BMJ  2004;329:165-167 (17 July), doi:10.1136/bmj.329.7458.165

Education and debate

Ethics in practice

Genetic information: a joint account?

¹ Oxford Genetics Knowledge Park, Ethox Centre, University of Oxford, Oxford OX3 7LF, ² Wessex Clinical Genetics Service, Princess Anne Hospital, Southampton SO16 5YA

Does genetic information belong to the patient from whom it was obtained or to the whole family? The way in which this unavoidable question is answered has profound implications for the future of clinical practice in genetics

The first 150 words of the full text of this article appear below.

Case history

Helen Cross's 4 year old son has just had Duchenne's muscular dystrophy diagnosed. Genetic testing confirms the diagnosis and shows that she is a carrier for the mutation. Mrs Cross's sister, Penelope Yates, is 10 weeks pregnant. Mrs Yates's obstetrician referred her to the genetics team after she told him that her nephew had speech and development delay. She told him that although she was not close to her sister and had not discussed it with her, she was concerned about the implications for her own pregnancy. In her discussions with the clinical geneticist (who did not know at this stage that both sisters were patients in the same clinic) Mrs Yates made it clear that she would consider terminating a pregnancy if she knew that the fetus was affected with a serious inherited condition.

Speech and development delay are features of several conditions and would not of themselves indicate . . . [Full text of this article]

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The issues

What are the options?

Conclusions

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