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Consider family needs in genetic testing, doctors advised

Caroline White

Monday, 5 September 2011

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Doctors should consider the implications for the family when genetic tests are needed for a patient, say new guidelines. 

More and more clinical applications are being seen in the NHS, says the joint guidance from the Royal College of Physicians, the Royal College of Pathologists and the British Society for Human Genetics, which aims to help doctors navigate the increasingly complex ethical and legal issues surrounding the use of genetic material. 

This is especially important when managing information that is relevant to both the individual and their family, it says.  

The guidance includes flowcharts for guided decision making and simple consent forms, which can be adapted for use in different settings, and worked examples, based on real cases illustrating how complex situations can be dealt with in practice.  

A key focus of the report is to show how the family can be important in what otherwise might seem to be individual decisions.  

Key recommendations include: 

  • Family history and clinical information should be shared if it is relevant to the healthcare needs of family members. Healthcare professionals can share relevant information with each other without breaching their duty of confidentiality. 
  • Patients should be informed in general terms of what happens to their sample and the information from it. This includes explaining that samples may be important in quality control of other tests and that their results may be incorporated into national data sets which are vital for developing evidence-based care.
  • 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 GP, or other genetic service. 

The guidance contains a list of key topics that should be discussed as part of the consent process for genetic testing.  

These include the potential benefits of genetic investigation in a family member for close relatives and how, then, certain aspects of information might be communicated to them as well as how to deal with uncertain or unexpected findings from 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 specialties, including general practice. Many healthcare professionals are uncertain what they can or cannot disclose to family members.  

Alison Hall from the PHG Foundation, a genetics policy thinktank, commented:

“Patients are content to undergo tests and to entrust confidential information to professionals in order to ensure that they get sound advice and treatment. The distinguishing feature in clinical genetics is that much of this information affects not only the individual patient but also other family members. 

In this report we have described how health professionals can balance the interests of their patients and their relatives whilst still taking account of the requirements of the Data Protection Act 1998 and the Human Tissue Act 2004.” 

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

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