CH(04)07

Dear Colleague

Disclosure of information relating to gamete donation

Following the passing of the Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations 2004 (S.I. 2004 No. 1511) and a number of recent enquiries from clinics, the HFEA has given detailed consideration to the information that may be disclosed about donors and donor-assisted conception treatments.

The Authority recognises that, particularly after April 1, 2005 when all new donors must be identifiable to donor-conceived people when they reach the age of 18, there is likely to be an increased demand for information both from donors and from parents of donor-conceived people.  Providing information may benefit those concerned, for example by allowing parents to make informed decisions about the controlled disclosure of information to their children and by allowing donors to prepare themselves and their families for possible contact with a donor-conceived person and their family.

The law relating to disclosure of information under the HFE Act 1990 remains open to interpretation.  However the Authority's view is that the following important disclosures are permissible as long as the disclosure could not lead to the identification of a person whose identity should be protected:

Disclosure of information to gamete and embryo donors

  • licensed centres may inform donors of gametes and embryos whether a live birth has resulted from their donation and, if so, the number of such births that have resulted and the number of children born ? HFE Act 1990, s.33(6)(d)
  • the HFEA may inform donors of gametes and embryos that an application has been made to the Authority by a person conceived as a result of their donation for information about the donor.  The Authority will endeavour to do so when an application has been made for identifying information about the donor but will not give the donor any other information about the person making the application ? HFE Act 1990, s.33(3)(c).

Disclosure of information to recipients of donated gametes and embryos

  • licensed centres may give those who receive donor-assisted conception treatment, and those who have received such treatment in the past, non-identifying information about the donor or donors used in that treatment ? HFE Act 1990, s.33(6)(d).
  • licensed centres may give those who receive donor-assisted conception treatment, and those who have received such treatment in the past, information about any non-identifying codes or designations assigned by the clinic to the donor or donors used ? HFE Act 1990, s.33(6)(d).

The HFEA may also disclose any information that clinics may disclose in the circumstances mentioned above where that information is contained on the Authority's Register  ? HFE Act 1990, s.33(3)(c).

Clinics should therefore reassure donors and potential donors that they may enquire at any time how many offspring have resulted from their donation.  Identifiable donors should also be reassured that attempts will be made to contact them before their identity is disclosed to a donor-conceived person and they should be encouraged to provide up-to-date correspondence details to facilitate this.    Clinics should also respond as fully as possible to patients' requests for non-identifying information about the donor or donors used in their treatment.

If clinics are unclear about their legal liability under the HFE Act 1990 for any disclosures of information or are unsure about the potential of information to lead to the identification of individuals in any particular case they should seek their own legal advice.

If you have any questions or require any further information please contact Peter Mills, HFEA Policy Development and Co-ordination Manager, on 020 7291 8234 or email peter.mills@hfea.gov.uk

Yours sincerely,

Suzi Leather

Chair, HFEA

Page last updated: 17 August 2012