Human Genome Project: Research, Medicine and Commerce


During the 2001-2002 academic year, the Washington University School of Law's Center for Interdisciplinary Studies and the School of Medicine presented the highly successful "Law and the Human Genome Project: Research, Medicine, and Commerce".  The Program consisted of a two-hour symposium introducing the fundamentals of the Human Genome; a major conference, and three subsequent colloquia, all focusing on a variety of interdisciplinary topics and addressing the legal, ethical, and regulatory advances in genetic science and technology emerging from the Human Genome Project

The conference was organized by a highly regarded committee representing various disciplines including: Susan Frelich Appleton, the Lemma Barkeloo & Phoebe Couzins Professor of Law and Associate Dean of Faculty, Washington University School of Law; Rebecca S. Dresser, the Daniel Noyes Kirby Professor of Law and Professor of Ethics in Medicine, who holds a joint appointment at the Washington University Law School and School of Medicine; F. Scott Kieff, Associate Professor of Law, Washington University; John M. Olin Senior Research Fellow in Law, Economics, and Business, Harvard Law School; Charles R. McManis, Professor of Law, Director of the Intellectual Property/Technology Law Program at Washington University, and active in the intellectual property area nationally and internationally; and Richard K. Wilson, Ph.D., Associate Professor of Genetics and Co-Director, Genome Sequencing Center at Washington University School of Medicine.

A two hour introduction to the Program, entitled "Human Genome: The Fundamentals," was held November 15, 2001, from 2-4 p.m., in the Bryan Cave Moot Courtroom at the School of Law. This lecture introduced nonscientists to background for understanding the Human Genome Project, its findings, and its ramifications for medical science and practice.  It included  fundamental concepts of modern genomics, principles of genetics, and basic definitions. The goal was to provide a context and vocabulary to further the public's understanding of this scientific milestone and to pique curiosity about the other components of the Program.  Elaine R. Mardis,Ph.D., Assistant Professor, Department of Genetics and Director, Technology Development , for the Genome Sequencing Center, Washington University; and John McPherson, Ph.D., Associate Professor, Department of Genetics, and Co-Director, Genome Sequencing Center, Washington University, led the session.

The centerpiece for the Program was the major conference January 28-29, 2002, entitled "The Human Genome Project: Expanding the Conversation."   

This initial presentation considered the broad range of social issues stemming from genetic research and its future applications and was, as expected, a topic of great interest to the general public. The conference brought together scholars, some who have given much thought to the Human Genome Project and others--experts in other fields--who were considering its implications for the first time. This initial conference not only set the stage for the three subsequent colloquia, but also helped to define the direction of future research throughout the world. Both students and the St. Louis community were afforded the opportunity to learn about the impact and effects, both present and far-reaching, of the Human Genome Project. Participants in the initial conference included:  Francis S. Collins, M.D., Ph.D., Director of the National Human Genome Institute, the National Institute of Health; Susan M. Okin, Ph.D.,  Martha Sutton Weeks Professor of Ethics in Society, Stanford University; Michael Traynor, J.D., President of the American Law Institute and Fellow for the American Association for the Advancement of Science; and Nancy S. Wexler, Ph.D., Eugene Higgins Professor of Neuropsychology, Department of Neurology and Psychiatry, Columbia University and President of the Hereditary Disease Foundation and researcher who helped discover the Huntington's Disease gene. Other distinguished panelists for the main conference were Anita L. Allen, J.D., Ph.D., Professor of Law, Yale University; Robert A. Burt, J.D., Alexander M. Bickel Professor of Law, Yale University; David Cox, M.D., Ph.D., Chief Scientific Officer, Perlegen Sciences; Gerald L. Early, Ph.D., Merle Kling Professor of Modern Letters, and Director, International Writing Center, English Department, Washington University in St. Louis; Amy Gutmann, Ph.D., Provost, Princeton University, Laurance S. Rockefeller Professor of Politics, Princeton University and Foundation Director of the University Center for Human Values and the Program in Ethics and Political Affairs; Noëlle Lenoir, J.D., Senior Counsel, Herbert Smith, Paris Office, Conseiller d'Etat, Former Justice, French Constitutional Supreme Court,  France; Joel Mokyr, Ph.D., Robert H. Strotz  Professor of Arts and  Professor of Economics and History  at Northwestern University and specializing in economic history and the economics of technological and population change; Margalit Birnbaum Mokyr, Ph.D., Professor, Department of Biochemistry and Molecular Biology, University of Illinois at Chicago; and Robert H, Waterston, M.D., Ph.D., James S. McDonnell Professor of Genetics, Washington University School of Medicine and Co-Director, Genome Sequencing Center, Washington University School of Medicine.        

The first colloquium, March 22, 2002, "Professional, Ethical, Legal, and Social Challenges for Genetic Counseling,"  addressed the new challenges for genetic counseling posed by the extensive information revealed by the Human Genome Project.  It was led by Professor Susan Frelich Appleton.

The second colloquium, April 5, 2002, and entitled "Germ Line Interventions and Human Research Ethics," was led by Professor Rebecca S. Dresser, and focused on the difficult ethical and policy questions that will be raised by proposals to conduct research on germ line interventions in humans.

The final colloquium, "Patenting Genetic Products," led by Professor F. Scott Kieff and Professor Charles R. McManis, and held April 12-13, 2002, addressed the patenting of genetic products--such as research tools and processes widely used in academia and industry. 

During the spring 2002 semester, law students were also offered the additional opportunity to enroll in a course taught by Professor Dresser entitled "The Human Genome Project: Law, Policy, and Ethics," which studied the ethical, legal, and policy issues raised by access to genetic information, genetics in the courtroom, behavioral genetics, pharmacogenetics, research and commercial uses of stored tissue samples, prenatal and presymptomatic genetic testing, and potential group and individual stigmatization from genetic research and testing. Students also  attended all four components of the program.