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Best practice guidelines encourage genetic information sharing

12 September 2011
Appeared in BioNews 624

A new report published by the Royal College of Physicians, Royal College of Pathologists, and British Society for Human Genetics has encouraged the sharing of genetic information between family members and healthcare professionals as part of good clinical practice.

'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', said Alison Hall from the PHG Foundation who contributed to the report.

Among the recommendations, the report says family history and clinical information should be shared with other health professionals if it is relevant to the healthcare needs of family members. It explains that as the information is passed between healthcare professionals, who share in their duty of confidence, such sharing is unlikely to be prohibited under the UK's data protection laws.

The report also recommends where family members are identified as being at risk of developing a genetic condition, then this information should be communicated by the consultant or their GP. As results from genetic tests often have potential implications for family members, as well as patients, communicating this information may help improve the care of relatives, says the report.

Although the report highlights the potential benefits of genetic testing, it warns of 'the possibility of uncertain or unexpected findings from genetic testing'. It sets out a list of key topics that should be discussed when obtaining consent for genetic testing, including indicating to the patient the potential benefits of genetic investigation in a family member or close relatives.

'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', said Professor Anneke Lucassen, a clinical geneticist at the University of Southampton, involved in producing the report.

'The guidelines make this more explicit and provide useful flow-charts and consent forms to record the wishes of the patient', she added.

If the patient authorises the use of their confidential information and the family history is known, relatives can be made aware of any genetic risks they could face and effective treatment could be provided. 'It may be appropriate to take steps to encourage patients to give such consent even if they are initially hesitant', the report says.


Consent and confidentiality in clinical genetic practice: Guidance on genetic testing and sharing genetic information (PDF)
Royal College of Physicians, Royal College of Pathologists and British Society for Human Genetics |  5 September 2011
Genetic Guidelines Seek Information Sharing
Staff Nurse |  5 September 2011
Genetics advances prompt update on consent and disclosure
PHG Foundation |  5 September 2011
New advances prompt genetics guidance update
Royal College of Physicians |  5 September 2011
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