HEAL UoS

Consent and confidentiality in genetics

In 2011, Genetics, News on September 8, 2011 at 8:05 pm

The Joint Committee on Clinical Genetics has recently published an updated document Consent and confidentiality in clinical genetic practice: Guidance on genetic testing and sharing genetic information (http://www.rcplondon.ac.uk/sites/default/files/consent_and_confidentiality_2011.pdf)

The document was substantially rewritten from the previous edition of 2006 by HEAL member Professor Anneke Lucassen and Alison Hall from the PHG Foundation (see http://www.phgfoundation.org/)

It was a privilege to contribute a foreword to the document, which provides guidance on acceptable practice, illustrates it with case studies and contains some useful flow charts to assist clinicians in making decisions.

Reliable information is the keystone to good practice in all healthcare but the distinguishing feature in clinical genetics is that much of this information affects not only the individual patient but also other family members. The normal principles of confidentiality and data protection are not so straightforward in this context. Clinical genetics services will often want to use the information they gather when providing advice to one person to assist another family member but may be unsure whether this is acceptable.

Where a patient agrees to confidential information about them being used in this way, there is little cause for concern. It may even be appropriate to encourage those who are hesitant to permit this to be altruistic in the expression of their ‘genetic solidarity’ with their relatives. Consideration also needs to be given to whether there are circumstances in which it may be legitimate to use such information even without consent. This will not necessarily mean disclosing it to anyone as it may be helpful merely to use it when assessing the risks of genetic disease to another family member.

Article 8 of the European Convention on Human Rights recognises that people’s right to privacy may be outweighed by the rights and freedoms of others, provided always that it is proportional to do so. This is a difficult balancing act and the new guidance aims to help professionals strike the appropriate balance.

It is an important document that deserves to be well read.

Jonathan Montgomery is Chair of the Human Genetics Commission but this post represents a personal view, not the position of the Commission and is based on his Foreword to the newly published document.

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