NATIONAL CENTER FOR BIOETHICS IN RESEARCH AND HEALTH CARE
NATIONAL CENTER FOR BIOETHICS IN RESEARCH AND HEALTH CARE
The National Center for Bioethics in Research and Health Care at Tuskegee University United States Public Health Service (USPHS) Syphilis Study at Tuskegee. President Bill Clinton said, “The United States government did something that was wrong—deeply, profoundly, morally wrong.” In addition to the Presidential Apology, by Executive Order, the president directed the Department of Health and Human Services to award a planning grant, “…..so the school [Tuskegee University] can pursue establishing a center for bioethics in research and health care.” President Clinton also said, “The center will serve as a museum of study and support efforts to address its legacy and strengthen bioethics training.” The Bioethics Center opened in 1999 and is located on the historic campus of Tuskegee University, in the City of Tuskegee, Macon County, Alabama. Between 1932 and 1972, approximately 600 low-income, lesser educated, African-American men, living in rural Macon County, Alabama, were misled to believe they were being treated for “bad blood.” In fact, this was the longest non-treatment study in U.S. history conducted by the federal government. In 1972, the study was stopped as a result of an article published in the New York Times. Since that time, specific effort by the federal government, universities and health professional groups have spent considerable human and fiscal resources to rebuild trust in human subject research and health care that was lost by many people living in the United States. Under the leadership of Rueben Warren, the director, the Bioethics Center continues its unique role to promote research, education and community engagement (service) in spheres of ethics with a focus on race/ethnicity, gender/sex and class.
“ One of our basic tasks is to promote the understanding of bioethics, what it is and how it relates to everyday life. This includes taking the lessons learned from our difficult past, looking at current issues related to racial disparities in disease and treatment, and showing people how they can be more empowered as health care consumers and showing scholars how they can become more informed research participants.” RE UBE N C . W A R R E N , D .D .S ., M .P .H ., D R.P .H ., M . D IV., DI R ECTOR
The History of the U.S. Public Health Service Syphilis Study at Tuskegee The story of the United States Public Health Service (USPHS) Syphilis Study at Tuskegee entered public awareness when the New York Times trumpeted on its front page: “Syphilis Victims in the U.S. Study Went Untreated for 40 Years.� During the study, there was no informed consent sought, which is now required, as a result of the ethical violations during the Syphilis Study. When the study began in 1932, there was no effective treatment for syphilis. However, even after penicillin was discovered as an effective treatment, the men were still denied care. After the study was stopped, a national advisory committee was appointed by the federal government to review the matter. In addition, a lawsuit was filed against the federal government by Attorney Fred Gray, an African-American, who actually has his practice located in the City of Tuskegee. There was an out-of-court settlement soon after. None of the men who were in the Syphilis Study are still living. However, The National Center for Bioethics in Research and Health Care has hosted an annual Commemoration honoring the men and their families to keep the legacy alive.
FUNDING PRIORITIES
Resources are needed to recruit a critical mass of researchers to engage fully in transdisciplinary investigations to understand the synergies between spheres of ethics and biomedical and translational research in order to resolve these persistent bioethical problems. In order for the Bioethics Center to expand its faculty and academic staff to conduct research, education and service programs, and to create new research collaborations, new programs and new undergraduate and graduate student support, it must secure funding in the amount of $10.15 million for the following priorities: Additional Bioethics Center Faculty and Staff Fully Endowed Professor
$2.5 Million
The John A. Kenney Endowed Chair in Health, Ethics and Public Policy will engage in research, teaching and public policy/service development focused on bioethics, public policy ethics and health disparities research related to race/ ethnicity, sex/gender and class. Associate Professor
$750,000
An associate professor is needed who will serve as a research medical epidemiologist providing epidemiological research/applied research in public health/health care delivery and who will be ideally a physician or clinician with advanced training and/or education in epidemiology or biostatistics. This person will also serve as Associate Director for Research at the Bioethics Center. Associate Professor
$400,000
An associate professor is needed who will serve as a health economist, providing leadership in health economics and health service research focused on cost benefit analysis and evaluation of the impact of the Affordable Care Act.
Research and Programmatic Activities Visiting Scholars
$2 Million
Approximately six to eight additional visiting scholars per year over the next five years will engage in subject-specific area research related to bioethics and public health ethics. The goal would be to provide an opportunity for visiting scholars from across the country to engage at the Bioethics Center. Commemoration and Public Health Ethics Intensive Course
$1 Million
There is an annual commemoration event to acknowledge the 1997 presidential apology for the U.S. Public Health Service Syphilis Study at Tuskegee. In 2012, this event was expanded to include an accredited course titled, “Public Health Ethics Intensive,” the purpose of which is to address issues of bioethics and public health ethics. Master of Arts in Humanities Bioethics Program Implementation
$500,000
This new graduate program will develop a cadre of individuals with specific expertise in addressing the bioethics challenges in the public and private sectors. This two-year program has been fully developed and approved by the Board of Trustees. Journal on Spheres of Ethics
$500,000
A journal on the spheres of ethics will be developed to meet the demand for scholarly contribution to the literatures.
Undergraduate and Graduate Support Graduate and Postdoctoral Fellowships Four Scholarships for M.A. in Humanities/Bioethics Bioethics Honors Program – Undergraduate
$1 Million $1 Million $500,000
Resources are required to support undergraduate and graduate students to develop the skill sets in various spheres of ethics to complement their disciplines of study. Internships and fellowships will provide opportunities for these students to engage in study and research in spheres of ethics that may or may not be result in the award of a degree.
MISSION
The mission of the Bioethics Center is to engage in research, education and service activities in bioethics, public health ethics, health disparities and health equity related to biomedical research, public health and health care delivery in order to positively impact African-American and other underserved populations. The vision of the Bioethics Center is, “Shaping the Future Now by Promoting Optimal Health: The Future is Now.” During the previous decade, the Bioethics Center focused on educating the general public about the Syphilis Study and the critical issues related to bioethics in research and health care targeting African-Americans and other underserved populations. However, in recent years, the field of bioethics has broadened to include public health ethics which focuses on “… the interest and health of groups, the social justice of the distributions of social resources, and the positive or social/human rights of individuals.” A rigorous review of the original Syphilis Study suggests that the study was poorly done but involved both public health and biomedical investigations. The sample population was selected based on demographic variables: As a result the Bioethics Center faculty and staff have expanded their work to continue additional efforts in bioethics in research and health care, but also to include research, education and service related to public health ethics and health.
Tuskegee University is today poised on the brink of reaching yet another milestone in its stellar history, as we prepare to join the ranks of premier research universities in the world. In order to attain this goal we are embarking on a major capital campaign to raise $250 million – “Programmed for Excellence.” Of major importance to this campaign is the support of the Tuskegee University National Center for Bioethics in Research and Health Care and its programs, which are integral to our students’ overall educational experience.
C A M PA I G N F O R
Giving to the Bioethics Center and the “Programmed for Excellence� Campaign If you have an interest in making a contribution in support of the Tuskegee University National Center for Bioethics in Research and Health Care, a representative will work with you and your advisers to assure that your gift is the greatest possible benefit to you and the university. Naming opportunities are available in recognition of major gifts to the college, and a university representative would be happy to explore those opportunities with you. For more information, please contact: Virgil E. Ecton Vice President for Federal Affairs and Director of the Capital Campaign 202-863-9384 vecton@mytu.tuskegee.edu Or Tuskegee University Office of Development 326 Kresge Center Tuskegee, Alabama 36088 334-727-8540 334-727-8195 www.tuskegee.edu