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Best practice guidelines encourage genetic information sharing

12 September 2011

By Julianna Photopoulos

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.


Royal College of Physicians, Royal College of Pathologists and British Society for Human Genetics | 05 September 2011
Staff Nurse | 05 September 2011
PHG Foundation | 05 September 2011
Royal College of Physicians | 05 September 2011


12 August 2013 - by Dr Linda Briceño Moraia, Dr Jane Kaye and Heather Griffin 
European data protection and privacy law is in a state of flux as its governing legislation is in a process of being amended to create a unified regime for data protection across Europe....
26 September 2011 - by Professor Anneke Lucassen and Alison Hall 
Suppose you have just had a genetic test for a condition that you suspect runs in your family. Aside from the possible implications for your own health, could – or should – your results be used to help to interpret tests done on other members of your family?...

22 August 2011 - by Nishat Hyder 
The NHS may be at risk of being sued over patent infringement, says a new report published by the Human Genetics Commission (HGC), the UK Government's genetics advisory body...
21 March 2011 - by Dr Sarah Spain 
This week saw the culmination of an international effort to devise guidelines to strengthen and standardise the reporting of genetic risk prediction studies...
31 January 2011 - by Chris Chatterton 
An audit of 122 NHS sites across the UK by the Royal College of Physicians (RCP) has found that screening for familial hypercholesterolaemia (FH) is very patchy. The report suggests that around 120,000 people have the condition in the UK, but that 85 percent are unaware they have it, which equates to about 100,000 people....
22 November 2010 - by MacKenna Roberts 
The Equal Employment Opportunity Commission (EEOC), responsible for enforcing federal anti-discrimination laws in the US, has issued its 'final rule' guidelines clarifying how federal laws should operate to prevent job discrimination on the basis of genetic information....

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