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Bioethics, Constitutions, and Human Rights

Published online by Cambridge University Press:  28 February 2024

Noëlle Lenoir
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Extract

Who would have thought twenty-five years ago that the term “bioethics,” a neologism coined by an American biologist, would have met with such success, becoming one of the cornerstones of philosophical and juridical reflection at the end of the twentieth century? For it was in 1970 that the biologist and oncologist Van Rensalear Potter published his book, Bioethics, Science of Survival.

Type
Research Article
Information
Diogenes , Volume 43 , Issue 172 , December 1995 , pp. 11 - 33
Copyright
Copyright © 1995 Fédération Internationale des Sociétés de Philosophie / International Federation of Philosophical Societies (FISP)

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References

Notes

1. J.-P Changeux, "Penser la bioéthique, un débat philosophique," in: F. Mayor, Amicorum Liber, vol. II, Brussels, 1995.

2. P.-A. Taguieff, "L'espace de la Bioéthique," in: Discours sur la Bioéthique (Mots/Les langues du politique), No. 44 (September 1995).

3. H. Jonas, The Imperative of Responsibility, Chicago, 1984.

4. Y. Madiot, "La protection internationale de la personne," in: La Personne Humaine sujet de Droit (Publications de la faculté de droit et des sciences sociales de Poitiers), Paris, 1994.

5. See the survey carried out by the UNESCO Bioethics Unit under the direction of G. Kutukdjian in: The UNESCO Courier, No. 11 (November 1994).

6. C. Ambroselli, Les Comités d'éthique, published in the series "Que sais-je?," Paris, 1990. See also S. Lebris, Etude pour le Conseil de l'Europe sur les Comités d'éthique, Strasbourg, 1994.

7. J.-P Changeux (note 1).

8. See the brochure on the GCEB, available through the General Secretariat (I. Arnal, European Commission, 200 rue de la Loi, 1040 Brussels).

9. Proceedings of the IBC, available from the Secretary General (G. Kutukdjian, UNESCO Bioethics Unit, 1 rue Miollis, 75015 Paris).

10. J.-L. Baudouin and C. Labrusse-Riou, Produire l'Homme, de quel droit?, Paris, 1987.

11. H. Yoichi and C. Sautter (eds.), L'Etat et l'individu au Japon, Paris, 1990.

12. N. Lenoir, "Bioéthique et politiques de santé publique," in: M. Berthod-Wurmser (ed.), La Santé en Europe, Paris, 1994.

13. See the report by R.Z. Qui, "Ethical Issues in Genetic Screening and Testing in a Multicultural Context," presented to UNESCO's International Bioethics Com mittee in September 1995 (Proceedings, vol. II). Qui Ren Zong is the director of the Program on Bioethics at the Chinese Academy of Social Sciences.

14. N. Lenoir, "Aspects juridiques et éthiques du diagnostic prénatal: le droit et les pratiques en vigueur en France et dans divers autres pays," in: Publications de l'Institut suisse de droit comparé. Actes du Colloque International sur '1'Analyse géné tique humaine et la protection de la personnalité', Lausanne, April 1994. See also D. Shapiro, "Genetic Testing and Screening," Report to the IBC, Proceedings, 1995.

15. M. Delmas-Marty, "Le crime contre l'humanité, les Droits de l'homme et l'irré ductible humain," in: Revue de Science Criminelle, No. 3 (July-September 1994).

16. J.-P Thomas, "La courbe en cloche ou éternel retour de l'eugénisme," in: La Revue des Deux Mondes, No. 2 (1995).

17. H. Edgar, La Thérapie génique, Report to IBC, Proceedings, 1995; P. Lehn, La Thérapie génique (Report to GCEB, 1994).

18. See the opinion of the Comité consultatif national d'éthique pour les sciences de la vie et de la santé, entitled "Génétique et médecine: de la prédiction à la prévention," No. 46 (30 October 1995).

19. J. Russ, La Pensée éthique contemporaine, published in the series "Que sais-je?," Paris, 1994.

20. N. Lenoir, "Les Etats et le droit de la bioéthique," in: Revue de Droit Sanitaire et Social, No. 2 (April-June 1995).

21. B. Mathieu, "Un juge constitutionel réservé face aux défis de la science," in: Revue Française de Droit Administratif, No. 1018 (1994). Along the same lines: the report "Pour une reconnaissance de principes matriciels en matière de protec tion constitutionelle des droits de l'homme," in: Revue Dalloz, No. 27 (1995). See also the commentary on the decision of the French Constitutional Council in: L. Favoreu and L. Philip, "Les grandes décisions du Conseil constitutionnel," Dal loz, 8th edition (1995), p. 847.

22. The principle of the non-patrimonial and non-commercial character of the human body is deeply rooted in the French juridical tradition, in particular since the first blood donation law of 1952. But such a principle is not generally accepted in all countries. Thus in the United States the debate on whether the individual has a patrimonial right to elements and products of his or her body remains intense, following a 1988 decision of the California Supreme Court in connection with the John Moore Case. The plaintiff had his claim for damages from a group of scientists dismissed who had used his blood cells because of their rare and highly interesting properties. However, the Court dismissed the plaintiff's case on the grounds of the way in which the cells had been exploited and not on the basis of any general principle associated with the non-patrimo nial character of the elements or products of the human body.

23. The question of the confidentiality of medical data is complex, and the more crucially so because economic and social agents, whether public or private, are increasingly reluctant to assume the burden of the health risks associated with certain individuals. The right protects against such a trend which is contrary to social solidarity Thus the European Court of Justice, in a decision of 5 October 1994, has taken the view that the right to privacy, contained in Article 8 of the European Human Rights Convention, covers a person's right not to have to dis close information on his or her state of health. In this particular case, a job applicant who knew that he was infected with the HIV virus was allowed to refuse an HIV test. Nevertheless, in the view of the European Court, the employer could be justified to make the recruitment of an employee subject to the results of medical tests as part of the hiring process, on the condition that his legitimate interest warrants it. See L'Idée d'humanité (Actes du Colloque des Intellectuels Juifs), Paris, 1995.

24. A. Finkielkraut, "Le fardeau de notre temps," in: ibid.

25. M. Delmas-Marty (note 15).

26. Ibid.

27. The text of the draft convention is to be found in: Dictionnaire permanent, ou bioéthique et biotechnologies, Paris, 1994.

28. M. Bedjaoui, "Le génome humain comme Patrimoine commun de l'Humanité, ou la Génétique, de la peur à l'espérance," in: F. Mayor (note 1). See also H. Gros Espiell, "Le génome humain, Patrimoine commun de l'humanité," (in press). It should be noted that, according to a decision of the French Constitutional Court of 27 July 1994, the notion of a common genetic heritage of human ity has no constitutional foundation.

29. We find here an idea similar to the one enshrined in the Preamble of the Coun cil of Europe Statutes of 1949, proclaiming adherence of the signatory states "to the spiritual and moral values that are the common heritage of their peoples."

30. 30. H. Atlan and C. Bousquet, Questions de Vie. Entre le savoir et l'opinion, Paris, 1994.