Published 1 October 2009, doi:10.1136/bmj.b4031
Cite this as: BMJ 2009;339:b4031

News

Doctors may share genetic information to help patients’ relatives

¹ BMJ

Clinical geneticists and medical ethicists have welcomed guidance from the General Medical Council that says that doctors may share confidential genetic information to protect a patient’s relatives, even if the patient objects.

The guidance focuses explicitly for the first time on genetic information that could benefit a family member as a possible exception to the rule that patients’ data must be kept confidential.

Previous advice in 2004 stated only the broad rule that doctors could disclose patients’ data if the benefits to an individual or society outweighed the public’s and the patient’s interest in keeping the information confidential.

The new advice follows advances in medical science and a recommendation by the Human Genetics Commission that doctors should be told explicitly that it may be justified to reveal information in the interests of relatives. The knowledge could, for example, alert family members with a genetic predisposition to breast or bowel cancer to the need for surveillance or treatment, or influence decisions on reproduction.

"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," said Henrietta Campbell, a former chief medical officer in Northern Ireland, who chaired the GMC’s working group on confidentiality.

"However, if a person refuses, it is the responsibility of the doctor to protect those who may be at risk."

Ethicists and clinicians broadly support the guidance but mentioned matters that were not covered, suggesting that more detailed guidance could usefully be developed.

Ainsley Newson, senior lecturer in biomedical ethics at Bristol University, said, "This explicit new guidance is to be welcomed. But health professionals will still have to grapple with the meanings of ‘benefit,’ ‘harm,’ and ‘duty’ in genetics. We must also not forget how this unexpected genetic information may affect relatives.

"Unfortunately the guidance does not cover the major cause of non-disclosure: when a patient intends to disclose genetic information but never quite gets around to it."

Angus Clarke, clinical professor of medical genetics at Cardiff University’s school of medicine, described the guidance as "interestingly minimalist, which is probably for the best."

He added, "It does not recommend a narrowly utilitarian ‘calculus of harms’ to work out the best course of action for the professional. Rather, it simply describes the tension felt by professionals between two conflicting duties without prescribing how to resolve any particular set of circumstances. That seems appropriate."

He was "perhaps surprised" that there was no recommendation that doctors should encourage or persuade patients to share important information with their relatives, but said that codifying "microdetailed protocols" would be unhelpful.

Anneke Lucassen, professor of clinical genetics at Southampton University, said, "I think specific mention of genetic information in new guidelines is useful, since clinicians are increasingly faced with issues of how and when to communicate genetic information to families.

"However, what constitutes a risk of serious harm to the relative will need careful case by case analysis. It is not clear whether a serious harm argument would apply only if there was a treatment or intervention to offer the relative or whether simply not being made aware of a risk of a genetic condition would also constitute a serious harm."

Cite this as: BMJ 2009;339:b4031

CiteULike    Complore    Connotea    Del.icio.us    Digg    Reddit    StumbleUpon    Technorati    What's this?

Rapid Responses:

Read all Rapid Responses

Legal confidentiality obligations may limit disclosure of genetic information

Naomi L Hawkins, et al.
bmj.com, 26 Oct 2009 [Full text]