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21 July 1992

To all Directors of Centres:

Dear Director

CONFIDENTIALITY OF PATIENT INFORMATION

I wrote to you on 18 November 1991 about the problems created by section 33(5) of the Human Fertilisation and Embryology Act 1990 which severely restricted disclosure of identifying information about patients and their treatment. I mentioned in that letter that I had written to the Minister for Health seeking her help in amending the Act in order to resolve in particular two problems for which we could find no solutions: disclosure of identifying information in an emergency when the health of the patient was at risk, and disclosure of information to lawyers so that clinicians might defend themselves in, or instigate legal proceedings.

I am happy to tell you that the Act has now been amended. The Human Fertilisation and Embryology (Disclosure of Information) Act 1992 passed into law on 16 July 1992. This will resolve the main difficulties about confidentiality of identifying information which were brought to our attention over the past year.

The new Act is framed in rather complex terms and we shall be issuing revised Code of Practice guidelines as soon as we can to explain in detail the effects on centres. The revised guidelines should be ready for consultation in the autumn. Meanwhile I thought you might find it helpful to know in general terms the changes in the law. Annex A to this letter therefore contains the main points of the new Act.

Yours faithfully

COLIN CAMPBELL
 
Annex A

THE HUMAN FERTILISATION AND EMBRYOLOGY (DISCLOSURE OF INFORMATION) ACT 1992

Following the implementation of this new Act, identifying information about the provision of treatment for a person (the patient) may be disclosed under the following circumstances:

a) With the patient's consent:

i) to someone specified by the patient;

ii) to unspecified persons who need to know in connection with providing medical, surgical or obstetric services for that patient, or for medical or financial audits.

Before consent is requested reasonable steps must be taken to explain to the patient the implications of the disclosure so that she can make an informed judgement.

b) Without the patient's consent:

i) in an emergency where disclosure is necessary to avert an imminent danger to the health of the patient and it is not reasonably practicable to obtain that patient's consent. It follows that if consent could be obtained but is refused then the information must not be disclosed;

ii) if it is necessary for any purpose preliminary to, or in connection with, legal proceedings or formal complaints procedures;

ii) for the purpose of establishing the genetic parentage of a child who is subject to an application for a parental order in a surrogacy case.

iv) in accordance with section 3 of the Access to Health Records Act 1990.

c) If disclosing the identity of any resulting child cannot be avoided as a result of disclosing the patient's name with consent or in an emergency, this is not against the law.

 The HFEA Code of Practice will be revised to explain the new legislation more fully and give more detailed guidance. Consent will be required to be given in writing and a model consent form will be included in the revision.

Page last updated: 15 August 2012

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