The Human Genome Project: Expanding the Conversation

ST. LOUIS, --The Human Genome Project has raised profound legal, ethical, medical and policy issues. "The Human Genome Project: Expanding the Conversation" at Washington University in St. Louis' Schools of Law and Medicine Jan. 28-29, will assemble scholars from widely divergent disciplines to examine the genomics revolution.

This centerpiece conference is one of four components of the year long program "Law and the Human Genome Project: Research, Medicine, and Commerce," co-sponsored by the Washington University School of Law's Center for Interdisciplinary Studies and the School of Medicine.

"We want to add new voices to the conversation," said conference co-organizer Susan Frelich Appleton, J.D., associate dean of the Washington University law faculty and the Lemma Barkeloo and Phoebe Couzins Professor of Law. " We wanted to include bright, creative thinkers who would bring new insights to the Human Genome Project discussion."

The conference combines these new voices with two of the Project's key figures: Francis S. Collins, M.D., Ph.D., director of the National Human Genome Research Institute at the National Institutes of Health, where he oversees the 13-year effort to map the genome by the year 2003; and Robert H. Waterston, M.D., Ph.D., the James S. McDonnell Professor of Genetics and head of the genetics department at the Washington University School of Medicine, where he directs the Human Genome Sequencing Center.

Collins will deliver the conference's opening keynote address, "Genomics, Medicine, and Society," 9:15 a.m., Jan. 28, at the medical school's Eric P. Newman Center.

Three other keynote speakers will present addresses during the two-day conference. Nancy S. Wexler, Ph.D., The Eugene Higgins Professor of Neuropsychology at Columbia University and president of the Hereditary Disease Foundation, will present the Monday afternoon keynote address, "Genetic Joy--Genetic Jeopardy;" Michael Traynor, J.D., president of the American Law Institute and a partner of Cooley Godward LLP, will give an address at the law school 9:15 a.m., January 29, titled "The Selfish -- Genome?" and Susan M. Okin, Ph.D., a political scientist and the Martha Sutton Weeks Professor of Ethics in Society at Stanford University, will present the fourth keynote address, "Genetics and the Persistence of Teleological Thinking."

Collins notes that the conference's multidisciplinary nature is a particularly important feature: "There is a mix of scholars who have worked on these issues for many years and others who were drawn into the field for the first time by the conference organizers."

Richard K. Wilson, Ph.D. associate professor of genetics at Washington University's School of Medicine and co-director of the Genome Sequencing Center there, is a co-organizer of the conference with Appleton. They are joined by the third co-organizer, Rebecca S. Dresser, J.D., Daniel Noyes Kirby professor of law and professor of ethics in medicine, Washington University in St. Louis; F. Scott Kieff, J.D., associate professor of law, Washington University in St. Louis, and the John M. Olin Senior Research Fellow in Law, Economics, and Business, Harvard University; and Charles R. McManis, J.D., professor of law and director of the Intellectual Property/Technology Law Program, Washington University in St. Louis.

Wilson sees the conference as a powerful opportunity for key professional people "to ask some good questions and develop some good thoughts as to what we do with the various issues that come with genome science, to consider what kinds of legislation we need our congressmen and senators to think about and what kind of guidelines we put in place to protect Joe Public."

Discussion and additional speakers responding and offering their own insights will follow each of the plenary sessions. True to the conference's intent, these speakers will include both experts in genetics and other scholars considering the Project's implications for the first time. In addition to Waterston, they are:

• Anita L. Allen, J.D., Ph.D., professor of law and philosophy at the University of Pennsylvania, a visiting professor of law, Yale University, and an authority on privacy and bioethics;

• Robert A. Burt, J.D., the Alexander M. Bickel Professor of Law at Yale University and an expert on law and medicine, mental health law and disability law;

• David Cox, M.D., Ph.D., co-director of the Stanford University Human Genome Center, scientific director of Perlegen Sciences and member of the National Bioethics Advisory Commission;

• Gerald L. Early, Ph.D., the Merle Kling Professor of Modern Letters, Departments of English and of African and Afro-American Studies, Washington University in St. Louis, and a nationally recognized scholar on race and American culture;

• Amy Gutmann, Ph.D., Provost and Laurence S. Rockefeller Professor of Politics and the University Center for Human Values, Princeton University, and a noted authority on deliberative democracy;

• No�lle Lenoir, J.D., senior counsel at the international law firm of Herbert Smith, an associate professor at the University of Paris II Law School, visiting professor at Yale Law School and the University College of London Law School, and the first woman justice on France's Constitutional Supreme Court;

• Joel Mokyr, Ph.D., the Robert H. Strotz Professor of Arts & Sciences, chair of the Department of Economics and Professor of History at Northwestern University and a specialist on the economics of technological change; and

• Margalit Birnbaum Mokyr, Ph.D., professor of biochemistry and molecular biology at the University of Illinois at Chicago.

The January conference is the first of four events. Three additional colloquia are planned for spring and include:

• March 22: "Professional, Ethical, Legal, and Social Challenges for Genetic Counseling and Testing," led by Susan Frelich Appleton and featuring Garland E. Allen, Ph.D., professor of biology, Washington University in St. Louis; Michael B�rub�, Ph.D., Paterno Family Professor in Literature, Pennsylvania State University; Alexander Morgan Capron, J.D., the Henry W. Bruce University Professor of Law and Medicine and co-director of the Pacific Center for Health Policy and Ethics, University of Southern California; Pauline Kim, J.D., professor law, Washington University in St. Louis; Kimberly A. Martin, M.D., assistant professor, Department of Obstetrics and Gynecology, School of Medicine, Washington University in St. Louis; Dorothy E. Roberts, J.D., professor of law and professor of sociology, Northwestern University; Karen H. Rothenberg, J.D., Dean of the School of Law and Marjorie Cook Professor of Law, University of Maryland; Barbara Katz Rothman, Ph.D., professor of sociology, Baruch College and CUNY Graduate School; and Alison J. Whelan, M.D., associate professor, Department of Medicine and Department of Pediatrics (Genetics Division), School of Medicine, Washington University in St. Louis.

• April 5: "Germ Line Interventions and Human Research Ethics," led by Rebecca S. Dresser and featuring Anne M. Bowcock, Ph.D. , professor of genetics, pediatrics, and medicine, Department of Genetics, School of Medicine, Washington University in St. Louis; Mark Frankel, Ph.D., director of the Scientific Freedom, Responsibility and Law Program, American Association for the Advancement of Science; Nancy M.P. King, J.D., professor, department of social medicine, School of Medicine, University of North Carolina at Chapel Hill; Pilar Ossorio, J.D., Ph.D., assistant professor of law and medical ethics and associate director of the Center for the Study of Race and Ethnicity in Medicine, University of Wisconsin at Madison; and Daniel B. Williams, M.D., associate professor, department of obstetrics and gynecology, School of Medicine, Washington University in St. Louis

• April 12-13: "Patenting Genetic Products," led by F. Scott Kieff and Charles R. McManis, and featuring keynote speaker Robin Jacob, M.A., L.L.B., high court judge of England and Wales and Judge of the Patents Court of England and Wales along with Jamie Boyle, J.D., professor of law, Duke University; Rochelle C. Dreyfuss, J.D., the Pauline Newman Professor of Law, New York University; Rebecca S. Eisenberg, J.D., the Robert & Barbara Luciano Professor of Law, University of Michigan; Richard A. Epstein, L.L.B., the James Parker Hall Distinguished Service Professor of Law, University of Chicago; Pauline Newman, L.L.B., Ph.D., circuit judge, United States Court of Appeals for the Federal Circuit; Jerome Reichman, J.D., Bunyan S. Womble Professor of Law, Duke University, and Joseph Straus, Ph.D., professor, Max Planck Institute for Foreign and International Patent, Copyright, and Competition Law.

During the Spring 2002 semester, Rebecca S. Dresser, J.D., the Daniel Noyes Kirby Professor of Law and Professor of Ethics in Medicine at Washington University, is teaching a related course titled "The Human Genome Project: Law, Policy, and Ethics." Students will attend both the conference and the colloquia, read and discuss pertinent material, and work in teams to investigate specific conference topics as well as other topics related to genetics, including privacy, confidentiality and discrimination; genetics in the courtroom; research and commercial uses of stored tissue samples; prenatal and presymptomatic genetic testing; and potential individual and group stigmatization from genetics research and testing.

There is no fee for attending the conference, but pre-registration is required. To register or to obtain additional information about the program, contact the Center for Interdisciplinary Studies by calling Linda McClain at 314-935-7988 or by emailing [email protected].

The Whitaker Foundation has provided major sponsorship for the program, with additional support from the Washington University School of Medicine and the School of Law.

The total MCLE hours available for attending the genome conference are 14.4 (7.2 per day). Biographies of the conference speakers are also available.

Contact information:

Jessica Roberts
Senior News Editor
Washington University in St. Louis
314-935-5251
[email protected]