Information access for donor-conceived people donors

Due to the 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 means that people affected by donation will have greater access to information about their genetic origins than is currently available.

The HFEA used this opportunity to 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 on 1 October 2009.

What changed under the new legislation?

Under the HFEA access rights prior to 1 October 2009:

donor-conceived people over 18 years old could find out some descriptive information about their donor
donors could find out anonymous information about people born through their donation
parents could find out anonymous information about their children's
donors could find out if their children had any genetically related siblings conceived as a result of donation.

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

18 year old donor-conceived people are be able to make contact with genetically related donor-conceived siblings (provided both parties consent). The first donor-conceived person will turn 18 in March 2010
donor-conceived over 16 years old are able to access anonymous information about their donor and find out whether they have any genetically related donor conceived siblings
the HFEA 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 decided on the policy changes?

The HFEA set up a Policy Working Group to review its policies around information access. The group was 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 met with key groups from the donor-conception and donation sectors, as well as fertility clinics. It considered, among other things, the duty of care the HFEA and clinics owe applicants who have been affected by donation.

The group met three times between October 2008 and January 2009, It made a series of policy recommendations which were subsequently agreed by the Authority in January 2009.

Opening the Register Policy – a principled approach (Working Group paper)

Summary of main decisions

Policy Changes

The HFEA has agreed that the core principles which will underpin its approach to information access by people affected by gamete and embryo donation are:

Protection of the right of applicants to access information – to be open about the type of information the HFEA holds and to provide people with accurate information in a timely, secure and considerate manner.
Duty of Care – to treat all applicants sensitively and provide good general information about the possible impact information can have on people’s lives. To provide meaningful signposting to appropriate counselling and support services.
Statutory Compliance – to implement the changes brought about by the Human Fertilisation and Embryology (HFE) Act 2008.

In addition to the implementation of the statutory changes brought about by the HFE Act 2008, the Authority has agreed to continue to provide information access rights to parents of donor-conceived people. As is currently the case, parents will be able to access some anonymous information about their children’s donor and any genetically related donor-conceived siblings their children may have, in order to help them inform their children of their origins.

The Authority is also committed to establishing a Voluntary Sibling Contact Register, which will enable donor-conceived individuals to make contact with their genetically related donor-conceived siblings, from the age of 18, on the basis of mutual consent.

The revised OTR policy was implemented in October 2009, alongside the implementation of the new legislation.

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.

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.

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Further information

For further information contact:

Danielle Hamm
Policy Manager:

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