Joint Committee guidance on consent and confidentiality in genetic practice 28/06/06. By the Public Health Genetics Unit The Joint Committee on Medical Genetics has published a report, Consent and confidentiality in genetic practice: guidance on genetic testing and sharing genetic information.

The Joint Committee on Medical Genetics, whose parent bodies are the Royal College of Physicians, the British Society of Human Genetics and the Royal College of Pathologists, has said the report "…is a response to requests from genetics professionals for clarification of issues of consent and confidentiality in clinical practice, particularly with regard to the requirements of the Data Protection Act 1998 and the Human Tissue Act 2004."

The draft report was made available for consultation in 2003, but its publication was delayed until 2006 in order to take into account issues arising from the Human Tissue Act 2004 and the Human Tissue (Scotland) Bill.

The report provides information, advice and guidance on the general aspects of consent in medical genetic practice; the giving and sharing of genetic information; genetic investigations on stored samples or archival pathological material; consent and DNA analysis under the Human Tissue Act 2004; and the Data Protection Act 1998 and the processing of medical genetic information. It also contains detailed flowcharts summarising the recommendations for clinical practice. Specifically, the flowcharts cover requesting information and samples during a genetic consultation; sharing and disclosing genetic information; and consent for genetic analysis of stored samples or archival pathological material.

The Joint Committee recognises that the report will not answer all questions. However, in his cover letter to the report, Dr John Crolla, Chairman of the Joint Committee, notes that they hope "…it will provide a framework which in time will lead to a consistency of approach in this difficult area for all of the UK's clinical and laboratory genetics services and in those other areas of medicine and pathology for which genetic technology and information is becoming an increasingly important feature of clinical practice."

As the contents of the report are time-sensitive, with the implementation of the Human Tissue Act 2004 scheduled for September 2006 and the Human Tissue (Scotland) Act 2006 [PDF 216KB] receiving Royal Assent, the aim is to revisit and revise the guidance after two years.

Links

Joint Committee on Medical Genetics

Consent and confidentiality in genetic practice: Guidance on genetic testing and sharing genetic information