Highlights from this issue

Genetic testing now allows us to reliably predict whether people will develop certain late-onset genetic conditions such as Huntington disease. If you were at risk for a genetic disease which will only take effect in the distant future, would you want to know now whether you will later develop this...

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Main Author: Kahane, Guy (Author)
Format: Electronic Article
Language:English
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Published: BMJ Publ. 2012
In: Journal of medical ethics
Year: 2012, Volume: 38, Issue: 9, Pages: 517-518
Online Access: Volltext (JSTOR)
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520 |a Genetic testing now allows us to reliably predict whether people will develop certain late-onset genetic conditions such as Huntington disease. If you were at risk for a genetic disease which will only take effect in the distant future, would you want to know now whether you will later develop this disease? This can be a profoundly difficult question for many. But from a clinical point of view, the question is often relatively simple: we should let patients decide whether to undergo such genetic testing. It's their difficult decision to make. Things get more complicated when we consider the use of predictive genetic testing in minors, for conditions that will only manifest themselves in adulthood. Many oppose this kind of testing. They think we should wait until the child grows older, and can decide for herself. Others object that this ignores the interests of the child, as well as those of the parents, who could, for example, make appropriate future plans. This ethical debate has been going on for several decades. The important feature article by Cara Mand and colleagues (See page 519, Editor's choice) that opens this issue doesn't directly enter into this debate. Instead, it takes a bird-eye view of how the debate has evolved since the seminal first articles of the 90s. On the basis of a comprehensive review of the relevant literature, Mand and her colleagues have identified 53 articles focusing on this ethical issue, which they then proceed to analyse using interpretative content analysis. In this way, they were able to chart the evolution of arguments for and against predictive genetic testing in minors for conditions for which such testing provides no immediate medical benefit. The picture that emerges is interesting, and perhaps disturbing: the very same arguments appear to be repeated by either side … 
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