African Americans’ views on research and the Tuskegee Syphilis study

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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.

Introduction

The participation of African Americans in clinical and public health research is essential for addressing disparities in health status. However, for many different reasons, participation is low in many research studies. The authors will first review the literature that substantiates barriers to participation and focus specifically on the legacy of the Tuskegee Syphilis Study as a prime symbol of past abuses of human subjects through research. The authors will then report the results of seven focus groups with 60 African Americans in Los Angeles, Chicago, Washington, DC, and Atlanta. Conducted in winter, 1997, 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.

Section snippets

Background

Data on participation rates suggest that African Americans are especially difficult to recruit into research. For example, Arean and colleagues (1993) used advertisements in local newspapers and radio stations to recruit elderly adults into a clinical trial. While this was successful for whites, only 1% of those who responded belonged to an ethnic or racial minority group. Ballard, Nash, Raiford and Harrell (1993) reported that, as of 1989, only 9.9% or 60 of 607 participants in a study of

Methods

Since most of the published literature on barriers to participation are either literature reviews, data from very small samples or observations from researchers/providers, focus groups were chosen as the methodology for this study because they offered an opportunity to explore participants’ responses to many of the issues identified in the literature, examine their reactions more fully, and to allow new areas of inquiry to emerge. The research design called for eight focus groups, two in each

Data analysis

All transcripts and notes were utilized in the analysis. Initial reading of notes and transcripts focused on identifying key themes, words and phrases that occurred in response to each question. Then, the authors examined themes across the transcripts and developed broader conceptual domains. Quotes were extracted that illustrated common responses and themes across groups.

Characteristics of participants

A total of 60 individuals participated in four moderate income and three low-income focus groups. Due to logistical difficulties, the group of moderate-income participants in Chicago failed to take place. Of these 60, 20 men and 40 women participated with a median age of 37. Participants ranged in age from 19 to 78. Five participants had less than a high school education and another 5 had a high school diploma or its equivalent. Ten participants reported some college with 6 having attended

Results

In general, geographic region, gender and SES had no perceivable influence on participant knowledge of or feelings toward either medical research in general or the Tuskegee Syphilis Study in particular. While some participants from the moderate-income groups were somewhat more knowledgeable about research, there were no differences between groups on most issues. Participants were virtually unanimous from the outset that African Americans needed to be very cautious about when and how they

Understanding of research

The moderator posed the following question, “What comes to mind when I say medical research?” The common responses ranged from descriptions of types of research, research as a profit making endeavor, to unethical research studies. Numerous participants described different purposes of research such as, “It’s also endeavoring to find cures for various diseases, too”, as well as different types of research stating “Yeah, they use some type of procedure or medication, maybe, or cutting you open,

Knowledge of research terms and procedures

To gauge knowledge about research, the moderator asked several questions about common research terms such as confidentiality, informed consent, placebo, clinical trial, protocol and randomization. In general, level of knowledge was not very high. While many participants understood confidentiality, others had misconceptions about the term. While one participant described it as “No one sees you going in or out”, another thought it meant, “The data will only be used in a positive manner”.

While a

Past participation in medical research

Very few participants had ever participated in medical research. Of the 9 who had, most indicated involvement in surveys or providing samples of body fluids. Only one indicated more intensive involvement in a study that included hormone injections, computed axial tomography (CAT) scans and positron emission tomography (PET) scans. For some participants, there was confusion between research and treatment, especially if the treatment was provided at a teaching hospital. One man stated, “There’s a

Motivations of researchers

Participants correctly reported that universities, hospitals, corporations and government agencies carry out research. They reported a variety of motivations of the researchers that ranged from positive ones such as, “I think they are trying to learn or trying to cure some of these diseases”, to more skepticism that they are motivated by money as reflected in this man’s comment, “…but the bottom line is everything is money because if they make it work on you, then by production, they’ll get

Who benefits from research

The majority of participants saw the benefits of research for the public. A few recognized that research might not immediately benefit its actual participants. One man stated, “I would like to say in the early stages, I don’t think the patient benefits but now, if they keep medical research going on and they refine it …, later on, that person might receive the benefits”. One participant raises the complexity of the benefits and potential costs of research for African Americans:

…medical research

Motivations for participation in research

Despite the overwhelming predisposition against participation, participants in this study provided new insights when they identified several motivations for participation in research. These include personal motivations to help themselves or a loved one through treatment provided as part of the research (typically in relation to a chronic or terminal illness), altruism, and financial compensation. For a number of participants, their own experience with a life-threatening or severe chronic

Willingness to participate in research

Participants in the focus groups identified several factors that would affect their actual willingness to participate in research. One person indicated a concern about privacy and the use of data, “Privacy. I want to try to maintain as much of my privacy as possible. You know, how much confidentiality will I really receive? What will be done with my information?” Another person expressed a common issue when he stated, “What would make me participate is being made aware before I commit to it of

Knowledge and perceptions of the Tuskegee Syphilis Study

The majority of participants were familiar with the Tuskegee Study, though most lacked specific and correct information about the exact nature, extent and length of the study. All knew that it involved a study of African American men who had syphilis and did not receive treatment. One woman gave an emotional account:

They promised them things that they had no intention of delivering while they got sick and [when] they told the people conducting it that they were getting sick and they

Reactions to Miss Evers’ boys

Following their viewing of the movie, participants expressed mixed reactions. Many participants were concerned about the emphasis on African American involvement in the study to the exclusion of the white doctors from the US Public Health Service. A number of participants were angered by Miss Evers’ actions and could not understand how she continued to participate. Others countered that the racism and sexism prevalent at that time should be considered, and some questioned the way the movie

Race, trust and research

Distrust of white researchers was a common theme. Some saw racism as the motivation behind mistreatment in research as illustrated in this woman’s comment, “But the white man always has the idea that we’re so inferior that we’re like animals so why not kill them; why didn’t they pick the white man and do it to him, give him the syphilis thing”. One man articulated the linkage between race and trust when he said:

I think that most of the people who are in control of research don’t look like me,

Discussion

It is important to recognize that despite differences between focus groups on levels of education and income, many common perceptions and issues arose. While certainly results of focus groups are not generalizable to the population, the results suggest that researchers must take a number of active approaches to increase knowledge, improve communication and strengthen trust in order to enhance recruitment and retention of African Americans in research. Our findings suggest a limited

Acknowledgements

The authors would like to acknowledge Anna Dixon for her skillful moderation of all sessions, Catherine Harbour and Ann Marie Lee for their editorial assistance, and the reviewers for their thoughtful comments.

References (24)

  • T. Freedman

    “Why Don’t They Come to Pike Street and Ask Us?”: Black American Women’s Health Concerns

    Social Science and Medicine

    (1998)
  • V. Gamble

    A legacy of distrust: African Americans and medical research

    American Journal of Preventive Medicine

    (1993)
  • P. Arean et al.

    Comparative effectiveness of social problem-solving therapy and reminiscence therapy as treatments for depression in older adults

    Journal of Consulting and Clinical Psychology

    (1993)
  • E. Ballard et al.

    Recruitment of Black Elderly for Clinical Research Studies of Dementia: The CERAD Experience

    The Gerontologist

    (1993)
  • B. Condor

    Rx for women’s health: FDA comes to town with a campaign to teach us how medicines affect our bodies

    The Chicago Tribune

    (June 8, 1997)
  • P. Eastman

    NCI hopes to spur minority enrollment in prevention and screening trials

    Journal of the National Cancer Institute

    (1996)
  • W. El-Sadr et al.

    The challenge of minority recruitment in clinical trials for AIDS

    Journal of the American Medical Association

    (1992)
  • V. Gamble

    Under the shadow of Tuskegee: African Americans and health care

    American Journal of Public Health

    (1997)
  • V. Gamble et al.

    Final report of the Tuskegee Syphilis Study Legacy Committee

    (1996)
  • B. Green et al.

    Participation in health education, health promotion, and health research by African Americans: effects of the Tuskegee syphilis experiment

    Journal of Health Education

    (1997)
  • Y. Harris et al.

    Why African Americans may not be participating in clinical trials

    Journal of the National Medical Association

    (1996)
  • Hatch, J., Moss, N., Saran, A., Presley-Cantrell, L. & Mallory, C. (1993). Community research: Partnership with black...
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