Donor information access review

Due to recent amendments to the Human Fertilisation and Embryology Act, the HFEA is required to make certain changes to the type of information it provides to those affected by donation (including donor-conceived people, parents and donors). It will mean that people affected by donation will have greater access to information about their genetic origins than is currently available.

The HFEA is using this opportunity to also undertake a more general review of its policy on information access for those affected by donation.

The revised policy and legislation changes will come into effect in October 2009.

What will change under the new legislation?

Under the current HFEA access rights:

• donor-conceived people over 18 years old can find out some descriptive information about their donor
• donors can find out anonymous information about people born through their donation
• parents can find out anonymous information about their children´s
• donor and they can find out if their children have any genetically related siblings conceived as a result of donation.

From October 2009, as a result of the legislation changes:

• donor-conceived people will be able to make contact with genetically related donor-conceived siblings (provided both parties consent)
• donor-conceived over 16 years old will be able to access anonymous information about their donor and find out whether they have any genetically related donor conceived siblings
• the HFEA will have a legal obligation to contact and forewarn donors if a donor-conceived offspring has made a request for identifiable information. 

The full extended access rights are outlined in the downloadable Summary of Access Rights document.

Summary of Access Rights (57Kb)

Who decides on the policy changes?

The HFEA have set up a Policy Working Group to review its policies around information access. The group is made up of Authority members with relevant experience and specialists from the HFEA's Information and Policy teams.

In order to review the HFEA´s current policies, the working group is meeting with key groups from the donor-conception and donation sectors, as well as fertility clinics. It will be considering, among other things, the duty of care the HFEA and clinics owe applicants who have been affected by donation.

The group will meet twice on 10 October and 28 November and will make policy recommendations that will be discussed by the full Authority in January 2009. The final, reviewed policy will come into effect in October 2009.

Where is the donor information stored?

The HFEA is required by law to keep a register that records information about regulated assisted reproductive treatment services in the UK. The HFEA Register contains information on all births resulting from treatment services from 1 August 1991. It also contains information on donors.

For more information, see HFEA Register - an introduction.

Both the HFEA and licensed clinics deal with Register requests from donors and parents of the donor-conceived. The HFEA has an interim policy in place to process requests from the donor-conceived.  The interim policy will be replaced by the long-term policy in October 2009.

Further information

For further information please contact Danielle Hamm, Policy Manager:

Email: Danielle.Hamm@hfea.gov.uk
Phone: 020 7291 8253

Useful Links

Donor Conception Network (D C Network)
National Gamete Donation Trust (NGDT)
UK Donorlink