Welcome to the June edition of e-update.
This edition concentrates on mitochondrial donation as we are currently in the process of formulating a regulatory framework for it. An important part of this is collecting expert views. If you have expertise in mitochondrial genetics, either through your professional life, involvement in stakeholder groups or experience as a patient, we would like to hear from you.
You will find details below of how to contribute your views, please take the time to do so as they will play an important part in shaping our regulatory framework.
Peter Thompson, Chief Executive, HFEA.
Regulating mitochondrial donation: seeking expert views
On 1 June we will be launching our online survey to seek your expert views on our plans to regulate mitochondrial donation.
As many of you will know, this year Parliament voted to approve the use of mitochondrial donation techniques, for the avoidance of serious mitochondrial disease, in UK clinics. This followed government’s consideration of our work, carried out over the last four years, into the public attitudes and safety and efficacy considerations.
We want to develop the best regulatory system possible, one that is clear, efficient and effective. We will incorporate the Regulations into our licensing framework and develop guidance for regulating mitochondrial donation. We want to develop a robust process for ensuring these techniques are used appropriately.
The regulations take effect on 29 October, so we’ve already started the process, and throughout this month we’re seeking your feedback on some of the operational aspects of the system, including:
- what the patient case-by-case application process will look like
- what mechanisms should be in place for follow-up, and
- policy issues, such as donor screening requirements and staff competency.
The online survey will go live on our website on Monday 1 June. We would be grateful if you could take the time to complete and return it by 1 July 2015.
We will also be holding a one-day workshop in central London where we will be seeking expert views on a number of these issues. The workshop, which will be taking place on 23 June 2015, is primarily aimed at HFEA licensed clinics, relevant patient groups/charities, mitochondrial disease centres, and those with expertise relevant to mitochondrial genetics and inheritance. Registration will open at 10.30am for an 11am start ending at 4pm.
To register for the workshop on 23 June 2015 please email firstname.lastname@example.org with your name, role, clinic (if applicable) and contact details before 10am on 17 June 2015.
Further background information on mitochondrial donation can be found on the HFEA website.
Code of Practice
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Page last updated: 29 May 2015