• 5th July 2019

‘Whose test result is it anyway?’ New guidance for doctors on ethics in genomic medicine

New guidance from the British Society for Genetic Medicine, Royal College of Physicians, and Royal College of Pathologists will help healthcare professionals through the complex ethical issues that arise in genomic medicine. The guidance was prepared by the Joint Committee on Genomics in Medicine, which includes representatives from all three organisations, written by Anneke Lucassen, Chair of BSGM, and Alison Hall, Chair of the Ethics and Policy committee of the BSGM.

Consent and confidentiality in genomic medicine 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 relatives information that may reduce their likelihood of disease or death, or is struggling to do so

• How familial information might be communicated without revealing clinical information about the person in whom that information was first ascertained

• When a child’s test results have implications for their later life

• When test results reveals 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.

• How new data protection laws and frameworks e.g. 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.

In addition, the guidance also suggests a uniform way of recording key features of a clinical consent discussion.

The guidance aims to dispel common misconceptions about consent and confidentiality. As Professor Sir Jonathan Montgomery says in his Foreword:

‘The assumption that confidentiality towards individuals is always paramount is as inappropriate as the assumption that disclosure is always permissible, and any decision will need to be tailored to the individual circumstances of the case.’

The report also covers the use of genomic data for research, commercial and insurance purposes, and issues relating to keeping in touch with patients and relatives during their lifetime.

If in doubt about the right course of action, clinicians are advised to consult a relevant multidisciplinary team, experienced colleagues, their hospital’s clinical ethics committee and the national GenEthics Forum as all can provide advice and support in thinking through ethically challenging cases. Consent and confidentiality in genomic medicine will be available free to download from the RCP website from Friday 5 July 2019 here: www.rcplondon.ac.uk/consent-confidentiality-genomic-medicine.