Consent and confidentiality in genomic medicine

Guidance on the use of genetic and genomic information in the clinic.

This working party report covers new and emerging aspects that must be considered when using genetic and genomic information in the clinic. Genetic or genomic tests are increasingly used in everyday medical practice, and health professionals from all areas of medicine need to know and understand how consent and confidentiality issues may arise.

Members of the Joint Committee on Genomics in Medicine: the guidance authors Prof Anneke Lucassen (centre) and Alison Hall (far right), with Dr Helen Firth (second from right), Dr Rachael Liebmann (second from left) and Prof Andrew Goddard, RCP president.

This revised guidance is the third working party report by the Joint Committee on Genomics in Medicine on the subject of consent and confidentiality in genomic medicine. It discusses multiple aspects which must be considered by all healthcare professionals when using genetic and genomic information in the clinic, including:

  • consent
  • disclosure of information
  • duty of confidentiality
  • data protection considerations. 

Case examples throughout the report showcase how issues around consent and confidentiality in genomic medicine have arisen for practitioners, and provide key advice for healthcare professionals should similar situations arise.