Doctors may share genetic information to help patients’ relativesBMJ 2009; 339 doi: https://doi.org/10.1136/bmj.b4031 (Published 01 October 2009) Cite this as: BMJ 2009;339:b4031
All rapid responses
The recently revised GMC guidance on confidentiality for the first
time makes specific reference to the disclosure of genetic information to
relatives of patients. Contrary to many press reports, the updated
guidance does not endorse unrestricted disclosure of genetic information
by doctors to relatives of patients, but instead merely notes that
disclosure of genetic information about a patient to relatives might be
justified in the public interest.
Whether or not there is an ethical duty in relation to disclosure of
genetic information to relatives, it is important that doctors comply with
their legal duties to avoid risk of legal liability. Whilst the legal duty
of confidence is not absolute, medical information may only be disclosed
without permission when required by law, or if disclosure is justified in
the public interest. In the case of disclosure of medical records in the
public interest, English courts have required that the disclosure be made
only to those to whom it is necessary to tell to protect the public
interest, only when the risk is real, rather than merely fanciful, and
where there is an imminent risk of physical harm to the public. The
courts balance two competing public interests: the public interest in
maintaining the relationship of trust between doctors and patients; and
the public interest in disclosure, in this case the public interest of
relatives of patients with genetic conditions having access to genetic
Difficult cases have arisen in the past, in relation to psychiatric
patients, or patients with HIV, where the disclosure of confidential
information by doctors might prevent harm to others. However, the
courts have tended to take a very strong view as to the public interest in
the maintenance of confidence in the medical profession, and it is rare
that disclosure is found by the courts to be justified. It may also be
significant that cases such as those of HIV transmission or violent
psychiatric patients involve the introduction of a new harm, such as the
risk of injury or the introduction of an infective agent; the issue with
genetic information is more usually the discovery of a pre-existing
condition and the prevention of harm. In most cases, as the GMC guidance
indicates, discussion with the patient in question, and forethought before
testing will avoid this potentially difficult problem arising. However,
should a patient persistently refuse to share genetic information with
relatives, legally, doctors should be very careful about relying upon the
GMC guidance in reaching a decision to breach their duty of confidence.
 General Medical Council, Guidance for doctors: Confidentiality,
12 October 2009, paragraphs 67-69.
 W v Edgell  1 All ER 835.
 See for example: Tarasoff v Regents of the University of CA 551 P2d
334 (CA 1976); Reisner v Regents of the University of California 31 Cal
App 4th 1195 (1995).
 Lucassen, A., Parker, M., Confidentiality and serious harm in genetics
– preserving the confidentiality of one patient and preventing harm to
relatives Eur J Hum Gen 2004; 12: 93-97.
Competing interests: No competing interests