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Human Fertilisation and Embryology Bill [HL]

My Lords, the amendments of the noble Lord, Lord Patel, address the important issue of the disclosure by the Human Fertilisation and Embryology Authority, by HFEA licence holders and others, of identifying information about people who receive certain types of licensed infertility treatment, those born as a result of such treatment and those who donate their gametes or embryos for certain types of treatment, or for research. The issue calls for very careful consideration of the value of such information being shared—for instance, with other health professionals involved in patients’ care—balanced against the rights of patients to have their information treated confidentially. This is a complex area and it may be helpful if I outline the aims of the 1990 Act and the Bill in this respect. Essentially, the 1990 Act provides that the HFEA, people who work in licensed centres, and certain others, shall not release identifying information about certain types of patient, donors or those born as a result of certain types of treatment. The Act also provides exceptions to this prohibition so that it does not apply in specified circumstances. This recognises the principle of patient confidentiality while also acknowledging that there are circumstances where it may be appropriate to disclose such information. I also stress that it is not a case of disclosure being able to take place if the prohibitions in the 1990 Act and the Bill were not to apply. The provisions of the Data Protection Act 1998 would remain relevant, as would the common law on confidentiality and other relevant laws. Clause 25 introduces new sections setting out in one place the prohibition on the disclosure of identifying information which the Act imposes and the exceptions to that prohibition. These sections consolidate the exceptions contained in the 1990 Act and add new ones. They also introduce a new regulation-making power subject to the affirmative procedure—new Section 33C—which will enable regulations to be made allowing the disclosure of identifying information without consent for the purposes of medical or other research which is necessary or expedient in the public interest, or in the interests of improving patient care. The regulations are required to be subject to consultation beforehand. The exceptions in the Bill have been extended in recognition of the fact that a wider range of people may now need access to the information held by licensed centres, the HFEA and others; for example, those working under a contract with the HFEA to discharge its statutory functions. The exceptions have also been extended to cover circumstances where the disclosure of information would be justified, such as disclosure of some types of information with the consent of persons to whom the information relates. Amendment No. 132 concerns one of the exceptions to the prohibition on disclosure I have already referred to—subsection (2)(i) of new Section 33A. Currently, only recipients of infertility services can consent to their identifying information being disclosed. Those born as a result of such services and donors may not do so. Further, only clinics can disclose information about recipients on the basis of their consent. The HFEA is currently not able to do so. The new exceptions included in new Section 33A address this. They will enable disclosure of information in certain circumstances, not only about recipients of services but also about those born as a result and about donors. The Government believe that these exceptions will be helpful in enabling researchers to access the data which the HFEA and clinics hold about patients’ treatment. It will also enable information to be disclosed for healthcare purposes or for any other purpose where the relevant consents have been obtained. The purpose of the noble Lord’s amendment appears to be to simplify the circumstances in which the particular exception at subsection (2)(i) of new Section 33A will apply. The exception applies where the people identified in the information consent to its disclosure. It would not, however, enable disclosure of information to a person born as a result of treatment services when they are under age 18 or enable consent to be sought from such a person. The amendment is helpful. The provisions in the Bill are intended to simplify how the disclosure of identifying information with consent will work. I agree that the amendment would provide further simplification. On that basis I am happy to take it away for further consideration. Amendment No. 133 adds a further category to the list of exceptions to the prohibition on disclosure of identifying information contained in the Bill. It would introduce a wide-ranging exception, lifting the prohibition on disclosure without the patient’s consent if, essentially, it is necessary or expedient in the public interest or in the interest of improving patient care. This would introduce a wide range of circumstances in which the prohibition on disclosure would not apply but where the patient’s consent to disclosure has not been obtained. I understand that the noble Lord is seeking to ensure that the prohibition on disclosure is not unreasonable, but I can assure him that we have sought to provide in the Bill a comprehensive list of exceptions to the prohibition on disclosure so that the prohibition will not apply in circumstances where disclosure is justifiable. The NHS code of practice on confidentiality makes clear that confidential patient information should generally be disclosed only for healthcare purposes or purposes associated with healthcare with patient consent. We have therefore extended the categories of person in the Bill who can consent to disclosure of their information. We do not consider it appropriate for disclosure to be possible in the wide range of circumstances set out in the noble Lord’s amendment, where the relevant consents have not been obtained. For instance, it would lift the prohibition on disclosure of information about a patient’s care—for example, for medical diagnosis—where the patient does not consent to it. Further, the Government consider that the breadth of the exception would not provide sufficient certainty for the purpose of implementing the European Union tissue and cells directive. It may be helpful if I mention a couple of additional points. Some believe that disclosure can be made only to a named person and that this is unnecessarily prohibitive. But it is a misconception that disclosure of identifying information to health professionals can be disclosed only to a specific, named individual. That has not been the case since the amendments made to the 1990 Act by the Human Fertilisation and Embryology (Disclosure of Information) Act 1992. We have not included in new subsection (6C) of the 1990 Act a requirement that disclosure must be to a named person. In any event, the current legislation already exempts the need for a named individual where disclosure is in connection with the provision of treatment services for the person giving consent. There are also misconceptions about disclosure and written consent. Neither the 1990 Act nor the Bill requires consent to disclosure of identifying information to be in writing. It has to be said, however, that written consent does provide clarity that consent has been obtained. I listened carefully to points made in the debate, especially by those noble Lords who work in healthcare. The Government’s considered view is that no further concessions are necessary in this area. However, it does seem to be the clear view of noble Lords that enabling further consent would be for the patient’s well-being. Healthcare seems to be the reasoning behind their arguments. Therefore, it is beholden on me to take this amendment back and take another look at it. We will then see whether it might be appropriate to have a similar amendment in the other place and whether this would fit into the broader picture in relation to the Human Tissue Act, human rights legislation and other things. I do not know whether that will be possible, but I am willing to take it back and ask my colleagues in another place to have a look at it.