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08 February 2001

To: Persons Responsible

Dear Colleague,

Re: Confidentiality provisions of the Human Fertilisation and Embryology Act 1990 and Disclosure of Identifying Information

A variety of recent communications received by the HFEA have revealed that some licensed centres are still unclear about what information they can disclose and to whom and what consent is required in order to comply with the confidentiality provisions of the Human Fertilisation and Embryology Act 1990 (as amended by the Human Fertilisation and Embryology (Disclosure of Information) Act 1992).

Persons Responsible for licensed centres are reminded that the strict confidentiality provisions of the HFE Act 1990 were deliberately drafted in such as way as to ensure that the confidentiality of any person receiving licensed fertility services in the UK would be fully protected.

The passing of any identifying information from licensed centres to any person or organisation for whatever purpose without the specific consent of the patients concerned would be a breach of the HFE Act 1990 by the licensed centre. As such, the breach would have to be brought before a Licence Committee and the centre would risk losing their licence.

In general, consent to disclosure must be for disclosure to a specific person. Exceptions allowing general consent to disclosure include disclosure to a person who needs to know in connection with the provision of treatment services for the individual giving consent or for an audit of clinical practice or the auditing of accounts.

Providing consent is obtained from individual patients for their details to be released to a specified named person (e.g. the patient's G.P.) or a specific person within an organisation then the information can be legally disclosed to that specific person only.

However, prior to the patient giving any consent to disclosure, they should be informed of the full implications of that consent including the fact that once the information has been released to someone not covered by a licence the strict confidentiality provisions of the HFE Act 1990 no longer apply.

Without specific consent, information about fertility treatments required for accounting purposes outside the licensed centre or for databases designed for the management of health services generally may only be provided in an anonymised form and centres should take care to avoid any inadvertent disclosure of the identity of patients.

It must be emphasised that licensed centres will be putting their licences in jeopardy if they release identifying information about patients to other individuals or organisations without having the necessary consents in place first.

If you have any further queries relating to the contents of this letter please contact Ginny Shires (020 7539 3311) at the HFEA.

Yours faithfully,

Hugh Whittall
Acting Chief Executive

Page last updated: 24 August 2012

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