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30 July 2010

Dear Colleague,

Disclosure of Donor Codes

In March 2009, I issued Chair’s letter CH (09)02. The purpose of that letter was to inform centres that the Authority had made an interim decision to stop the disclosure of donor codes, and to advise centres to do the same. The Authority agreed that it would review this decision.

As part of this review, the Authority has obtained advice on whether or not it has the power to disclose donor codes under the Human Fertilisation and Embryology Act 1990 (as amended) (“the Act”).

The Authority has been advised that the disclosure of donor codes is not permitted under the Act and, as such, the Authority has no power to disclose them.

Section 31 of the Act requires the Authority to keep a register containing information about persons who receive fertility treatment; persons whose gametes or embryos are used in fertility treatment; and donor conceived persons (“register information”). 
Section 33A of the Act places a very strict duty on the Authority, and on all centres licensed by the Authority, to ensure that register information is not disclosed except in the specific circumstances set out in sections 31ZA-31ZE, and 33A of the Act.

The Authority has been advised that donor codes do fall within the category of register information set out in Section 31 of the Act. This is because donor codes have the potential to identify individual donors, and the sole purpose of disclosing donor codes to parents of donor conceived children would be to identify donor conceived siblings. As such, the release of donor codes would not fall within any of the relevant exceptions which permit disclosure of register information. 

The Authority has therefore determined that it will stop the disclosure of donor codes on a permanent basis, and strongly advises all centres licensed by it to take immediate steps to ensure that they have systems in place to prevent the unlawful disclosure of donor codes either directly on request, or indirectly. This would include measures such as the redacting of patient records where required, and making any necessary modifications to witnessing arrangements. 

The Authority will continue to provide anonymous donor information (such as goodwill messages and anonymised information provided by the donors themselves) to the parents of donor conceived people, upon request.  We advise centres to disclose anonymous information to parents of donor conceived people, recipients, and potential recipients, of donor conceived gametes, as outlined in guidance note 20 of the Authority’s Code of Practice (8th Edition).

We will continue to disclose anonymous donor information to recipients of donor gametes, and to parents of the donor conceived. The relevant distinguishing factor is that the sole purpose of disclosing donor codes would be to identify donor conceived persons or donors themselves. The same cannot be said of the goodwill messages and anonymised information provided by the donor.  Whilst it is sometimes possible to compare anonymous donor information with other parents and extrapolate possible sibling matches; the disclosure of anonymous donor information is of much wider value and importance to the parents of donor-conceived children and to the children themselves.   

This Chair’s letter, therefore, revokes the guidance issued in Chair’s letter CH (09)02, and prohibits the disclosure of donor codes on a permanent basis.

Yours sincerely,

Professor Lisa Jardine CBE
Chair

Page last updated: 17 August 2012

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