5 July 2019

Consent and confidentiality in genomic medicine is new guidance published by the College, the Royal College of Physicians and the British Society for Genetic Medicine to help healthcare professionals through the complex ethical issues that arise in genomic medicine.

Professor Jo Martin, President, The Royal College of Pathologists:

“Genomic medicine is radically transforming how we prevent, treat and cure disease. It has the potential to deliver great health benefits for people.

It can also, however, raise ethical dilemmas for patients and health professionals alike.

This new guidance will assist healthcare professionals to support and guide patients through some of the complexities and challenges that genomic testing can bring.”

Prepared by the Joint Committee on Genomics in Medicine, which includes representatives from all three organisations, the guidance is an update of previously published advice. It covers a wide variety of situations that all healthcare professionals dealing with genetic and genomic information will face, as testing becomes more prevalent across the whole of medicine. The new edition includes real-life examples of ethical issues, and stresses how much these cases relate to the family situation of the person being tested or treated. While providing general advice, the guidance is clear that each case should be addressed individually. The guidance gives examples of what to do in situations including:

  • when a person is tested and the test results have implications for other family members
  • when a person does not want, or finds it difficult, to tell other relatives information that may reduce their likelihood of disease or death, or is struggling to do so
  • how familial information might be shared without revealing clinical information about the person whose information is being shared
  • when a child’s test results have implications for their later life
  • when test results reveal unexpected information. This might be about a disease that is completely unrelated to the reason for the test, or about the genetic relationships between people
  • suggests a uniform way of recording key features of a clinical consent discussion
  • how new data protection laws and frameworks eg GDPR affect clinical practice in genomics.
  • how legislation such as the Human Tissue Act affects access to stored samples for genetic testing
  • what to do when the results and implications of genomic information are not clear enough to give definitive medical advice
  •  when to communicate new evidence about past genomic results.