Research Participants' Views on the Ethics of Clinical Research

This pilot study will explore the usefulness of a series of questions asking about views of
research from the perspective of minority and economically disadvantaged research
participants. Racial and ethnic minorities are consistently under-represented in clinical
research. This under-representation has been attributed primarily to an unwillingness to
participate in research because of mistrust in the research establishment, especially in
light of widely known historical examples of abuse. However, more recent data suggests that
not being invited to participate in research, or stringent entry criteria, may contribute
substantially to the low numbers of ethnic minority research participants. The perspectives
of racial and ethnic minorities who are knowledgeable about or participating in research are
important to understanding the kinds of vulnerabilities that exist and any important
barriers to participation.

People 18 years of age and older from the Cardozo clinic in Washington, D.C., who are
enrolled in the National Institute of Arthritis and Metabolic Studies' natural history study
are eligible to participate in this protocol.

Participants are interviewed with questions about their own experiences in clinical research
as well as some hypothetical research studies. Questions include participants' general views
of clinical research, perceived risks and benefits of research, alternatives to research
participation, the limits of what they would be willing to accept in research and types of
research or research procedures they might perceive as unfair.