(NCHGR) of NIH. The U.S. Department of Energy (DOE) joined in support of the ELSI Working Group in 1989. Having recognized that the capabilities arising out of the Human Genome Initiative are likely to have a profound impact on individuals and society, NIH created the ELSI Working Group to explore such issues as fairness in the use of genetic information with respect to insurance, employment, and the criminal justice system; privacy of genetic information; and the influence of genetic information on reproductive decisions (see Appendix A and the background paper by Hanna in this volume for further descriptions of the ELSI Working Group).

Today, a sizable portion of the budgets for both NCHGR and DOE (from 3 to 5 percent) is formally designated to support studies on the identification and examination of these broader impacts of genetic science. This seems to be the first instance in which a portion of a science budget has been devoted specifically to the study of the ethical, legal, and social impacts of science. In all other instances, we have allowed the technology to develop and to be applied, and the resulting ethical, legal, and social dilemmas to arise, and then attempted to resolve them largely in retrospect.

The impact of the ELSI program is not yet clear. Arguments that it is overly academic and not adequately representative of society merit consideration (see Hanna, this volume). At the same time, however, many observers and even some critics seem to agree that the ELSI program is indeed stimulating effective ethical inquiries into genetic technologies and encouraging the molecular biology community to design their technological studies accordingly. Such an effect would be of great benefit to the genome project, and the success of this earmarked ELSI funding program could serve as a very useful model for other areas of science.

Human Fetal Tissue Transplantation Research Panel, DHHS

The NIH Human Fetal Tissue Transplantation Research Panel was convened in 1988 at the request of Assistant Secretary for Health Robert Windom. Following discussions with NIH Director James Wyngaarden about proposed research that involved the transplantation of human fetal neural tissue into patients with Parkinson's disease, Dr. Windom requested that a panel be formed to investigate the issue and formulated ten questions the panel was to address. Wyngaarden believed that the research was extremely important, but that it also had the potential to stir controversy and perhaps even to send a message to the public that NIH encouraged abortions (Childress, 1991). Windom responded to Wyngaarden's concerns by issuing a moratorium on the use of fetal tissue in federally funded transplantation research until NIH could convene a panel to deliberate the issue and offer recommendations.



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement