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Human Genome News Archive Edition

Human Genome News, May 1990; 2(1)

NIH-DOE Joint Working Group on Ethical, Legal, and Social Issues Established

NIH and DOE Accepting Grant Applications
Human Genome Project research will inevitably give biomedical researchers new and powerful tools for identifying defective genes that cause diseases and for developing better treatments for the health problems these genes cause. Concerns about the applications of information and materials resulting from the Human Genome Project and from other research in human genetics have resulted in the establishment of the Joint Working Group on the Ethical, Legal, and Social Issues (ELSI) Related to Mapping and Sequencing the Human Genome. Formed by the National Center for Human Genome Research (NCHGR) and the DOE Human Genome Program, this working group will identify and address the ethical, legal, social, and economic issues that may arise with genome technology development (see related articles Joint Ethics Working Group Hosts Workshop and Juengst To Head NCHGR Ethics Program).

The working group has several goals:

  • to stimulate bioethics research and assist DOE and NIH in refining their respective research activities;
  • to identify issues likely to arise as human genetics research progresses, promote public discussion of those issues, and develop policy options to deal with them;
  • to reach out to groups likely to be affected by genome research, such as those organized around specific diseases or disabilities;
  • to promote education of professional and lay groups; and
  • to collaborate with international groups such as the Human Genome Organisation (HUGO); United Nations Educational, Scientific, and Cultural Organization (UNESCO); and the European Economic Community (EEC).

Members of the working group represent various disciplines, and each has a long-standing interest in the ethical, legal, and social issues arising from the availability of data acquired in genetic research.

Nancy S. Wexler, chair of the working group, also serves on the NIH Program Advisory Committee on the Human Genome. Wexler is a clinical psychologist in the Department of Neurology and Psychiatry at the College of Physicians and Surgeons of Columbia University and is President of the Hereditary Disease Foundation. In the 1970s she was a member of the Huntington's Disease Commission and conducted research at the National Institute of Neurological and Communicative Disorders and Stroke.

Jonathan R. Beckwith is a bacterial geneticist in the Department of Microbiology and Molecular Genetics at Harvard Medical School. Interested in genetic screening for over a decade, he has raised concerns regarding research proposals to mount longitudinal behavioral studies of individuals with an XYY karyotype and has continued to participate in public discussions about behavioral genetics.

Patricia King of Georgetown University Law Center has served on both the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research and on the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. During her career, she has worked in the areas of civil rights law and reproductive law and is interested in the impact of genetic studies on minority groups.

Victor A. McKusick has been involved in the study of human genetics for over 40 years at Johns Hopkins University. During that time he compiled the accumulated research data on human genetics into a book and an on-line computer database, both called Mendelian Inheritance in Man. The founding president of HUGO, McKusick now chairs its ethics committee.

Robert F. Murray, a physician in the Department of Pediatrics, Medicine, Oncology, and Genetics at the Howard University College of Medicine, has been involved in genetic testing and screening for more than two decades. He has worked on sickle cell and thalassemia testing programs and continues to offer genetic counseling to patients.

Thomas H. Murray, a social psychologist who has written extensively about the ethical impact of genetic testing and screening in the workplace, is the Director of the Center for Biomedical Ethics at Case Western Reserve University Medical School. He was recently elected a Fellow of the Hastings Center, where he worked for several years in the 1970s.

At its first meeting in September 1989, the ELSI working group identified nine topics of relevance to the genome project:

  • fair use of genetic test information in areas such as insurance, employment, criminal justice, education, adoption, and the military;
  • impact of genetic information on individuals;
  • personal privacy and confidentiality of genetic information;
  • impact that the dramatic increase in human genetic information will have on genetic counseling and the delivery of genetic services;
  • influence of genetic information and new technologies on reproductive decisions;
  • issues raised by the introduction of new genetic information and technologies into mainstream medical practice;
  • historical analysis of the use and misuse of genetic information and technologies;
  • issues raised regarding the commercialization of research results; and
  • conceptual and philosophical questions related to human genetics.

At the recommendation of the ELSI working group, NIH issued a program announcement in the January 26, 1990, issue of the NIH Guide to Grants and Contracts (Vol. 19, No. 4) requesting research proposals. The DOE Human Genome Program, whose request for grant applications was published in the March 21, 1990, Federal Register (p. 10486), is accepting applications for research in the areas of ethical, legal, and social issues.

Many social scientists, humanities scholars, and legal analysts are interested in the issues raised by human genetics research, and the availability of grant support from DOE and NIH should attract even more researchers.

Reported by Robert M. Cook-Deegan, NCHGR

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Human Genome Program, U.S. Department of Energy, Human Genome News (v2n1).

Human Genome Project 1990–2003

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.

Human Genome News

Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.