This article is guided by principles and practices of bioethics and public health ethics focused on health care reform within the context of promoting Optimal Health. The Tuskegee University National Center for Bioethics in Research and Health Care is moving beyond the traditions of bioethics to incorporate public health ethics and Optimal Health. It is imperative to remember the legacy of the ill-fated research entitled Tuskegee Study of Untreated Syphilis in the Negro Male. Human participant research and health care must (...) be connected to principles of bioethics and public health ethics if the Affordable Care Act is expected to positively impact on the health of people living in the United States. Optimal Health describes a strategy to achieve individual and population health. Health care reform offers an opportunity to shift from the traditional pathology focus of managing diseases to target disease prevention and health promotion with a new set of tools. Transformational change is possible if the lessons learned from the U.S. Public Health Service Syphilis Study at Tuskegee are considered and strategies in bioethics and public heath ethics are employed. (shrink)

In 1997 President Clinton apologized to the survivors of the U.S. Public Health Service Syphilis Study. Since then, two of his recommendations have received little attention. First, he emphasized the need to remember the shameful past so we can build a better future for racial'ethnic minority populations. Second, he directed the creation in partnership with higher education to prepare training materials that would instruct biomedical researchers on the application of ethical principles to research with racial/ethnic minority populations. This article proposes (...) the inclusion of these issues in the implementation of the Affordable Care Act. It asks, What is the right or good thing to do? What are our obligations to one another? Two challenges are examined: (a) Conducting research with African Americans without knowledge of bioethics specific to this population, and (b) the ethical dilemma of conducting research that does not adequately take into account the diversity within the Black population that is a contributing factor in health disparities. Training and policy recommendations responsive to President Clinton's Apology are presented. (shrink)

The Tuskegee Syphilis Study is often cited as a major reason for low research participation rates among racial/ethnic minorities. We use data from a random-digit-dial telephone survey of 510 African Americans and 253 Latinos drawn from low income Los Angeles neighborhoods to investigate associations between knowledge of the study and endorsement of HIV/aids conspiracy theories. Results indicate African Americans were significantly more likely than Latinos to endorse HIV/aids conspiracy theories and were more aware of the study. Nevertheless, few Americans and (...) Latinos had ever heard of Syphilis Study suggesting that awareness is not a major factor in low participation rates. (shrink)

This article reviews the history of medical and research abuses experienced by American Indians since European colonization. This article examines the unethical research of American Indians/Alaska Natives in light of the Tuskegee Study of Untreated Syphilis in the Negro Male. Literature citations indicate that significant unethical research and medical care incidents occurred both before and after the Tuskegee Syphilis Study among American Indians/Alaska Natives. The majority of these unethical abuses were committed by the federal government and within the historical context (...) of a long-term contentious relationship between American Indians and the federal government. Although President Clinton issued a highly visible public apology to the African American survivors of the Tuskegee syphilis experiment in 1997, American Indians have yet to experience such visible federal acknowledgment. To ensure ethical research in which benefits outweigh risks and findings are not value-laden or misrepresented, tribes have instituted their own Institutional Review Boards coupled with community-participatory activities. (shrink)

This article discusses the paradox of exclusion/inclusion: U.S. health policy prohibits Latinos who fall under certain classifications from accessing health services and insurance yet permits them to be human subjects in health research. We aim to advance the discussion of health research ethics post the Tuskegee syphilis experiment in Latinos by (a) tracing the impacts of policy exclusion and the social context of anti-Latino sentiment on Latinos' low participation rates in health research and inequitable access to treatment modalities; (b) challenging (...) researchers to address social sources of vulnerabilities; and (c) offering recommendations on adapting a social justice ethical stance to address these challenges, which are part of the Tuskegee Study legacy. (shrink)