Guidance on patient confidentiality and genetic diseases

29 September 2009

New guidance released by the UK General Medical Council (GMC) says that doctors may in some circumstances share confidential genetic information about patients with their relatives against the wishes of the patient. The guidance recognises that the obligation of confidentiality is not always absolute, and that information about an individual may be disclosed without their consent if (and only if) it is necessary to prevent serious harm to another person.

For any inherited form of disease, doctors will explain to a patient if family members may also be at risk of the same condition; it is suggested that doctors should ask patients what information they would like to share, with whom, and under what circumstances. For serious genetic diseases - for example, hereditary forms of cancer, where regular screening and prompt treatment can make it much more likely that affected people will survive - if patients cannot be persuaded to tell relatives who are at risk, clinicians may, having weighed up the risks and benefits for both patient and relatives, decide to inform them. Similarly, if children have been adopted, doctors could decide to take steps to let them know they are at risk. The guidance emphasises measures that should be taken to protect the identity of the original patient if possible. Consultant Dr Frances Flinter said that doctors could trace relatives via the NHS and get in touch indirectly via their own doctors (see Times news article).

Dr Henrietta Campbell, who chaired the GMC’s working group on confidentiality, said: “This guidance makes clear that, in the first instance, doctors should explain to a patient if their family might be at risk of inheriting a condition. In those circumstances, most will readily share information about their health. However, if a person refuses, it is the responsibility of the doctor to protect those who may be at risk” (see press release).

The new guidance, Confidentiality, addresses broad issues of medical confidentiality, setting out the principles that doctors must follow in respecting the privacy of patients, and looking at the ethical and legal factors that influence decision-making. The general guidance is supported by supplementary guidance on various specific situations such as reporting serious communicable diseases, or concerns about fitness to drive. The revised guidance was produced following a public consultation, to which the PHG Foundation responded last year, and will come into effect on 12 October 2009.

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