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This Article Full Text Full Text (PDF) All Versions of this Article: AJPH.2005.071233v1 96/11/1996    most recent Submit a response View Shopping Cart Alert me when this article is cited Alert me when eLetters are posted Alert me if a correction is posted Services Similar articles in this journal Similar articles in Web of Science Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Citing Articles Citing Articles via Web of Science (2) Citing Articles via Google Scholar Google Scholar Articles by Grady, C. Articles by Mittleman, B. B. Search for Related Content PubMed PubMed Citation Articles by Grady, C. Articles by Mittleman, B. B. Related Collections Ethics Access to Care Other Race/Ethnicity Qualitative Research

Christine Grady, PhD, RN, Lindsay A. Hampson, BA, Gwenyth R. Wallen, PhD, RN, Migdalia V. Rivera-Goba, EdD, RN, Kelli L. Carrington, MA and Barbara B. Mittleman, MD

Christine Grady and Lindsay A. Hampson are with the Department of Clinical Bioethics, National Institutes of Health, Bethesda, Md. Gwenyth R. Wallen and Migdalia V. Rivera-Goba are with the Office of Research and Outcomes Management, Department of Nursing, National Institutes of Health. Kelli L. Carrington and Barbara B. Mittleman are with the National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health.

Correspondence: Requests for reprints should be sent to Christine Grady, PhD, RN, Department of Clinical Bioethics, Bldg 10/1C118, National Institutes of Health, Bethesda, MD 20892-1156 (e-mail: cgrady{at}nih.gov).

Objectives. 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.