation & jurisprudence / Q000523:psychology; D012108:Research Personnel / Q000523:psychology*; D035842:Research Subjects / Q000523:psychology*; D012307:Risk Factors; D011795:Surveys and Questionnaires; D014481:United States