Genetics advances prompt update on consent and disclosure

5 September 2011

In the light of rapid developments in the clinical applications of genetics, updated guidelines on the ethical and legal issues facing healthcare professionals in this complex area have been published.
The nature of genetic information means that test results often have potential implications for family members as well as patients, leaving many clinicians uncertain about how best to balance the interests of all. A new report, Consent and confidentiality in clinical genetic practice: Guidance on genetic testing and sharing genetic information explores the intricate legal environment created by the Data Protection Act (1998), the Human Tissue Act (2004) and recent developments in statutory and professional guidance. It offers clear and practical guidance, supported by over 20 case studies, on the process of consent, including a special focus on disclosure to relatives.
The report is published jointly by the Royal College of Physicians (RCP), the Royal College of Pathologists (RCPath) and the British Society for Human Genetics (BSHG). The PHG Foundation’s Alison Hall was a leading contributor.

Comment: Technical advances in DNA sequencing are driving a huge expansion in the potential uses of genetic testing and genomic analysis. This RCP report highlights and addresses the impact on one specific area of clinical genetics practice, providing timely advice for practitioners. Many more such updates will be required for other health professionals, as well as for wider health systems. A PHG Foundation report to be released next month examines the knock-on effects of genetic advances across a whole range of clinical fields, and recommendations for the UK health service in particular.