. "5 Advancing State-of-the-Art Treatment and Prevention." The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press, 1999.
The following HTML text is provided to enhance online
readability. Many aspects of typography translate only awkwardly to HTML.
Please use the page image
as the authoritative form to ensure accuracy.
entities began developing a series of procedures designed to protect the rights of human subjects participating in research.
Efforts to obtain informed consent and protect participants in clinical trials, however, may have resulted in the exclusion of ethnic minority and medically underserved populations from some clinical trial settings. Many researchers found recruitment of these populations into clinical trials to be challenging; some researchers who were unaccustomed to working with ethnic minorities as potential research subjects encountered difficulties in obtaining their informed consent for participation in trials, whereas other researchers may have been too cautious in attempting to protect research subjects from unethical behaviors (Durso, 1997). Such attitudes may have furthered the gap of mistrust between the scientific community and ethnic minority communities. Some researchers dismissed the possibility of recruiting research subjects from ethnic minority communities altogether, citing difficulties in recruitment.
Mistrust of the scientific community among ethnic minority populations is also heightened by well-publicized claims concluding that African Americans and other minority groups are genetically inferior to whites, despite the repudiation of such work by large segments of the scientific community. Publications such as Richard Hernnstein and R.J. Murray's, The Bell Curve, which argues that African Americans are intellectually inferior to whites and Asians as a result of genetic differences between these groups, may reinforce the perception of many ethnic minorities that the "scientific establishment" views them as inferior and less deserving of high-quality medical care (Durso, 1997). Similarly, a large body of evidence indicates that African Americans and other minorities receive a lower intensity of medical and surgical care (Sullivan, 1991), reinforcing this view-point.
Structural issues within the health care research industry also pose challenges to the recruitment of ethnic minority and medically underserved individuals. Many urban, low-income, uninsured, underinsured, or ethnic minority individuals receive treatment in large public hospitals, as opposed to private hospitals or university-affiliated research hospitals. The latter often capture a larger share of federal research dollars. Increasingly, time and financial constraints prevent many physicians working in public hospital settings from participating in research projects and enrolling their patients as subjects.
Researchers working with lower-income and minority communities may also face greater costs in conducting research as a result of the need to address financial barriers to participation in clinical trials. Recruitment often requires more than placing ads in newspapers; researchers must expend resources to build relationships with community groups and hire outreach personnel. Clinical trial participants often must visit a doctor's