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  • Genetics and Ethics: Selections from Updated Scope Notes
  • Martina Darragh (bio) and Pat Milmoe McCarrick (bio)

The following annotated citations have been selected from updates to four Scope Notes on genetic issues that have appeared in previous issues of the Kennedy Institute of Ethics Journal:

  • Scope Note 17: The Human Genome Project, 1 (4): 347–62, December 1991;

  • Scope Note 22: Genetic Testing and Genetic Screening, 3 (3): 333–54, September 1993;

  • Scope Note 24: Human Gene Therapy, 4 (1): 63–83, March 1994; and

  • Scope Note 28: Eugenics, 5 (2): 163–78, June 1995.

Many authors echo the sentiments of LeRoy Walters and Julie Gage Palmer who preface their 1997 volume on the ethics of gene therapy with the comment that “. . . this is an appropriate moment for appraising the first stage” of genetic research in human beings (III, Walters and Palmer 1997). The great expectations prompted by the success of the September 1990 gene therapy protocol for treating SCID (severe combined immune deficiency) have been tempered as subsequent clinical trials produced less dramatic results. The National Institutes of Health’s 1996 review of existing protocols found that “. . . significant problems remain in all basic aspects of gene therapy” (III, United States. National Institutes of Health 1996). As plans to create DNA libraries for large-scale genome mapping are finalized, there is renewed attention to basic bioethical issues such as informed consent (I, Marshall 1996; U.S. National Center for Human Genome Research 1996). In May 1997, the Task Force on Genetic Testing of the NIH-DOE Working Group on the Ethical, Legal, and Social Implications of Human Genome Research (ELSI) published recommendations on genetic screening, covering such topics as direct marketing of testing to consumers and incorporation of new screening procedures into clinical practice (II, National Institutes of Health 1997). Finally, discussions of whether genetic interventions are a form of eugenics continue to produce deeply-felt, complex arguments on the [End Page 299] issue. The complete update for each of the Scope Notes mentioned above can be found on the National Reference Center for Bioethics Literature’s URL: or can be obtained by calling their toll-free number, 1-800-633-3849.

I. The Human Genome Project

Council of Europe, Directorate of Legal Affairs, Draft Convention for the Protection of Human Rights and the Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Bioethics. Strasbourg: Council of Europe, 1996. 11 p. [Summary published in the Bulletin of Medical Ethics (119): 18–21, June 1996. For text of final version, see pp. 277–90 in this issue of the Kennedy Institute of Ethics Journal 7 (3), September 1997.]

Genetic research is the focus of Chapter IV of this declaration, in which genetic discrimination is prohibited, genetic testing is limited to those matters pertaining to health, somatic cell gene therapy is permitted but germ-line gene therapy is prohibited, and preimplantation screening may not be used to select the sex of the child except when serious sex-linked genetic diseases are involved.

Hanna, Kathi E. The Ethical, Legal, and Social Implications Program of the National Center for Human Genome Research: A Missed Opportunity? In Society’s Choices: Social and Ethical Decision Making in Biomedicine, ed. Ruth E. Bulger, Elizabeth M. Bobby, and Harvey V. Fineberg, pp. 432–57. Washington: National Academy Press, 1995.

The author reviews efforts to carry on a public dialogue about the potential social consequences of genome research. Hanna describes James D. Watson’s creation of the Ethical, Legal, and Social Implications (ELSI) Program as part of the NIH Office of Human Genome Research and the controversy that the program engendered. She goes on to describe ELSI and its extramural grants program and suggests that “. . . because the only citizens with access to the [grant’s] process are those schooled in an academic or professional discipline . . . [ELSI research] is a reductionist process that runs the risk of ignoring the most pressing policy issues . . . [since it] can in no way guarantee fair representation of all points of view.” In addition, ELSI has no mechanism to synthesize the research it funds for distribution to Congress and to...

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