Proposals for the Responsible Use of Racial and Ethnic Categories in Biomedical Research: Where Do We Go From Here?

Proposals for the Responsible Use of Racial and Ethnic Categories in Biomedical Research: Where Do We Go From Here?

8:30am                       
Welcome
Dean Alex Johnson, JD, University of Minnesota Law School

8:40am           
“The Lessons of History: How Race & Ethnicity Have Figured in Biomedical Research”
Prof. Troy Duster, PhD, Dept. of Sociology, New York University 

9:10am
“Current Proposals for Responsible Use of Racial & Ethnic Categories”

• Proposal 1
  Prof. Charles N. Rotimi, PhD, Acting Director, National Human Genome Center and Director of Genetic Epidemiology, Howard University Medical School
• Proposal 2
  Prof. Mildred Cho, PhD, Associate Director, Center for Biomedical Ethics, Stanford University
• Proposal 3
  Prof. Raj Bhopal, MD, MPH, Division of Community Health Sciences, Edinburgh University

10:40am
Break

11:00am
Panel Discussion and Q/A
Morning speakers in dialogue with the audience 

Noon
Lunch—“Race & Ethnicity in Biomedical Publication”
Margaret A. Winker, MD, Deputy Editor, JAMA           

1:15pm
“Community Involvement in Formulating & Conducting Research”
Prof. Morris Foster, PhD, Dept. of Anthropology, University of Oklahoma

1:45pm
Q/A
Moderated by Prof. Joycelyn Dorscher, MD, Director, Center for American Indian & Minority Health, University of Minnesota Medical School, Duluth 

2:10pm
“Legal Constraints on the Use of Race & Ethnicity in Biomedical Research”
Prof. Dorothy E. Roberts, JD, Law School & Institute for Policy Research, Northwestern University

2:40pm
Q/A
Moderated by Prof. Erik R. Lillquist, JD, Seton Hall University School of Law

3:00pm
Break

3:15pm
“Market Incentives and Regulatory Constraints:  The Use of Racial & Ethnic Categories in Pharmaceutical Research”
Prof. M. Gregg Bloche, MD, JD, Georgetown University Law Center                  

3:45pm                       
Q/A
Moderated by Prof. Jay Cohn, MD, University of Minnesota Medical School

4:00pm
Panel Discussion—“Where Do We Go From Here?”
Moderated by Prof. Jeffrey Kahn, PhD, MPH, Director, Center for Bioethics, University of Minnesota

• R. Timothy Mulcahy, PhD, Vice President for Research, University of Minnesota
• Gloria C. Lewis, MA, Director, Office of Minority and Multicultural Health, Minnesota Department of Health
• Prof. Rose Brewer, PhD, Dept. of African American & African Studies, University of Minnesota
• Dr. Carl S. Smith, MD, Chief, Urology Division, Hennepin County Medical Center; University of Minnesota Medical School
• Prof. Barbara Koenig, PhD, Dept. of Neurology and Neurological Sciences, Stanford University
  Joined by the 3 afternoon moderators:
• Prof. Joycelyn Dorscher, MD, Director, Center of American Indian & Minority Health, University of Minnesota Medical School, Duluth
• Prof. Erik R. Lillquist, JD, Seton Hall University School of Law
• Prof. Jay Cohn, MD, University of Minnesota Medical School                                              

5:00pm
Adjourn

Raj Bhopal, MD, MPH is the Alexander Bruce and John Usher Professor of Public Health at Edinburgh University. He received his MD from Edinburgh University and his MPH from Glasgow University. His research and writing focus on health of ethnic minority groups, Legionnaires’ disease, primary care research, the health impact of industrial pollution, and primary biliary cirrhosis. He is currently researching ethnic variations in cardiovascular disease. He was honored with the award of the CBE (Commander of the British Empire) by the Queen in 2001.

M. Gregg Bloche, MD, JD is Professor of Law at Georgetown University Law Center and Co-Director of the Georgetown-Johns Hopkins Joint Program in Law and Public Health. His research focuses on health care financing law and policy, biomedical ethics, and regulatory and contractual approaches to health risk. Dr. Bloche received a Robert Wood Johnson Foundation Investigator Award in Health Policy Research for 1997-2000 to support his research and writing on the legal and regulatory governance of managed care organizations, and he edited and contributed to The Privatization of Health Care Reform: Legal and Regulatory Perspectives (Oxford Univ. Press, 2003). Dr. Bloche is a member of the Institute of Medicine’s Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care and the Committee on Scientific Freedom and Responsibility of the American Association for the Advancement of Science. Dr. Bloche has been a member of the board of Physicians for Human Rights and a consultant to South Africa’s Truth and Reconciliation Commission (on human rights in the health sector), the Federal Judicial Center, the National Institutes of Health, the World Health Organization, and other private and public bodies. Dr. Bloche received his MD and JD from Yale University and completed his residency in psychiatry at the Columbia-Presbyterian Medical Center.

Mildred Cho, PhD is Senior Research Scholar and Associate Director of the Stanford University Center for Biomedical Ethics. She received her BS in Biology from the Massachusetts Institute of Technology and her PhD from the Stanford University Department of Pharmacology. Her post-doctoral training was in Health Policy as a Pew Fellow at the Institute for Health Policy Studies at the University of California, San Francisco and at the Palo Alto VA Center for Health Care Evaluation. Before coming to Stanford, Dr. Cho was Assistant Professor of Bioethics in the Center for Bioethics and the Department of Molecular and Cellular Engineering at the University of Pennsylvania School of Medicine. She is a member of national advisory boards for the National Human Genome Research Institute, the American Association for the Advancement of Science Public Policy Directorate, and the Board of Reviewing Editors of Science magazine. She has also served as a member of the working group on synthetic genomes for the U.S. Department of Energy. Her major areas of interest are the ethical and social impacts of genetic research and its applications, and how conflicts of interest affect the conduct of academic biomedical research.

Troy Duster, PhD is Professor of Sociology and Director of the Institute for the History of the Production of Knowledge at New York University. He also holds an appointment as Chancellor’s Professor at the University of California, Berkeley. From 1996-98, he served as member and then chair of the joint NIH/DOE advisory committee on Ethical, Legal and Social Issues in the Human Genome Project (The ELSI Working Group). He is a member of the Board of Advisors of the Social Science Research Council, and last year served as chair of the Board of Directors of the Association of American Colleges and Universities. He is currently the President of the American Sociological Association, and a Senior Fellow of the Rockridge Institute. He is the former Director of the American Cultures Center and the Institute for the Study of Social Change, both at the University of California, Berkeley. 

Morris Foster, PhD, MPhil, is Associate Professor of Anthropology, Pediatrics, and Native American Studies at the University of Oklahoma. His research focuses on medical anthropology, ethnohistory, sociolinguistics, African Americans, and North American Indians. He is Director of the Special Populations Unit at the University of Oklahoma’s General Clinical Research Center, and Associate Director for Population Sciences at the University’s Cancer Center. He is also co-chair of the International Haplotype Map Project’s Communications Group. His book, Being Comanche: A Social History of an American Indian Community (1993), won the American Society for Ethnohistory’s Erminie Wheeler-Voegelin Prize for Best Book in Ethnohistory. He received his PhD at Yale University

Dorothy Roberts, JD is the Kirkland and Ellis Professor at Northwestern University School of Law, with joint appointments in the Departments of African American Studies and Sociology (courtesy), as a faculty fellow of the Institute for Policy Research, and as a faculty affiliate of the Joint Center for Poverty Research. She received her BA from Yale College and her JD from Harvard Law School. Prof. Roberts has written and lectured extensively on the interplay of gender, race, and class in legal issues concerning reproduction, bioethics, and child welfare. She is the author of Killing the Black Body: Race, Reproduction, and the Meaning of Liberty (Pantheon, 1997), which received a 1998 Myers Center Award for the Study of Human Rights in North America, and Shattered Bonds: The Color of Child Welfare (Basic Books, 2002), as well as the coauthor of casebooks on constitutional law and women and the law. She has published more than fifty articles and essays in books and scholarly journals, including Harvard Law Review, Yale Law Journal, Stanford Law Review, and Social Text. 

Charles Rotimi, PhD, MPH is acting director of the National Human Genome Center at Howard University. He is also a Professor in the Department of Microbiology and Director of Genetic Epidemiology at Howard University’s College of Medicine. His long-term scientific interest is directed at understanding the patterns and determinants of common complex diseases including diabetes, hypertension and obesity in populations of the African Diaspora. He is the president of the African Society of Human Genetics. He received his PhD and MPH at the University of Alabama, Birmingham.

Margaret A. Winker, MD is Deputy Editor of JAMA (Journal of the American Medical Association), and Director of the American Medical Association’s Division of Scientific Online Resources. She is also Web Editor for JAMA and the 9 Archives journals. Dr Winker completed her undergraduate degree at Haverford College, medical school at the University of Illinois Abraham Lincoln School of Medicine, and medical residency and fellowship training at the University of Chicago. She is board-certified in Internal Medicine, Geriatrics, and Clinical Pharmacology. Dr Winker came to JAMA as a Fishbein Fellow in 1992 and has been an editor for JAMA for 12 years. 

Rose Brewer, PhD is Associate Professor, Director of Undergraduate Studies, and Morse Alumni Distinguished Teaching Professor in the University of Minnesota’s Department of African American and African Studies. Her research focuses on the intersection of economy, culture, and Black family life; Black women’s studies; race, class, and gender; social transformation; and critical theory. She received her PhD from Indiana University.

Jay Cohn, MD is Professor of Medicine and Director of the Cardiovascular Division of the Rasmussen Center for Cardiovascular Disease Prevention at the University of Minnesota. Dr. Cohn is internationally recognized for his contributions to the understanding of cardiovascular disease and for his leadership in designing and carrying out clinical trials to document efficacy of new interventions for heart failure. He organized and chaired the first long-term trials in heart failure, the Veterans Affairs Cooperative Study Program on vasodilator therapy of heart failure (V-HeFT). He received his MD at Cornell University and completed his residency at Beth Israel Hospital in Boston.

Joycelyn (Joy) Dorscher, MD, a member of the Turtle Mountain Chippewa Tribe, is the Director of the University of Minnesota’s Center of American Indian and Minority Health. She is also an Assistant Professor in the Department of Family Medicine at the University of Minnesota Medical School-Duluth and a community Family Medicine Physician. She completed her Family Medicine residency at the University of Minnesota in 1997. Dr. Dorscher has been a member of Association of American Indian Physicians (the largest national Native American physician organization) since her graduation from the University of Minnesota in 1994; she is currently the president-elect for the organization.

Alex M. Johnson, Jr., JD is ninth Dean of the University of Minnesota Law School. He is the third William S. Pattee Professor of Law. Previously, he served for seven years as the Vice Provost for Faculty Recruitment & Retention at the University of Virginia and eleven years as the Mary and Daniel Loughran Professor of Law at the University of Virginia School of Law. He served as the Harrison Foundation Research Professor of Law from 1992-1995. Dean Johnson’s current research interests include critical race theory, examining the social construction of race and ethnicity and its impact on law and legal issues, as well as the application of relational contract theories to interests in real property.

Jeffrey P. Kahn, PhD, MPH holds the Maas Family Chair in Bioethics and is Director of the University of Minnesota’s Center for Bioethics and Professor in the Department of Medicine, Medical School; Division of Health Services Research and Policy, School of Public Health; and Department of Philosophy. He works in a variety of areas of bioethics exploring the intersection of ethics and health policy, including research ethics, ethics and genetics, and ethical issues in public health. 

Gloria C. Lewis, MA is the director of the Minnesota Department of Health’s Office of Minority and Multicultural Health, which develops policies and strategies aimed at reducing the health disparities affecting Minnesota’s ethnic and racial communities. She has 25 years of experience as an administrator of public and private agencies and previously served as Director of Violence Prevention Programs for the Chicago Department of Public Health. She serves on the Greater Minneapolis Council of Churches Board, the American Cancer Society Board, American Heart Association – Metro Board, and the University of St. Thomas MBA Advisory Board. She is an adjunct professor at the University of Minnesota School of Public Health. Mrs. Lewis was recently named by the Minnesota Physicians Publication as one of Minnesota’s 100 Leaders in Health Care. She earned a master’s degree from Boston University. She serves on the Augsburg Board of Regents as the Vice Chair of the Marketing Committee and at-large on the Executive Committee.

R. Erik Lillquist, JD is the Director of the Institute of Law, Science and Technology at Seton Hall Law School. He teaches in the areas of criminal procedure, evidence, contracts, and electronic commerce. His current research interests include the interaction between theories of human decision-making and the legal process, and understanding the implications of biology, medicine and psychology for law. Prof. Lillquist received his JD from the University of Virginia where he was elected to the Order of the Coif and was the Editor-in-Chief of the Virginia Law Review. After law school, he clerked for The Honorable John M. Walker, Jr. of the United States Court of Appeals for the Second Circuit. 

R. Timothy Mulcahy, PhD is Vice President for Research at the University of Minnesota. He is responsible for the oversight and administration of an externally-funded research program of over $500 million on the four campuses of the University of Minnesota system. He is also responsible for technology commercialization activities at the University and for the administration of regulatory offices associated with research. Dr. Mulcahy earned his doctorate in Pathology and Radiological Sciences from the University of Wisconsin-Madison. He previously served as Associate Dean for the Biological Sciences (1996-2005) and Associate Vice Chancellor for Research Policy (2002-2005) at the University of Wisconsin. His research has focused on cancer biology, spanning the spectrum from bench research to clinical trials. 

Carl S. Smith, MD is Chief of the Urology Division in the Department of Surgery at Hennepin County Medical Center. He is also an Officer for the Minnesota Association of Black Physicians Foundation (MABPF) and a Clinical Assistant Professor in the University of Minnesota’s Medical School, Department of Urologic Surgery.

Susan M. Wolf, JD is the Faegre & Benson Professor of Law at the University of Minnesota Law School, Professor of Medicine at the Medical School, and a faculty member in the Center for Bioethics. She is also the founding Director of the University’s Joint Degree Program in Law, Health & the Life Sciences and founding Chair of the University’s Consortium on Law and Values in Health, Environment & the Life Sciences. She is a member of the Ethics Committee of the American Society for Reproductive Medicine, a Fellow of The Hastings Center, a member of the Board of Directors of the American Society for Bioethics and Humanities (ASBH), and former Chair of the Association of American Law Schools (AALS) Section on Law, Medicine and Health Care. Her research focuses on health law and bioethics.