HEAL UoS

Posts Tagged ‘Article 8’

This time last month: Tom Condliff & his gastric band request

In 2011, NHS, Testing project on September 12, 2011 at 8:57 am

On 15 August 2011, the BBC reported that Tom Condliff’s renewed request for a ‘gastric band’ had been granted by North Staffs PCT. Mr Condliff had previously requested this surgery, but the PCT in question had turned down his request as his BMI (body mass index) fell below the required threshold set out in the relevant policy – his was reported to be 43, whereas the policy in question required a minimum BMI of 50 before this operation would be routinely provided (among other conditions, including the clinicians indicating it was necessary, and the consent of the patient in question).

Part of the PCT’s policy excluded consideration of social factors, meaning that non-medical/non-clinical matters could not be used in consideration of the ‘exceptionality’ of a given case. The PCT refused his ‘individual funding request’ (IFR), which Mr Condliff had made based on the ‘exceptional’ circumstances of his case; and thereafter he sought judicial review of the PCT’s decision.

His application – based on arguments around the applicability of Article 8 of the Human Rights Act 1998 (right to respect for private and family life), together with section 6 of the same Act (whereby it is unlawful for a public authority to act in a way which is incompatible with a Convention right) – failed in both the High Court on April 7, 2011, and in the Court of Appeal on July 27, 2011. 

He submitted a new IFR in August 2011, and it was reported (by the BBC, above) that he was informed soon after that the request and additional medical evidence brought him within the exceptional category as per the PCT’s policy.

Other links:

Guardian: http://www.guardian.co.uk/society/2011/jul/31/tom-condliff-gastric-band-appeal?INTCMP=SRCH

Telegraph: http://www.telegraph.co.uk/health/healthnews/8703065/NHS-funds-weight-surgery-for-obese-man-despite-court-loss.html

Mills and Reeve (the N Staffs PCT’s solicitors) briefing on CA decision (27/07/11): http://www.mills-reeve.com/files/Publication/34b1ea56-ce83-4b47-a714-b7e2255cecd9/Preview/PublicationAttachment/a56af14a-d151-488f-96d9-bb64ab85d749/R_(Condliff)vNorth_Staffordshire_PCT_26_July%20_2011.pdf

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.