Regulating doctors, ensuring good medical practice

Doctors told to warn patients of their genetic risks

Press Release

28 Sep 2009

Doctors can share confidential genetic information about patients in order to protect their relatives, even if patients object, says new GMC guidance on confidentiality, released today, 28th September.

Confidentiality is central to trust between patients and doctors, but it is still an area of ethics which continues to challenge doctors more than any other.

Dr Henrietta Campbell, who chaired the GMC's working group on confidentiality

For example, when a patient is diagnosed with a disease such as a hereditary form of cancer, doctors could tell their relatives about the potential risk their genetic link could carry.

The guidance also advises doctors to ask patients what personal or medical information they would like to share, with whom they would be like this information shared, and in what circumstances. This is especially important where patients have fluctuating or diminished capacity and may not be able to explain their condition or treatment.

Dr Henrietta Campbell, former CMO in Northern Ireland, who chaired the GMC’s working group on confidentiality, said,

“Confidentiality is central to trust between patients and doctors, but it is still an area of ethics which continues to challenge doctors more than any other.

“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.”

Other areas covered in the guidance also include:

  • Reporting concerns about patients to the DVLA, when, due to ill health, a patient might be unfit to drive
  • Responding to criticism in the press, which may involve inaccurate or misleading details of doctors’ diagnosis, treatment or behaviour
  • Ensuring that school or college students on work experience understand the principles and implications of maintaining patient confidentiality
  • Disclosing information for insurance, employment and benefit claims, including advice for occupational health or sports doctors who face ‘dual obligations’
  • The use of confidential information for research or health service management, when it isn’t always practicable to use anonymised information or to get patients’ consent.

The new guidance – Confidentiality – was produced following a three-month consultation period, in which members of the public, the medical profession, employers and patients were asked for their views on draft guidance.

The guidance can be accessed here:  www.gmc-uk.org/confidentiality

It takes effect on 12 October 2009.