African Americans' views on research and the Tuskegee Syphilis Study

The participation of African Americans in clinical and public health resear ch is essential. However. for a multitude of reasons, participation is low in many research studies. This article reviews the literature that substant iates barriers to participation and the legacy of past abuses of human subj ects through research. The article then reports the results of seven focus groups with 60 African Americans in Los Angeles, Chicago, Washington, DC, a nd Atlanta during the winter of 1997. In order to improve recruitment and r etention in research, the focus group study examined knowledge of and attit udes toward medical research, knowledge of the Tuskegee Syphilis Study, and reactions to the Home Box Office production, Miss Evers' Boys, a fictional ized version of the Tuskegee Study. that premiered in February, 1997. The s tudy found that accurate knowledge about research was limited; lack of unde rstanding and trust of informed consent procedures was problematic: and dis trust of researchers posed a substantial barrier to recruitment. Additional ly. the study found that, in general, participants believed that research w as important, but they clearly distinguished between types of research they would be willing to consider participating in and their motivations for do ing so. (C) 2001 Elsevier Science Ltd. All rights reserved.