Hostname: page-component-78c5997874-t5tsf Total loading time: 0 Render date: 2024-11-05T04:31:43.179Z Has data issue: false hasContentIssue false

Informed Consent in the Human Genome Enterprise

Published online by Cambridge University Press:  29 July 2009

Amnon Goldworth
Affiliation:
A philosopher and Visiting Scholar at the Center for Biomedical Ethics, Stanford University, Stanford, California.

Extract

When Jean-Paul Sartre, the French existentialist philosopher, declared some four decades ago that man makes himself, this assertion was based on Sartre's belief that human beings do not possess an essential human nature. Man's self creation had to do with his freedom to choose the roles that he played or could play, and their attendant effects on his attitudes and responsibilities. It said nothing about his freedom to alter his biological nature.

Type
Special Section: Designs on Life: Choice, Control, and Responsibility in Genetic Manipulation
Copyright
Copyright © Cambridge University Press 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

Notes

1. This paper is extrapolated from Standards of disclosure in informed consent in Goldworth, A, Silverman, W, Stevenson, DK, Young, EWD, Eds. Ethics and Perinatology: Issues and Perspectives. Oxford: Oxford University Press, 1995.Google Scholar

2. Katz, J. “Ethics and clinical research” revisited: a tribute to Henry K.Beecher. Hastings Center Report, 1993;23:34.Google Scholar

3. See note 2. Katz, . 1993;23:34.Google Scholar

4. Andrews, LB, Fullarton, JE, Holtzman, NA, Motulsky, AG. Assessing Genetic Risks. Implications for Health and Social Policy. Washington, DC: National Academy Press, 1993 (prepublication copy). Executive Summary 18.Google Scholar

5. Barber, B. The ethics of experimentation with human subjects. Scientific American 1976;234:2531.CrossRefGoogle ScholarPubMed

6. Adams, RB, Shea-Stonum, M. Toward a theory of control of medical experimentation with human subjects: the role of compensation. Case Western Reserve Law Review 1975;25:608–9.Google Scholar

7. Applebaum, PS, Lidz, CW, Meisel, A. Informed Consent: Legal Theory and Clinical Practice. New York: Oxford University Press, 1987:139.Google Scholar

8. Schloendorff v. Society of New York Hospitals, NY Supreme Court, Vol. 211, NY, 1914:129–30.

9. Salgo v. Leland Stanford Jr. University Board of Trustees, 317 P 2d 170 (Cal. App. 1957).

10. Natanson v. Kline, 350 Pacific Reporter; 2d series 1960:1106.

11. Canterbury v. Spence, US App. DC; 464 F 2d 772; 1972:787.

12. For Canadian policy see Gilmore, A. The nature of informed consent. Canadian Medical Association Journal 1985;132:11981203.Google ScholarPubMed

13. Mason, JK. Medico-Legal Aspects of Reproduction and Parenthood. Hants: Dartmouth Publishing Co., 1990:80.Google Scholar

14. Shaw, J. Informed consent: a German lesson. International and Comparative Law Quarterly 1986;35:864–90.CrossRefGoogle ScholarPubMed The subjective standard has also had some application in the United States since the Okla homa Supreme Court decision in Scott v. Bradford (1979). See Mazur, VJ. Why the goals of informed consent are not realized. Journal of General Internal Medicine 1988;3:370–9.CrossRefGoogle Scholar

15. See note 7. Applebaum, et al. 1987:139.Google Scholar

16. See note 7. Applebaum, et al. 1987:139.Google Scholar

17. Faden, RR, Beauchamp, T. A History and Theory of Informed Consent. New York: Oxford University Press, 1986:31.Google Scholar

18. For additional criticisms of the professional practice and reasonable person standards, see Brody, H. Transparency: informed consent in primary care. Hastings Center Report 1989:59.CrossRefGoogle ScholarPubMed

19. Relman, AS. What market values are doing to medicine. The Atlantic Monthly 1992:99106.Google ScholarPubMed

20. Hilfiker, D. A doctor's view of modern medicine. New York Times Magazine 1986:46.Google Scholar