Freedom and a right (not) to know

Bioethics

Volumn 12, Issue 1, 1998, Pages 49-63

  Räikkä, Juha ^a  

^a NONE

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[No Author keywords available]

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EID: 0346303993     PISSN: 02699702     EISSN: None     Source Type: Journal    
DOI: 10.1111/1467-8519.00092     Document Type: Article

References (28)

1. John Harris, The Value of Life (Routledge, London, 1985), 209.
2. Ruth Chadwick, 'The Philosophy of the Right to Know and the Right Not to Know', a Lecture held at Doing the Decent Thing with Genes congress, Turku Finland, August 9-11, 1995 . Cf. her 'The Right to Know and the Right not to Know', a Lecture at Euroscreen Plenary Meeting, November 4, 1995.
3. Ruth Chadwick, 'The Philosophy of the Right to Know and the Right Not to Know', a Lecture held at Doing the Decent Thing with Genes congress, Turku Finland, August 9-11, 1995 . Cf. her 'The Right to Know and the Right not to Know', a Lecture at Euroscreen Plenary Meeting, November 4, 1995.
4. John Christman, 'Constructing the Inner Citadel: Recent Work on the Concept of Autonomy'. Ethics 99 (1988), 110-111.
5. Cf. Juhani Pietarinen, 'Rationality and Mental Inconsistencies'. Rechtstheorie, Beiheft 12 (1991).
6. Cf. Richard Lindley, Autonomy (Macmillan, Hong Kong 1986), 63-69.
7. See F.J. Ingelfinger, 'Informed (But Uneducated) Consent' in R. Munson (Ed.) Intervention and Reflection - Basic Issues in Medical Ethics (Wadsworth, Belmont, 1988), 302.
8. Douglas Husak, Drugs and Rights (Cambridge University Press, Cambridge, 1992), 82.
9. Joel Feinberg, 'Autonomy' in his Harm to Self (Oxford University Press, New York, 1986), 32. Italics added.
10. Amartya Sen's discussion on goal rights is relevant here. If a person has a goal right to X, then there is at least one agent who has an obligation to help her to X. See e.g. his 'The Right to Take Personal Risks' in D. MacLean (ed.) Values at Risk (Rowman & Allanheld, Totowa, 1986. See also Sen's 'Rights and Agency', Philosophy and Public Affairs 11 (1982), 3-29.
11. Amartya Sen's discussion on goal rights is relevant here. If a person has a goal right to X, then there is at least one agent who has an obligation to help her to X. See e.g. his 'The Right to Take Personal Risks' in D. MacLean (ed.) Values at Risk (Rowman & Allanheld, Totowa, 1986. See also Sen's 'Rights and Agency', Philosophy and Public Affairs 11 (1982), 3-29.
12. Cf. Feinberg, 'Autonomy', 28; Christman, 'Constructing the Inner Citadel: Recent Work on the Concept of Autonomy', 110.
13. Cf. Feinberg, 'Autonomy', 28; Christman, 'Constructing the Inner Citadel: Recent Work on the Concept of Autonomy', 110.
14. To define the content of a right is a separate matter from deciding whether the right should be respected by negative or positive obligations. I take it for granted here that all rights correspond (or imply) some obligations (or duties) at least to someone or something. Of course, a notion of right can be used in various senses. See e.g. Wesley Hohfeld, Fundamental Legal Conceptions as Applied in Juridical Reasons (Yale University Press, London, 1964).
15. In Gerald Dworkin's view, for example, this is so. See his 'The Concept of Autonomy' in R. Haller (ed.) Science and Ethics (Rodobi, Amsterdam, 1981), 203-213.
16. Allen Buchanan, 'The Limits of Proxy Decision-Making' in R. Sartorius (ed.) Paternalism (University of Minnesota Press, Minneapolis, 1983), 154. Cf. Benjamin Freedman, 'A Moral Theory of Consent' in R. Munson (ed.), Intervention and Reflection - Basic Issues in Medical Ethics, 304-307. Buchanan does not accept the reasoning he considers.
17. Allen Buchanan, 'The Limits of Proxy Decision-Making' in R. Sartorius (ed.) Paternalism (University of Minnesota Press, Minneapolis, 1983), 154. Cf. Benjamin Freedman, 'A Moral Theory of Consent' in R. Munson (ed.), Intervention and Reflection - Basic Issues in Medical Ethics, 304-307. Buchanan does not accept the reasoning he considers.
18. To determine what is the content of a right to self-determination is to determine exactly what are the normal circumstances in which 'others' could have a justified claim against one's decision. To determine exactly when a right to self-determination should be respected (i.e. when it is 'in force') is to determine what are the other circumstances in which one's decisions concerning 'only herself' could justifiably be overridden.
19. See Sherman Elias et al, 'Carrier Screening for Cystic Fibrosis' in G.J. Annas & S. Elias (eds.) Gene Mapping (Oxford University Press, New York, 1992), 192. The issue is also discussed by Ruth Macklin in her 'Privacy and Control of Genetic Information' in G.J. Annas & S. Elias (eds.) Gene Mapping, 170. Macklin writes that 'If a physician is unable to persuade the patient that a relative could receive substantial benefit from knowing genetic information, it is ethically permissible for the physician to inform the relative'. She didn't make clear whether this permission holds in her view even if a relative asks not to be informed. See further James Childress and Kenneth Casebeer, 'Public Policy Issues in Genetic Counseling' in T. Shannon (ed.) Bioethics (Paulist Press, New Jersey, 1987), 439-442. For a related discussion, see Patricia Greenspan, 'Free Will and the Genome Project'. Philosophy & PMublic Affairs 22 (1993), 31-43.
20. See Sherman Elias et al, 'Carrier Screening for Cystic Fibrosis' in G.J. Annas & S. Elias (eds.) Gene Mapping (Oxford University Press, New York, 1992), 192. The issue is also discussed by Ruth Macklin in her 'Privacy and Control of Genetic Information' in G.J. Annas & S. Elias (eds.) Gene Mapping, 170. Macklin writes that 'If a physician is unable to persuade the patient that a relative could receive substantial benefit from knowing genetic information, it is ethically permissible for the physician to inform the relative'. She didn't make clear whether this permission holds in her view even if a relative asks not to be informed. See further James Childress and Kenneth Casebeer, 'Public Policy Issues in Genetic Counseling' in T. Shannon (ed.) Bioethics (Paulist Press, New Jersey, 1987), 439-442. For a related discussion, see Patricia Greenspan, 'Free Will and the Genome Project'. Philosophy & PMublic Affairs 22 (1993), 31-43.
21. See Sherman Elias et al, 'Carrier Screening for Cystic Fibrosis' in G.J. Annas & S. Elias (eds.) Gene Mapping (Oxford University Press, New York, 1992), 192. The issue is also discussed by Ruth Macklin in her 'Privacy and Control of Genetic Information' in G.J. Annas & S. Elias (eds.) Gene Mapping, 170. Macklin writes that 'If a physician is unable to persuade the patient that a relative could receive substantial benefit from knowing genetic information, it is ethically permissible for the physician to inform the relative'. She didn't make clear whether this permission holds in her view even if a relative asks not to be informed. See further James Childress and Kenneth Casebeer, 'Public Policy Issues in Genetic Counseling' in T. Shannon (ed.) Bioethics (Paulist Press, New Jersey, 1987), 439-442. For a related discussion, see Patricia Greenspan, 'Free Will and the Genome Project'. Philosophy & PMublic Affairs 22 (1993), 31-43.
22. See Sherman Elias et al, 'Carrier Screening for Cystic Fibrosis' in G.J. Annas & S. Elias (eds.) Gene Mapping (Oxford University Press, New York, 1992), 192. The issue is also discussed by Ruth Macklin in her 'Privacy and Control of Genetic Information' in G.J. Annas & S. Elias (eds.) Gene Mapping, 170. Macklin writes that 'If a physician is unable to persuade the patient that a relative could receive substantial benefit from knowing genetic information, it is ethically permissible for the physician to inform the relative'. She didn't make clear whether this permission holds in her view even if a relative asks not to be informed. See further James Childress and Kenneth Casebeer, 'Public Policy Issues in Genetic Counseling' in T. Shannon (ed.) Bioethics (Paulist Press, New Jersey, 1987), 439-442. For a related discussion, see Patricia Greenspan, 'Free Will and the Genome Project'. Philosophy & PMublic Affairs 22 (1993), 31-43.
23. Cf. e.g. David Brink, 'Moral Conflict and Its Structure', The Philosophical Review 103 (1994), 215-248.
24. Cf. Joel Feinberg, 'Suicide and the Inalienable Right to Life' in Suicide: The Philosophical Issues (Peter Owen, London, 1981), 228.
25. For a discussion of a general right to know, see e.g. Allen Buchanan, 'Medical Paternalism' in R. Sartorius (ed.) Paternalism, 7071.
26. An obligation not to give information to a person is different from an obligation not to prevent a person from avoiding information: Person A can certainly prevent person B from avoiding information even if A does not give information to B.
27. Cf. David Ost, 'The 'Right' Not to Know', The Journal of Medicine and Philosophy 9 (1984), 301-312.
28. C.S. Lewis, Studies in Words (Cambridge University Press, Cambridge, 1961), 124-5.