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PubMed2003

The Tuskegee Legacy Project: history, preliminary scientific findings, and unanticipated societal benefits.

This article is intended to provide a relatively complete picture of how a pilot study--conceived and initiated within an NIDCR-funded RRCMOH--matured into a solid line of investigation within that center and "with legs" into a fully funded study within the next generation of NIDCR centers on this topic of health disparities, the Centers for Research to Reduce Oral Health Disparities. It highlights the natural opportunity that these centers provide for multicenter. cross-disciplinary research and for research career pipelining for college and dental school students; with a focus, in this case, on minority students. Futhermore, this series of events demonstrates the rich potential that these types of research centers have to contribute in ways that far exceed the scientific outcomes that form their core. In this instance, the NMOHRC played a central--and critical, if unanticipated--role in contributing to two events of national significance, namely the presidential apology to the African American community for the research abuses of the USPHS--Tuskegee syphilis study and the establishment of the National Center for Bioethics in Research and Health Care at Tuskegee University. Research Centers supported by the NIH are fully intended to create a vortex of scientific activity that goes well beyond the direct scientific aims of the studies initially funded within those centers. The maxim is that the whole should be greater than the sum of its initial constituent studies or parts. We believe that NMOHRC did indeed achieve that maxim--even extending "the whole" to include broad societal impact. well beyond the scope of important, but mere, scientific outcomes--all within the concept and appropriate functions of a scientific NIH-funded research center.

Black or African American↗
PubMed2001

Statewide Tuskegee Alliance for clinical trials. A community coalition to enhance minority participation in medical research.

BACKGROUND: Cancer mortality rates for all sites are nearly 2.5 times greater for African-Americans compared with whites. In addition, there are data implying that cancer treatment outcomes for minorities are unfavorable compared with whites. Whether this is due to poor access to health care or a biologic property of malignancies occurring in specific populations remains to be determined. Because of these unknown factors, targeting minorities for clinical trials may contribute toward the reduction of the overall morbidity and mortality associated with specific cancers. METHODS: The current study describes the establishment of a genuine collaborative partnership between the targeted minority community and clinical investigators at the University of Alabama at Birmingham. This partnership was formed for the purpose of identifying strategies that would enhance the accrual and retention of minority participants into current and future cancer prevention and control trials. Focus groups and key informant interviews were conducted to ascertain the community's perception of participating in clinical trials. RESULTS: The majority of focus group participants were unclear regarding the nature of clinical trials. Participants indicated that they would participate in research studies if they received adequate information regarding the purpose and benefits of the study, and if the charge came from a pastor or physician. Barriers to participation included time commitments, family obligations, whether blood was involved, and past experiences. The majority of the participants indicated that their knowledge of the Tuskegee Syphilis Study did not influence their decision to participate in research. A major outcome of the conference was the formation of the Statewide Tuskegee Alliance Coalition. The planning coalition decided to continue their efforts to work with communities and promote cancer awareness among minorities. After the conference, the coalition conducted several meetings and in July 1998, 1 year after the conference, the coalition selected a chair, co-chair, and a formal name for the organized group. CONCLUSIONS: The planning, development, and implementation of this conference provided a valuable experience for researchers and community members. It was discovered that community involvement in the early phase of this project contributed to its success. Furthermore, the partnership that developed between researchers (academic institutions) and communities successfully provided an infrastructure that supported the interest of both groups.

Adult↗
PubMed1996

Why African Americans may not be participating in clinical trials.

African Americans have been underrepresented in clinical trials. This study was designed to determine factors that may help explain the low participation rate of African Americans in clinical trials. A historical review documented past medical experimentation and other practices on blacks that were often brutal and unethical. These experiences may have served to fortify the legacy of African-American mistrust in the medical system and culminated in the infamous Tuskegee Syphilis Study. Four major barriers to participation in clinical trials were identified: lack of awareness about trials, economic factors, communication issues, and mistrust. These barriers, as well as others, can be surmounted with proper pretrial planning, patient education, genuine commitment and concern by study staff, and hard work to overcome deficiencies.

Black or African American↗
PubMed2003

Willingness to participate in clinical treatment research among older African Americans and Whites.

PURPOSE: Using a health services utilization conceptual framework, the purpose of this analysis was to examine race differences in factors predictive of the behavioral intention of older persons to participate in a clinical treatment trial should they have a diagnosis of cancer. In addition, the analysis sought to determine if older African Americans were less likely than Whites to express willingness to participate, given knowledge of the Tuskegee syphilis study and greater fatalistic cancer beliefs. DESIGN AND METHODS: Data were drawn from a community-based telephone survey of 216 African Americans and 222 Whites, 50 years of age and older. RESULTS: Findings show that willingness to participate was significantly higher among males, persons of younger age, higher incomes, and with nonfatalistic cancer beliefs. Race differences were only apparent for the two significant interactions of race with age and high income. Neither knowledge of the Tuskegee study nor fatalistic cancer beliefs were more important for African Americans than for Whites. IMPLICATIONS: Study findings suggest that recruitment strategies need to be tailored to racial differences in factors affecting willingness to participate, particularly those related to age and income level.

Black or African American↗
PubMed2006

African-American community attitudes and perceptions toward schizophrenia and medical research: an exploratory study.

INTRODUCTION: Ensuring adequate representation of all demographic groups in medical research is necessary in order to ensure that the benefits associated with participation are equitably shared. Mental health research is unique in that the stigma associated with mental illness, such as schizophrenia, further hinders participation. Using focus groups, we set out to explore the attitudes and views of African Americans with regard to schizophrenia and medical research. METHODS: Four focus group discussions were conducted, with 23 participants divided into two groups of working and retired adults, and two groups of full- and part-time students selected from inner-city residents of Birmingham, AL, and surrounding counties. Data obtained were analyzed using the content analysis method. RESULTS: Diverse views were expressed about the cause of mental illness, and much of this was influenced by cultural beliefs. There was considerable misunderstanding of schizophrenia, and the majority of participants described the disease in terms of positive symptoms only. Whereas for older participants the Tuskegee syphilis study experience was an important factor in their reluctance to participate in medical research, younger participants expressed no knowledge of the study. Among younger participants an assumed level of social distrust was evident, with prominent fear of participating in research that employs physically intrusive methods. CONCLUSION: The provision of accurate information through trusted community sources and open dialogue will help to dispel myths, correct faulty assumptions and increase African-American participation in schizophrenia research.

Black or African American↗
PubMed1999

Attitudes and beliefs of African Americans toward participation in medical research.

OBJECTIVE: To describe barriers to participation of African Americans in research. DESIGN: Focus group interviews conducted in 1997. PATIENTS: Thirty-three African-American adults presenting to an urban public hospital for outpatient medical care participated in one of five focus groups. MEASUREMENTS AND MAIN RESULTS: African-American patients' attitudes toward medical research were measured. Mistrust of doctors, scientists, and the government was reported consistently by the participants. Many participants described concerns about the ethical conduct of clinicians and investigators when poor or minority patients are involved and cited examples of exploitation as supporting evidence for their mistrust of the medical establishment. While participants were clear about the violation of human rights in the Tuskegee Syphilis Study, all were misinformed of the historical facts of the study. Few participants understood the concept of informed consent. Participants saw signing the document as relinquishing their autonomy and as a legal protection for physicians. Despite these concerns, participants gave recommendations to improve minority participation in research. CONCLUSIONS: African-American participants in this study described distrust of the medical community as a prominent barrier to participation in clinical research. Participants described real and perceived examples of exploitation to support their distrust of researchers. The goal of the consent process, to inform patients of risks and benefits so as to facilitate self-determination, was misinterpreted by these participants. Understanding the importance of interpersonal trust within the clinical relationship may prove to be a significant factor in enhancing participation in clinical trials.

Adult↗
PubMed2005

Offering African Americans opportunities to participate in clinical trials research: how social workers can help.

Historically, African Americans have resisted participation in clinical trials and other research projects because of distrust of the mostly white research establishment. Although there are legitimate reasons for refusing to join clinical trials, most notably the abuses of the Tuskegee Syphilis Study, African Americans may be passing up opportunities to obtain needed medications years before they reach the market. This article analyzes 29 empirical articles from medical and mental health journals for their findings on recruiting and maintaining African Americans in clinical trials. Reasons for declining and accepting opportunities to participate are organized into themes that represent the salient findings of these reports. Suggestions for social work interventions and changes in research designs are intended to make the research process more welcoming to African Americans. Interventions are linked to the themes and incorporate social work ethics and values. The premise of this study is that African Americans should be offered realistic opportunities supported by sufficient resources to increase participation.

Black or African American↗
PubMed2000

From Laennec to lobotomy: teaching medical history at academic medical centers.

Although clinicians without a sense of history may not be condemned to repeat the past, the historical record offers many informative lessons. For one thing, history demonstrates the changing nature of scientific knowledge; current understandings of health and disease may prove as ephemeral as earlier discarded theories. In addition, history reminds us that social and cultural factors influence how physicians diagnose and treat various medical conditions. When attempting to teach the history of medicine at academic medical centers, instructors should be innovative as opposed to comprehensive. Students and residents are likely to find recent historical issues to be more relevant, particularly when such material can be integrated into the existing curriculum. Provocative topics include depictions of medicine in old Hollywood films, the contributions made by famous physicians at one's own institution, and historical debates over controversial events, such as the Tuskegee syphilis study and the use of lobotomy in mental institutions in the 1950s.

Academic Medical Centers↗
PubMed1994

The impact of HIV infection on society's perception of clinical trials.

All international codes of research ethics and virtually all national legislation and regulation in the field of research involving human subjects project an attitude of protectionism. Written with the aim of avoiding a repetition of atrocities like those committed by the Nazi physician-researchers, calamities like the thalidomide experience, or ethical violations like those of the Tuskegee syphilis study, their dominant concerns are the protection of individuals from injury and from exploitation. In recent years, however, society's perception of clinical research has shifted dramatically. Now, largely as a consequence of the efforts of the AIDS activists, clinical research is widely perceived as benign and beneficial. Although this shift in attitude has resulted in some important improvements in research policies and practices, this new perception is just as wrong-headed as was the earlier excessive protectionism. It is necessary to maintain a balanced perspective; our policies should encourage the conduct of ethical research while maintaining the vigilance necessary to safeguard the rights and welfare of the subjects.

Biomedical Research↗
PubMedDate not supplied

[Helsinki Declaration VI: a necessary revision, but sufficient?].

With the fifth amendment of the Declaration of Helsinki (Edinburg, 2000), the World Medical Association took a fundamental step forward in the history of the document, after years of internal and external debate. The Declaration was firstly adopted in 1964 as a clear intent to show that the medical profession could manage the ethical control of medical research with human beings. However, several disgraced episodes, like the Tuskegee Syphilis study, showed the insufficiency of such a system. An external control in the form of legal regulation was then proposed. Paradoxically, the importance of the Declaration did not decrease because many national regulations included it as a reference, actually providing it a legal status. But, though formally important, the Declaration hardly had an impact on real-world terms, because it assumed an old-fashion logic of clinical research failing to incorporate the modern methodological developments. The amendment could not be put off longer. In the present paper, I analyse the main shortcomings of the Declaration before the 2000 amendment and to what extent the fifth revision has corrected them.

Helsinki Declaration↗
PubMed2001

Meeting folks where they are: collecting data from ethnic groups in the community.

Since the Nazi medical experiments in Europe and the Tuskegee Syphilis Study in the United States, members of ethnic groups have been reluctant to participate in research. However, a National Institutes of Health policy mandates that researchers develop and implement strategies to insure the inclusion of women and minorities as subjects in clinical investigations. The purpose of this paper is to discuss methods found to be effective in recruiting and retaining members of ethnic groups as participants in three research projects. The three studies were: (a) Gambling Behaviors in African American Elders and Perceived Effects on Health, (b) Adolescent Risk Behavior, Self Esteem, and Social Influence: Comparison of Dominican Youth in Their Homeland and in the United States, and (c) A Multicultural Study of Support for Alzheimer's Caregivers.

Black or African American↗
PubMed2004

Lessons for HIV from Tuskegee.

We are fortunate to live in an era in which research allows significant progress in the therapy of the major diseases that affect us. However, evaluating their efficacy and safety is expensive, laborious and involves the study of human subjects in an appropriate manner. The principles of such trials have a heterogeneous basis encompassing the principles of utilitarianism, distributive justice, the protection of individual rights and the investigators' commitment to patients. The Tuskegee study of untreated syphilis is the longest non-therapeutic experiment on human beings in medical history. It continues to cast its shadow on the relationship between black Americans and the broader biomedical community. Parallels and the relationship with the HIV pandemic are discussed.

Anti-Bacterial Agents↗