Guidance published on ethics in genomic medicine

Author: Jo Carlowe

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New guidance has been published today to help clinicians negotiate complex ethical issues that arise in genomic medicine.

Consent and confidentiality in genomic medicine is an update of previously published advice, and has been produced by the Joint Committee on Genomics in Medicine, with representatives from the Royal College of Physicians, Royal College of Pathologists and British Society for Genetic Medicine.

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
  • 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
  • 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

The guidance aims to dispel common misconceptions about consent and confidentiality.

In the foreword, Professor Sir Jonathan Montgomery, professor of healthcare law at University College London, states: “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.

Commenting, Dr Helen Firth, chair of the Joint Committee on Genomics in Medicine and consultant clinical geneticist at Addenbrooke’s Hospital, Cambridge, said: “With the increasing use of genomic testing in medicine, this 2019 edition of the JCGM Consent & Confidentiality Guidance is very timely. Grounded in thoughtful consideration of ethical and legal principles, the case examples will enable clinicians to readily grasp how to apply this guidance in their clinical practice.”

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