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The amended Human Fertilisation and Embryology Act 1990, together with the Human Fertilisation and Embryology (Disclosure of Information for Research Purposes) Regulations 2010, give the HFEA the power to grant research institutions access to HFEA Register data. The Authority decided to delegate the decision making associated with this process to a group of executive officers, the Register Research Panel, while retaining oversight of this function.

The Register Research Panel has delegated powers to authorise access to Register data, to place conditions upon authorisation, and to suspend or revoke authorisation. The Panel is chaired by the Director of Strategy and Information.

Access to identifying Register data is considered as a method of last resort. A number of tests will need to be met in order for the Panel to authorise access to identifying data about patients, partners and children born as a consequence of treatment. These are set out in the Panel's decision tree. The Panel is responsible for ensuring that proposed research projects cannot be fulfilled by reference to anonymised HFEA Register data.

In addition to liaising with applicants, the Panel will work with experts in the fields of medical and social research. A Memorandum of Understanding is in place with the National Information Governance Board's Ethics and Confidentiality Committee which has a role in considering applications to access HFEA Register data for medical research purposes.

Regular reports on the operation of the Register Research Panel and the progress of authorised research projects will be submitted by the Panel to the Authority in its capacity as the HFEA's Oversight Committee.

• Terms of Reference (30.7 KB)
• Decision Tree (143 KB)
• MoU with NIGB (32.7 KB)

 

Membership of the Register Research Panel

• Peter Thompson, Director of Strategy and Information (Chair)
• David Moysen, Head of IT
• Charlotte Augst, Head of Business Intelligence

 

Minutes of the Register Research Panel

• Meeting minutes - 2 August 2011 (83 Kb)
• Meeting minutes - 3 November 2010 (671 Kb)
• Meeting minutes - 11 October 2010 (566 Kb)
• Meeting minutes - 13 September 2010 (677 Kb)
• Meeting minutes - 16 July 2010 (513 Kb)
• Meeting minutes - 8 June 2010 (664 Kb) 

Recently approved projects

• 'Are children born after assisted reproduction at increased risk of cancer? A population based linkage study' (7Kb)
• 'Do hormonal treatments for assisted reproduction increase risks of cancer or mortality in women? A national cohort study' (7 Kb)

 

Relevant Links

• 2008 Act (s.25)
• 2010 Regulations

 

Page last updated: 22 June 2010

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