"Law and the Human Genome Project:
Research, Medicine, and Commerce

Many scientists believe the Human Genome Project will mark this century as the "century of the human gene." By mapping the human genome, the Human Genome Project lays the foundation for analyzing what the genomics revolution means for evolving law and policy. It also presents great anticipation for monumental studies in medicine, while generating controversy and fear of a brave, new genetic world. 

During the 2001-02 academic year, the Washington University School of Law's Center for Interdisciplinary Studies and the School of Medicine will co-sponsor "Law and the Human Genome Project: Research, Medicine, and Commerce. " This program, consisting of a major conference and three subsequent colloquia focusing on a variety of interdisciplinary topics, will address the legal, ethical, and regulatory advances in genetic science and technology emerging from the Human Genome Project. 

Coordinating the program is a highly regarded committee representing various disciplines. Members include Susan Frelich Appleton, the Lemma Barkeloo & Phoebe Couzins Professor of Law, associate dean of faculty at the School of Law, and a nationally recognized expert on family law; Rebecca S. Dresser, who holds joint appointments with the Washington University School of Law and the Medical Humanities Program in the School of Medicine; Charles R. McManis, director of the LLM Program in Intellectual Property and Technology Law at Washington University and a professor of law active in the intellectual property area, both nationally and internationally; John N. Drobak, professor of law and professor of economics at Washington University and director of the Center for Interdisciplinary Studies; and Richard K. Wilson, PhD, associate professor of genetics and co-director of the Genome Sequencing Center at the Washington University School of Medicine. Dr. Wilson and Robert K. Waterston, MD, PhD, the James S. McDonnell Professor of Genetics, head of the Department of Genetics at the School of Medicine, and co-director of the Genome Sequencing Center, joined other renowned researchers to celebrate completion of the human genome's working draft last year. 

The centerpiece for the program is the major conference scheduled for January 28-29, 2002, entitled "The Human Genome Project: Expanding the Conversation." This initial presentation will consider the broad range of social issues stemming from genetic research and its future applications. This session, expected to be of great interest to the general public, will feature scholars, lawyers, and doctors who will provide their perspectives on the future of genetic research and its applications. It will not only set the stage for the subsequent colloquia, but also help define the direction of future research for scholars throughout the world. Professor Susan Appleton explains, "The program will bring together leaders and scholars from various disciplines, some of whom have given much thought to the genomics revolution and others who will be considering its implications for the first time. This was important in planning the conference. We want a broad range of disciplines represented so as to thoroughly examine the genomics revolution and evolving law and policy."

World-renowned experts and scholars who will participate in this initial conference include the following: 

Francis Collins, MD, director, National Human Genome Research Institute, National Institutes of Health

Michael Traynor, JD, president, American Law Institute; fellow, American Association for the Advancement of Science

Nancy Wexler, MD, the Eugene Higgins Professor of Neuropsychology, Department of
Neurology and Psychiatry, Columbia University; president, Hereditary Disease Foundation; researcher who helped discover the Huntington's Disease gene

Robert Burt, JD, the Alexander M. Bickel Professor of Law, Yale Law School

Anita Allen Castellitto, JD, PhD, professor of law, University of Pennsylvania

David Cox, MD, PhD, director; Stanford Human Genome Center; professor of medicine in genetics, Stanford

Gerald Early, PhD, the Merle Kling Professor of Modern Letters, Departments of English & of African and Afro-American Studies, Washington University in St. Louis 

Amy Gutmann, PhD, provost designate and the Laurance S. Rockefeller Professor of Politics, Princeton University; founding director; University Center for Human Values and the Program in Ethics and Political Affairs

Noelle Lenoir, justice-Administrative Supreme Court; justice-Constitutional Supreme Court, Paris 

Joel Mokyr, PhD,  Robert H. Strotz Professor of Arts and Sciences, and Professor of Economics and History, Northwestern University

Margalit Birnbaum Mokyr, PhD, professor; Department of Biochemistry and Molecular Biology, University of Illinois at Chicago

Robert H. Waterston, MD, PhD, the James S. McDonnell Professor of Genetics, Washington University School of Medicine

Colloquium: "Professional, Ethical, Legal, and Social Challenges for Genetic Counseling"

The first colloquium, scheduled for March 22, 2002, will speak to the new challenges for genetic counseling posed by the extensive information revealed by the Human Genome Project. First, existing law and practice reflect variation in training and expertise among those who provide genetic counseling, with some critics calling for more uniform professional standards. The Human Genome Project, with all the new information it will provide, will undoubtedly give this debate new force. Should genetic counseling be a distinct profession? Or is
such counseling a function that other health care providers, such as family physicians and obstetricians, properly perform? Related questions include duties of confidentiality vs. duties of disclosure, the costs and burdens of enhanced knowledge and autonomy, and the impact on family relationships. With a focus on genetic counseling, a number of different disciplines, including medicine, science, social work, law, and some of the social sciences, can profitably explore together and exchange ideas on the consequences of the Human Genome Project. 

Colloquium: "Germ Line Interventions and Human Research Ethics"

This second colloquium is scheduled for April 4-5, 2002. Scientists predict that
knowledge produced in the Human Genome Project will improve health and welfare through adding or changing genes in embryonic cells. These changes could affect children resulting from the embryos and be inherited by future generations.
Commonly referred to as "germ line gene therapy," these procedures might be used in attempts to add disease resistance, intelligence, and other enhancements to children. Research findings, however, first must demonstrate that such interventions are safe and effective ways of producing benefits. This colloquium will address the difficult ethical and policy questions that will be raised by proposals to conduct research on germ line interventions in humans. 

Colloquium: "Patenting of Genetic Products"

This final colloquium, scheduled for April 12-13,2002, will address the patenting of genetic products-such as research tools and processes widely used in academia and industry. In addition, the European Union now provides a new form of intellectual property protection for databases. In the last congressional session, two bills addressing database protection were introduced (though not enacted), and negotiations are currently under way for introduction of a compromise bill. Both the extent to which genetic information should be patentable and the extent to which databases should be protected as intellectual property are controversial issues with longranging effects, which this colloquium will examine. Intellectual property experts and prominent leaders in business and government will be invited to participate in this final segment of the program.

Additional Course: "The Human Genome Project: Law, Policy, and Ethics"

During the 2002 spring semester, law students will be provided the additional
opportunity to enroll in a course taught by Rebecca S. Dresser, professor of law and professor of ethics in medicine. This course will address 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 will attend all four Center conferences.

It is anticipated the program will generate highly innovative, interdisciplinary scholarship into the legal, ethical, and regulatory aspects of the Human Genome Project.

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