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FEATURE: Anneke Lucassen Should families own genetic information? Yes BMJ 2007; 335: 22 [Full text]

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Genes are not so simple as beans

Peter-Marc Fortune   (9 July 2007)

Genes are not so simple as beans 9 July 2007
Peter-Marc Fortune, Consultant Paediatric Intensivist Royal Manchester Children's Hospital M27 4HA Send response to journal: Re: Genes are not so simple as beans	The arguments presented in these discussions (both ‘yes’ & ‘no’) assume an a priori knowledge that the family are all genetically related. If this is not the case the index person may or may not know about it. Either way the revelation of such information, through genetic testing, may be highly destructive to the family. In the latter case, where the index patient has chosen not to share such information, undertaking any form of counselling or testing in other family members that might uncover the truth, however inadvertently, rides roughshod over the index patients autonomy. Surely, as argued in the ‘no’ case, the onus should be in the index person to share the information with their family at their own discretion. Counselling may help them in this regard. The analogy presented in the ‘yes’ argument of the tin of beans is flawed. It the case of the beans it is very unlikely that the others that may be affected will have any interest in the index case. However, if a person is approached and offered testing for a genetic disorder, they are likely to want to know the reason for offering them the test. It would be difficult to do this without identifying both the index case and the condition. One may argue which is the right course here – but beans have nothing to do with it. I suggest that the limitations of these discussions have arisen because of their brevity, the authors have not had sufficient space to develop and explore their arguments. This perhaps reflects clinical practice where the practical application of ethical principles fall short of the ideal due to a lack of resources (usually time). We all have to work within resources in our practice but it is disappointing when we apply similar restrictions to published discussions that should enhance our understanding and not risk compromising it. Competing interests: None declared