African Americans’ views on research and the Tuskegee Syphilis study

Abstract

The participation of African Americans in clinical and public health research is essential. However, for a multitude of reasons, participation is low in many research studies. This article reviews the literature that substantiates barriers to participation and the legacy of past abuses of human subjects through research. The article then reports the results of seven focus groups with 60 African Americans in Los Angeles, Chicago, Washington, DC, and Atlanta during the winter of 1997. In order to improve recruitment and retention in research, the focus group study examined knowledge of and attitudes toward medical research, knowledge of the Tuskegee Syphilis Study, and reactions to the Home Box Office production, Miss Evers' Boys, a fictionalized version of the Tuskegee Study, that premiered in February, 1997. The study found that accurate knowledge about research was limited; lack of understanding and trust of informed consent procedures was problematic; and distrust of researchers posed a substantial barrier to recruitment. Additionally, the study found that, in general, participants believed that research was important, but they clearly distinguished between types of research they would be willing to consider participating in and their motivations for doing so.

Colorectal Cancer Screening and African Americans: Findings from a Qualitative Study

“…Perhaps it is the historical injustice and discriminatory practices in healthcare that continue to resonate. 30,31 Nonetheless, there is no simple solution to remedy this. A healthcare system is needed that recognizes the unique cultural characteristics of African Americans and then tailors interactions and experiences in healthcare around these values and norms.…”

Considerations for bio-specimen collection among black women residing in the rural Deep South participating in a cancer prevention study

“…This "no pressure" approach to recruitment helped to make those who did choose to participate more at ease while also maintaining goodwill with those who chose not to participate and the community-at-large. In the context of historical research, atrocities that have occurred in the rural Deep South, such as the Tuskegee Syphilis Study (Brandt 1978;Freimuth et al 2001), particular attention must be given to the disclosure process while also making individuals feel empowered to opt out of participating in a research study.…”

Recruiting Black/African American men for research on prostate cancer prevention

“…Trust remains a singular cultural deter-minant with respect to the engagement of African Americans in health prevention activities. 24,34,35 In an effort to better understand the prostate cancer prevention behaviors of African American men and to elicit effective ways to reach these men and engage them, Woods et al developed and conducted the 'It's All About U: Prostate Health Promotion' project, a 3-year longitudinal study (unpublished data). The purpose of the study was to explore how culture and communication with healthcare providers influenced knowledge, health beliefs, and practices with regard to prostate cancer prevention.…”