Exploring the ethics of clinical research in an urban community.
OBJECTIVE
We consulted with representatives of an urban community in Washington, DC, about the ethics of clinical research involving residents of the community with limited access to health care.


METHODS
A semistructured community consultation was conducted with core members of the Health Partnership Program of the National Institute of Arthritis and Musculoskeletal and Skin Diseases. Three research case examples were discussed; questions and probes (a predetermined question or series of questions used to further investigate or follow-up a response) guided the discussion.


RESULTS
The community representatives who took part in the consultation were supportive of research and appreciated the opportunity to be heard. They noted the importance of respecting the circumstances, values, needs, and welfare of research participants; supported widely representative recruitment strategies; and cited the positive benefits of providing care or treatment to participants. Monitoring participants' welfare and ensuring care at a study's end were emphasized. Trust was a central theme; participants suggested several trust-enhancing strategies, including full disclosure of information and the involvement of advocates, physicians, and trusted church members.


CONCLUSIONS
Several important strategies emerged for conducting ethical research in urban communities whose residents have limited access to health care.
Grady
Christine
C
Department of Clinical Bioethics, National Institutes of Health, Bethesda, Md 20892-1156, USA. cgrady@nih.gov
Hampson
Lindsay A
LA
Wallen
Gwenyth R
GR
Rivera-Goba
Migdalia V
MV
Carrington
Kelli L
KL
Mittleman
Barbara B
BB
D001741:Black or African American; D035843:Biomedical Research / Q000941:ethics*; D019058:Community Networks / Q000458:organization & administration*; D003256:Community Participation; D004219:District of Columbia; D006297:Health Services Accessibility / Q000191:economics*; D006301:Health Services Needs and Demand; D006630:Hispanic or Latino; D006801:Humans; D007258:Informed Consent; D017057:Medically Uninsured / Q000208:ethnology*; D009316:National Institutes of Health (U.S.) / Q000458:organization & administration*; D019982:Organizational Case Studies; D018579:Patient Selection / Q000941:ethics; D012945:Social Values; D012946:Social Welfare; D035502:Trust; D014481:United States; D014504:Urban Health; D035862:Vulnerable Populations / Q000208:ethnology*