Research with underserved minority drug users is essential to quality health care and prevention. Understanding how participants perceive risk in research is necessary to inform research regulators so that research protections are neither lax, exposing participants to harm, nor overly stringent, thereby denying access to beneficial research. Data from 37 semistructured interviews of underserved, African-American crack cocaine users, collected from February to May 2006 in a large, urban setting, were analyzed using content analysis. In three hypothetical studies, participants recognized risks as relative and articulated and evaluated specific risks. Research regulators may enhance the accuracy of risk assessment in research by incorporating the views of participants. Study implications and limitations are noted. Future research on risk perception in research participation is suggested.Keywords risk perception; drug use; HIV/AIDS; research ethics; underserved minorities; research participation; research risk Access to preventive health measures and treatment is essential for drug users with or who are at risk for HIV/AIDS. But simply ensuring access is not enough: Prevention and treatment must be high quality, based on rigorous research evidence. Weighing the risks and benefits of research participation is standard practice in all research, but especially so in research with "vulnerable" participants such as drug users and minority populations. Understanding how participants perceive risk in research is necessary to inform research regulators so that research protections are neither lax, exposing participants to harm, nor overly stringent, thereby denying access to beneficial research (Mastroianni and Kahn, 2001). Although all health research conducted in the United States is assessed for proportional risks and benefits by Institutional Review Boards (IRBs), little is known about whether and/or how underserved minority drug users at risk for HIV perceive risks associated with research participation. The question of risk in research is important because minority populations are underrepresented in research and may have difficulty gaining access to experimental treatments for HIV infection (Gifford et al., 2002). If IRBs and other research regulators require protections based on an assumption of risk disproportional to the actual situation, they may inadvertently work to deny underserved minorities the benefits of access to HIV and substance abuse research.The use of illicit drugs exposes users to a variety of risks related to harm. How such risks are recognized and defined is pertinent to individual, research, and policy efforts to decrease risk.
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NIH-PA Author ManuscriptEpidemiologists view risk as an objective and quantifiable phenomenon. On the other hand, social scientists have argued that risk cannot be measured as an absolute value. Rather, perceptions of risk are formulated through social processes in which individuals and communities engage. The defin...