Genetic screening: ethical issues - Nuffield Council on Bioethics

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42 future decisions about having children could be seriously affected if information is concealed. Unexpected information can present <strong>ethical</strong> dilemmas for which there are no easy answers, or indeed any correct answers. 5.4 Even when the result has been obtained, the sample may be preserved for a number of reasons : to check the results, for future diagnostic needs, including those of the family, and for research purposes. Both the individual and the family may benefit if samples are kept in case a genetic defect could be identified at a later date. Testing of samples as a research procedure may help to improve our understanding of genetic variation and the prevalence of other genetic diseases in the population. Authorisation for such uses should have been obtained when initial consent for <strong>screening</strong> was given, even when the samples are to be used anonymously, and special care is needed to ensure the confidentiality and security of stored samples. Disclosure to family members 5.5 Our main concern, however, is not with disclosure to the individual, but where the interests of others are concerned. This raises some of the most serious <strong>issues</strong> in this report. The perceived interests of members of the same family sometimes clash. Such clashes can usually be resolved in careful discussion with experienced professionals. But we need to consider the problems that unhappily do not reach such a resolution. These problems are much more acute for X-linked and autosomal dominant diseases, as illustrated by the example in Fig E. Fig E 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.
5.6 We have reviewed existing case law, professional guidelines and current academic writing on applying the principle of confidentiality to the special circumstances of information arising from genetic <strong>screening</strong> that may be vital to the well-being or future of other family members. In such clearly defined contexts it may be appropriate to treat those family members as a ‘unit’ and to place less emphasis on individual patient autonomy. This may not always be feasible, for example where blood relations have lost contact with each other, but even in such cases the individuals being screened should be made aware of the implications for their relations. 5.7 We have based our approach on the following general principles:- 43 (i) (ii) (iii) the accepted standards of the confidentiality of medical information should be followed as far as possible; where the application of such standards might result in grave damage to the interests of other family members, then the health professionals should seek to persuade the individual, if persuasion should be necessary, to allow the disclosure of the genetic information. That task would be eased if it were accepted, and as we have recommended (paragraph 4.29) that genetic <strong>screening</strong> programmes should include in the information leaflets and the counselling a clear indication that the consequences to the family of genetic information may in some cases make it unfair to confine the information gained solely to the individual who has been screened; in exceptional circumstances, health professionals might be justified in disclosing genetic information to other family members, despite an individual’s desire for confidentiality. For example, confidentiality might justifiably be broken if an individual refused to disclose information which might avoid grave damage to other family members. 5.8 We begin by examining the issue of confidentiality, considering in particular why it is important and how it is currently protected by the law and by other means. We then ask whether there are circumstances in which the confidentiality of genetic information ought properly to be overridden to permit disclosure to those interested third parties who, it is sometimes said, have a ‘right to know.’
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Page 6 and 7: ii The broad framework provided as
Page 8 and 9: Terms of reference iv The terms of
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Page 20 and 21: 10 Chromosomal disorders 2.6 Chromo
Page 22 and 23: 12 2.13 Major scientific advances h
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Page 35 and 36: 25 children born to younger women (
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Page 46 and 47: 36 Counselling and consent 4.17 In
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10.20 We recommend that the Departm
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Genetic screening: ethical issues - Nuffield Council on Bioethics

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