Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
Human Genome News, July 1991; 3(2)
On March 7-9 the Health Law and Policy Institute of the University of Houston sponsored the conference "Legal and Ethical Issues Raised by the Human Genome Project." Underwritten by a grant from the NIH National Center for Human Genome Research, the conference was a large and successful interdisciplinary meeting to explore the ethical, legal, and social implications of using data produced by the Human Genome Project. Over 230 people from North America, Europe, and Asia attended. Presenters and major topics discussed are listed below.
Genome mapping and sequencing, technology issues in genome research, clinical applications, and legal challenges.
Presenters: Victor McKusick (Johns Hopkins University Hospital), Charles Cantor (Lawrence Berkeley Laboratory), Thomas Caskey (Baylor College of Medicine), and Alexander Capron (University of Southern California Law Center).
Possible limitation by law of the right to procreate, genetic screening and the treatment of newborns, and the effect of genome project data on malpractice litigation.
Presenters: John Robertson (University of Texas Law School), Ellen Wright Clayton (Vanderbilt University School of Law), and Lynn Fleisher (Sidley and Austin).
The legal right to medical confidentiality and the effect of genetic information on human identity.
Presenters: Michael Conneally (Indiana University Medical Center), Harold Edgar (Columbia University School of Law), and Dan Brock (Brown University).
Copyright and patent issues, domestic and international technology transfer, and DNA forensics.
Presenters: Iver Cooper (Browdy and Neimark), Geoffrey Karney (Dickstein, Shapiro, and Morin), and Robyn Nishimi (Office of Technology and Assessment, U.S. Congress).
Presenters: Mark Rothstein (Health Law and Policy Institute), Rob Bier (American Council of Life Insurance), and Thomas Murray (Case Western Reserve University School of Medicine).
Alan Weisbard (University of Wisconsin Medical School) was the conference summarist.
Other speakers included NBC News Science Correspondent Robert Bazell and U.S. Representative Mike Andrews (D-Texas). Bazell spoke of the difficult but important task of informing the public about genome issues. Noting the limitations of network television reporting, Bazell emphasized the need for scientists and health policy experts to become involved in ensuring that the public is provided with accurate and timely information. Andrews addressed the role of Congress in funding and in enacting legislation to deal with legal issues arising from availability of genome project information.
Conference proceedings will be available this fall. Conference notebooks, video tapes, and audio tapes may be obtained now.
The National Center for Human Genome Research announces the availability of a handbook, Program on Ethical, Legal, and Social Implications of Human Genome Research: A Guide for Applications. This handbook is designed to assist ELSI applicants in tailoring their proposals to forms designed for biology researchers. It describes the NIH review process from application preparation through funding and gives advice on avoiding problems previously encountered by applicants. Copies of the handbook may be obtained by contacting Elinor Langfelder at 301/496-7531.
Reported by Mark Rothstein
Health Law and Policy Institute
University of Houston Law Center Houston, Texas 77204-6381
The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v3n2).
The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.
Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.