What do I need to know about the sharing of genetic information?
One of the fundamental ethical obligations owed by all health professionals to their patients is that of confidentiality. However, there may be some conflict between confidentiality and disclosure when dealing with genetics and genomics. This is because one person’s genetic information may also have implications for their family members.
Health professionals can find it difficult to know how to preserve the confidentiality of one patient and at the same time alert a family member of their risk of a particular condition. One way of doing this is to restrict the information that is provided to relatives. For example, if the clinical details about an index patient remain confidential, then relatives can be alerted that they might be at risk of developing a condition because of a family history (they already know about), or because of other information the clinician does not need to specify. This provides a way of alerting relatives that does not breach the confidence of the index patient. Providing information about a familial risk is not the same as disclosing personal medical information about a relative, even if a relative subsequently uses this to make inferences about others.
Codes of professional practice recognise the importance of keeping personal identifiable information confidential. For example, the General Medical Council recognises the general obligation to keep information confidential but considers that in certain circumstances an exception may be made: disclosure to others without consent is justified “if failure to do so may expose others to a risk of death or serious harm.” The level of risk that would justify disclosure without consent is not defined, but it is made clear by the GMC that in certain situations health professionals may be faced with genetic information about one person, which relatives might benefit from knowing. Where the interests of a patient and relatives conflict, such as in the disclosure of genetic information, the GMC states that if a patient refuses to disclose relevant information to relatives, clinicians need to “balance their duty to make the care of their patient their first concern” against their “duty to help protect another person from serious harm”. However, in contrast to its more general advice about breaching confidence, the GMC also states that doctors should not disclose the patient’s identity when contacting relatives and advising them about the risks they face, thus acknowledging that familial and individual information might be separable. (paragraphs 73-76 in the GMC document in the button below).
The second button contains a link to the 2nd edition of guidance on genetic testing and sharing genetic information from the Joint Committee on Medical Genetics (a third edition is currently in preparation)
In recognition of the potential conflict between confidentiality and disclosure relating to genetic information, guidance documents and national guidelines have been developed to support the practice of all health professions.