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The University of Southampton
Clinical Ethics and Law at Southampton

Research project: Limits of confidentiality in genetic medicine - Dormant

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Patients have a right to expect that their medical information is kept confidential. Gone are the days where relatives were the first to be told about - for example - a cancer diagnosis.

The complex issues of genetic data

Communication with family members is particularly important in genetics because often a result in one person can be highly relevant to their close relatives. As genetic medicine expands, it is no longer just the small speciality of clinical genetics that is confronted with these issues, but general practice and mainstream medicine will need to explore how they respect a patient's confidentiality whilst at the same preventing harm to others. Just by recording a family history, doctors may identify other people who could benefit from a test, screening or treatment that might alter their chances of developing a condition.

The Complex Issues of Genetic Data

Despite the recognition by the GMC and the Joint Committee of Medical Genetics that genetic data raise complex issues of ownership and joint interests, there is little in-depth knowledge about what different parties think about the issues raised and the implication of these for practice. This pilot study (funded by the Research Management Committee of the School of Medicine) explored the views of individuals who are members of genetic specialist interest groups and healthcare professionals.

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