Hostname: page-component-68945f75b7-9klrw Total loading time: 0 Render date: 2024-08-06T08:51:43.934Z Has data issue: false hasContentIssue false
  • English
  • Français

Should We Hold the (Germ) Line?

Published online by Cambridge University Press:  01 January 2021

Erik Parens
Get access Rights & Permissions [Opens in a new window]

Extract

In 1982, the President's Commission produced its report on human gene therapy. One of that report's recommendations was to expand the Recombinant DNA Advisory Committee (RAC) to the National Institutes of Health to include a subcommittee on human gene therapy. In 1984, the Human Gene Therapy Subcommittee was established, and in 1989 it produced a document—“Points to Consider for Protocols for the Transfer of Recombinant DNA into Human Subjects”—that stated the RAC's position on what sorts of protocols it would approve.

In assessing the impact of the President's Commission report, Alexander Capron wrote,

[t]he line [the report] drew between somatic cell and germ-line therapies has shaped subsequent discussions and policy formulation. Its conclusion … that somatic cell therapy resembles medical treatment is the basic premise of the RAC subcommittee's “Points to Consider,” while the Commission's view that ethical as well as technical barriers preclude present attempts to alter germ cells continues to be generally accepted by scientists and nonscientists alike.

Type
Article
Information
Journal of Law, Medicine & Ethics , Volume 23 , Issue 2 , Summer 1995 , pp. 173 - 176
Copyright
Copyright © American Society of Law, Medicine and Ethics 1995

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Splicing Life (Washington, D.C.: United States Government Printing Office, 1982).Google Scholar
Capron, Alexander Morgan, “The Impact of the Report, Splicing Life,” Human Gene Therapy, 1 (1990): at 70 (emphasis added).Google Scholar
The somatic/germ cell distinction will be important throughout this essay. Germ cells are those involved in reproduction (ova and sperm); alterations of germ cells are passed on to future generations. Somatic cells are all of the other cells in the body; alterations of them are not passed on.Google Scholar
Wivel, Nelson A. Walters, LeRoy, “Germ-Line Gene Modification and Disease Prevention: Some Medical and Ethical Perspectives,” Science, 262 (1993): at 537. For a more tentative (and earlier) call for the same, see Walters, LeRoy, “Human Gene Therapy: Ethics and Public Policy,” Human Gene Therapy, 2 (1991): at 118.CrossRefGoogle Scholar
“Summary of the December 1–2, 1994 Recombinant DNA Advisory Committee (RAC) Meeting”: “The RAC unanimously recommended the establishment of a working group to examine the ethical issues involving in utero gene therapy; however, since the issue of germ-line gene therapy and transmission is inseparable from the issue of in utero therapy, the working group should analyze both issues and their relationship to each other.”Google Scholar
Fletcher, John C. French Anderson, W., “Germ-Line Gene Therapy: A New Stage of Debate,” Law, Medicine & Health Care, 20 (1992): 26–39; Zimmerman, Burke K., “Human Germ-Line Therapy: The Case for Its Development and Use,” Journal of Medicine and Philosophy, 16 (1991): 593–612; Cook-Deegan, Robert M., “Germ-Line Therapy: Keep the Window Open a Crack,” Politics and the Life Sciences ,3 (1994): 217–20; and Munson, Ronald Davis, Laurence H., “Germ-Line Gene Therapy and the Medical Imperative,” Kennedy Institute of Ethics Journal, 2 (1992): 137–58.CrossRefGoogle Scholar
See President's Commission, supra note 1, at 56; Motulsky, Arno G., “Impact of Genetic Manipulation on Society and Medicine,” Science, 219 (1983): at 135; and Wolff, Jon A. Lederberg, Joshua, “An Early History of Gene Transfer and Therapy,” Human Gene Therapy, 5 (1994): at 470.CrossRefGoogle Scholar
Eric Juengst names five of the other most used arguments for germ-line alteration: (1) medical utility; (2) medical necessity; (3) prophylactic efficiency; (4) respect for parental autonomy; and (5) scientific freedom (see Juengst, Eric T., “Germ-Line Gene Therapy. Back to Basics,” Journal of Medicine and Philosophy, 6 (1991): at 589–90).Google Scholar
Silverman, Paul H., Associate Chancellor, University of California-Irvine, has suggested this line of argument in an unpublished manuscript, “Human Germ-Line Gene Alteration: An Approaching Reality?.”Google Scholar
“Afterword: A Talk with the Author,” in Kundera, Milan, The Book of Laughter and Forgetting, trans. Heim, Michael Henry (New York: Penguin Books, 1981): at 229.Google Scholar
In addition to the slippery slope to enhancement argument, Juengst names four others: (1) scientific uncertainty and clinical risks; (2) consent of future generations; (3) allocation of resources; and (4) integrity of genetic patrimony. See Juengst, , supra note 8, at 590.Google Scholar
For a recent slippery slope argument, see Gardner, William, “Can Human Genetic Enhancement Be Prohibited?,” Journal of Medicine and Philosophy, 20 (1995): 65–84.CrossRefGoogle Scholar
Danks, David M., “Germ-Line Gene Therapy: No Place in Treatment of Genetic Disease,” Human Gene Therapy, 5 (1994): 151–52.CrossRefGoogle Scholar
deWachter, Maurice A. M., “Ethical Aspects of Human Germ-Line Therapy,” Bioethics, 7 (1993): at 170.Google Scholar
Human Gene Therapy Subcommittee, NIH Recombinant DNA Advisory Committee, “The Revised ‘Points to Consider’ Document,” Human Gene Therapy, 1 (1990): at 95.Google Scholar
Recombinant DNA Advisory Committee, “Selected Minutes from October 6, 1989 RAC Meeting,” Human Gene Therapy, 1 (1990): at 187.Google Scholar
For the application of this argument to the germ-line alteration question, see Lappé, Marc, “Ethical Issues in Manipulating the Human Germ Line,” Journal of Medicine and Philosophy, 16 (1991): at 629–30.CrossRefGoogle Scholar
See Human Gene Therapy Subcommittee, supra note 15, at 96.Google Scholar
See Silverman, , supra note 9.Google Scholar
Fletcher, John C., “Evolution of Ethical Debate about Human Gene Therapy,” Human Gene Therapy, 1 (1990): 55–68; Berger, Edward M. Gert, Bernard M., “Genetic Disorders and the Ethical Status of Germ-Line Gene Therapy,” Journal of Medicine and Philosophy, 16 (1991): 667–83; and Moseley, Ray, “Commentary: Maintaining the Somatic/Germ-Line Distinction: Some Ethical Drawbacks,” Journal of Medicine and Philosophy, 16 (1991): 641–47.CrossRefGoogle Scholar
Harris, John, Wonderwoman and Superman: The Ethics of Human Biotechnology (Oxford: Oxford University Press, 1992); Resnick, David, “Debunking the Slippery Slope Argument against Human Germ-Line Gene Therapy,” Journal of Medicine and Philosophy, 19 (1994): 23–40; and Miller, Henry I., “Gene Therapy for Enhancement,” The Lancet, 344 (1994): 316–17.Google Scholar
See Cook-Deegan, , supra note 6, at 220. For example, on “cheap moralizing,” see Mauron, Alex, “Germ-Line Angst and Uncertain Futures,” Politics and the Life Sciences, 13 (1994): at 231.Google Scholar
Neel, James V., “Germ-Line Gene Therapy: Another View,” Human Gene Therapy, 4 (1993): at 127.CrossRefGoogle Scholar
Anderson, Walter Truett, To Govern Evolution (Orlando: Harcourt Brace Jovanovich, 1987).Google Scholar