New advances pushing ethical bounds of clinical genetics

  • Date: 15 September 2011

Both ethical and medico-legal boundaries are being increasingly tested as genetic technologies lead to more and more clinical applications being employed within the NHS, according to a new report.

Consent and confidentiality in clinical genetic practice: Guidance on genetic testing and sharing genetic information, published by the Royal College of Physicians (RCP), Royal College of Pathologists and British Society for Human Genetics, explores these issues and sets out guidelines for healthcare professionals.

The report addresses the complex mix of legislation that applies to the use of genetic data and samples and includes worked examples based on real cases illustrating how complex situations can be dealt with in practice. A key focus of the report is to demonstrate how the family can be important in what otherwise might seem to be individual decisions.

Among key recommendations is that family history and clinical information should be shared if relevant to the healthcare needs of family members. For some genetic diagnoses medical interventions can modify the condition and in such cases, attempts should be made to ensure at-risk relatives are aware of their risk. Communication might be through the patient, the general practitioner or other genetic services.

The report also provides guidance on key topics that should be discussed as part of the consent process for genetic testing.

Anneke Lucassen, Professor of clinical genetics at University of Southampton said: "As genetic practice expands and is no longer the sole preserve of regional genetics services, the issues around consent and confidentiality are becoming directly relevant to mainstream medical specialities, including general practice.

"Most patients attend genetic services at least in part to help their family members, but concern about consent and confidentiality means that many health care professionals are uncertain what they can or cannot disclose to family members. The guidelines make this more explicit and provide useful flow-charts and consent forms to record the wishes of the patient."

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