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Published by the ESRC Genomics Network, Genomics, Society and Policy is a peer reviewed online journal that provides an outlet for interdisciplinary research on the social, ethical and legal aspects of genomics and related emergent technologies such as nanotechnology and stem cell research.

Back to list of articles in Vol 6, No.3

Volume 6, No. 3

The sense of proportion: two thoughts about the governance of direct-to-consumer genetic testing for children

Peter Mills

Abstract

There is an established consensus in clinical ethics around the position that genetic testing of children is morally justified only when there are important medical benefits to be obtained from the testing that cannot otherwise be obtained and that should not be delayed. (I’ll call this ‘the presumption to defer’.) This position is expressed by a growing number of official and professional bodies and is now increasingly codified, for example, in the genetic testing protocol of the Council of Europe Convention on Human Rights and Biomedicine. This is a position with which the Nuffield Council on Bioethics, in its report Medical Profiling and Online Medicine, substantially agrees. This article sets out some brief parerga concerning the grounds on which positions concerning the control of genetic testing may be established and the way in which they may be given effect.

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