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2 - Autonomy and a right not to know

Published online by Cambridge University Press:  05 September 2014

By
Jørgen Husted
Edited by
Ruth Chadwick ,
Mairi Levitt  and
Darren Shickle
Jørgen Husted
Affiliation:
Aarhus University
Mairi Levitt
Affiliation:
Lancaster University
Darren Shickle
Affiliation:
University of Leeds
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Summary

A problem out of a problem

Genetics and diseases of genetic origin inescapably involve families. Thus genetic information obtained by testing one person may contain information of the same kind on one or more other persons. These other persons are, so to speak, being tested indirectly by the original test. Now, the justification for testing the first person is the recognition that this person has an interest in knowing the relevant information. The knowledge may be sought to gain a better background for reproductive decisions or for undertaking measures preventive of future health problems caused by genetic disease or susceptibility. This leads to the conclusion that each of the other persons concerned has the same interest in knowing the information about herself or himself.

But suppose the person who has undergone the test does not want the findings to be passed on to the other family members? In its report on the ethical issues of genetic screening the Nuffield Council on Bioethics offers the following example:

A man diagnosed with a mild form of adrenoleukodystrophy (ALD), an X-linked condition that can be carried by healthy females, did not wish his diagnosis or the genetic implications to be discussed with his family. Seven years later, his niece gave birth to two successive boys who have a more severe form of ALD. The illness only came to light in them when the elder boy started to display symptoms. The mother’s sister, the man’s other niece, has also given birth to a son subsequently diagnosed with ALD. Both families are bitterly resentful that the medical services did not warn them of their genetic risk.

(Nuffield Council on Bioethics 1993, p. 42)
Type
Chapter
Information
The Right to Know and the Right Not to Know
Genetic Privacy and Responsibility
 , pp. 24 - 37
Publisher: Cambridge University Press
Print publication year: 2014

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References

Berlin, J. (1969). Two Concepts of Liberty. Oxford: Clarendon Press.Google Scholar
Brock, D. (1993). Life and Death. Cambridge University Press.CrossRefGoogle Scholar
Dworkin, G. (1988). The Theory and Practice of Autonomy. Cambridge University Press.CrossRefGoogle Scholar
Dworkin, R. (1993). Life’s Dominion. London: Harper Collins Publishers.Google Scholar
Hare, R. M. (1994). ‘Utilitarianism and Deontological Principles’, in Gillon, R. (ed.), Principles of Health Care Ethics. Chichester: John Wiley and Sons, pp. 149–59.Google Scholar
Harris, J. (1985). The Value of Life. London: Routledge.Google Scholar
Lindley, R. (1986). Autonomy. London: MacMillan.CrossRefGoogle Scholar
Macklin, R. (1992). ‘Privacy and Control of Genetic Information’, in Annas, G. J. and Elias, S. (eds.), Gene Mapping. Oxford University Press.Google Scholar
Nuffield Council on Bioethics (1993). Genetic Screening: Ethical issues. London: Nuffield Council on Bioethics.Google Scholar
Raz, J. (1986). The Morality of Freedom. Oxford University Press.Google Scholar

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