Mapping and Beyond

Abstract

Mapping and Beyond Research into the genetic basis of human life has opened vast new possibilities in genetic medicine. In the future, diagnosis, prevention, and therapy might be routinely tailored to the unique genetic constitution of the individual instead of relying primarily on consideration of the individual case within a disease group. At present, international, collaborative efforts to map the human genome--that is, to identify and sequence the locus of every gene or every unit of DNA on every chromosome--dominate human genetics. The scale of the undertaking and its probable contribution to knowledge about human health make this attention understandable, as findings may contribute significantly to genetic screening, testing, and gene therapy. Anxiety has sometimes been voiced about the massive allocation of resources toward the mapping, the possibility of abuse through the intimate and private knowledge gained about individuals, and the potential for diminishing human beings to no more than a sequence of DNA base pairs. Specters of eugenics haunt the ethical consideration of such developments. To help assure that advances in genetics are made in responsible ways that respect human dignity and human values, both in the research to generate the knowledge and in its applications, the Council for International Organizations of Medical Sciences (CIOMS) convened an international, interdisciplinary forum to consider the ethical, scientific, and social ramifications of the human genome project, genetic screening, and gene therapy. One hundred and twenty-three participants from thirty nations and from differing spiritual families debated these issues from 22 through 27 July 1990 in Japan, under the auspices of CIOMS, World Health Organization (WHO), United Nations Educational, Scientific and Cultural Organization (WHO), United Nations Educational, Scientific and Cultural Organization (UNESCO), and the Science Council of Japan. Participants represented many disciplines including medicine, science, law, health policy, and the humanities. They addressed both the conduct of human genome mapping and the appropriate use and safeguards for genetic information gained. As noted by Alex Capron of the Law Center, University of Southern California, Los Angeles, and a co-chairman of the conference, all of the working groups moved quickly to pragmatic and programmatic examination of the issues, with little explicit discussion of ethical principles that would justify the conclusion drawn. This may have resulted in part from the difficulty of the scientific material and partly from a broad implicit common agreement on guiding principles that cut across cultural variation. The fundamental underlying principle for all recommendations and considerations of the conference was the protection of the dignity of the human beings involved, the enhancement of their ability to function as full human beings, and the assurance that all genetic interventions aim toward improving human and individual health. The objectives of other parties, including the state, the researcher, employers, and insurance companies, were viewed as subsidiary. Given this underlying assumption, participants agreed that identification and delineation of all human genes has much to offer. They concluded that there is nothing inherently unethical in mapping the human genome. They also called for continued debate to determine the relative priority of competing demands among scientific and other activities and to ensure funding for genome research at an appropriate level in relation to other priorities. They agreed that international debate, fostered by HUGO, UNESCO, and CIOMS, should focus on the bioethical and social issues surrounding human genome mapping and its potential applications. They further resolved that all countries should benefit from the human genome project and participate in the social and ethical discussions, even though not all countries have the resources to conduct genome research and to develop new technology; developing nations may benefit particularly from the simple, rapid, and inexpensive identification of pathogenic organisms that molecular genetic techniques connected with genome mapping might yield. …