The Tuskegee Legacy Project
Claudio, Luz, Environmental Health Perspectives
Medical research studies often do not include ethnic and racial minorities as study participants in numbers that are representative of their populations. A study published in the November 2006 issue of the Journal of Health Care for the Poor and Underserved aimed to determine whether the paucity of minorities included in research could be explained by differences in willingness and misgivings related to participation in health research.
The study, funded by the National Institute of Dental and Craniofacial Surgery, was conducted by a research team within the Tuskegee Legacy Project (TLP), which was inspired by a 1994 bioethics conference at the University of Virginia. The research team was created to assess how the infamous Tuskegee Syphilis Study affected the attitudes of black Americans toward health research. From 1932 to 1972, 399 black men with syphilis were studied to observe the effects of untreated syphilis, even though effective treatment was already available. This unethical study has often been used to explain the assumption that blacks may be more prone than whites to distrust research and refuse to participate.
To test this assumption, the research team developed the TLP Questionnaire, which contained two scales: the Likelihood of Participation Scale and the Guinea Pig Fear Factor Scale, which measured self-reported general willingness to participate in research and fear of participating in research, respectively. …