Genetic screening: ethical issues - Nuffield Council on Bioethics

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84 9.3 We emphasise that there should be a review of <strong>screening</strong> for each condition. Although <strong>screening</strong> may become increasingly automated so that many conditions are screened for simultaneously, each condition needs to be separately reviewed. This is because each may give rise to particular <strong>ethical</strong> problems depending on the nature of the condition, its severity, its variability and its likely onset. One of the important variables will be the availability and success rate of treatment for those suffering from the condition; this may well change radically as medical understanding of genetic conditions advances. 9.4 We suggest that a central coordinating body should be established to undertake such reviews and should be notified of all pilot studies in progress. The reviews should result in the publication of the considerations that led to the coordinating body’s decisions. In this way public understanding and public accountability can be brought to bear. The importance of such understanding and accountability has been argued in Chapter 8. 9.5 The Department of Health would appear to be the appropriate public body to decide, in consultation with the appropriate professional bodies, what form such a central coordinating body should take. In the same context the Department should take the lead in formulating the detailed criteria for introducing genetic <strong>screening</strong> programmes into routine practice. As a contribution to the discussion of such criteria, we suggest they should include the following:- (i) (ii) (iii) (iv) (v) (vi) the aims and purposes of the entire programme; the predictive power and level of accuracy of the particular <strong>screening</strong> test; the value to those being screened of the knowledge gained. For each programme this should have been researched as an integral part of the follow-up to the pilot programme; the availability of therapy for the particular condition, accepting that lack of treatment does not necessarily mean that <strong>screening</strong> is not worthwhile; the potential social implications; and the resource costs. 9.6 The central coordinating body should review genetic <strong>screening</strong> programmes and monitor their implementation and outcome.
85 Conclusion and recommendation 9.7 We recommend that the Department of Health in consultation with the appropriate professional bodies formulate detailed criteria for introducing genetic <strong>screening</strong> programmes, and establish a central coordinating body to review genetic <strong>screening</strong> programmes and monitor their implementation and outcome.
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Genetic screening: ethical issues - Nuffield Council on Bioethics

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