Clause 25
Human Fertilisation and Embryology Bill [Lords]
10:45 am
Mark Simmonds (Shadow Minister, Health; Boston and Skegness, Conservative)
Clause 25 relates to the sharing of information—between and with whom—the restrictions on disclosure, and the exceptions to those restrictions. I shall speak specifically to amendment No. 38.
In proposed new section 33C to the 1990 Act, the Bill provides for consultation and regulations to be made to allow the disclosure of identifying information without consent for the purposes of medical or other research that is
“necessary or expedient in the public interest or in the interests of improving patient care”.
However, as the Minister and many members of the Committee will be aware, this was debated at some length in the House of Lords. Members of the Lords believed that the confidentiality provisions of the Bill were too tight, thus preventing sufficient research on children born by IVF. In situations in which women conceive through IVF, there is no procedure for the woman’s obstetrician to be told about the method of conception. Clearly, this must be looked at in the context of patient confidentiality. Obviously, if a woman does not want that information to be passed on, her privacy should be protected.
However, there are cases in which sharing such information would be beneficial, and there seems to be a presumption against that information flow, although perhaps the presumption should be in favour of it, even though I do not think that it is relevant that obstetricians need to know who the donor was, or whether it was the partner’s sperm or a donor sperm that fertilised the egg. Clearly, with IVF, women undergo treatment and complex procedures that change the body. Such a thing would, in some circumstances, enhance patient care in the context of strict confidentiality, which does not apply to other sensitive or personal conditions, such as considerations of mental health. The amendment would allow for the sharing of information between medical practitioners, which could improve patient care, in the context of confidentiality. The woman’s privacy would be respected, and consent for that information to be passed on could be withdrawn, if she wished.
Amendment No. 37 would remove the regulation-making power in proposed new section 33B of the 1990 Act. My understanding is that the power enables future additional exceptions to be made on who can request information, who must be informed, and with whom it can be shared. However, if consent is the cornerstone of the Bill, such issues should be debated and put on the face of primary legislation. Members of the Committee will see a very comprehensive list of exemptions on the main thrust of the clause in paragraphs (a) to (u) of proposed new section 33A(2). The matter has obviously been thought through very carefully, but will Minister put on record why she feels that it might be necessary to amend the list, given that it has clearly been thought through in great detail? Can she give the Committee an example of an amendment that might occur in future, although I understand that it might be difficult to find an additional category that is not covered in paragraphs (a) to (u)?
My final point about the clause concerns proposed new section 33A(3)(a), which details the interrelationship between the Bill and the Congenital Disabilities (Civil Liability) Act 1976? Will the Minister explain how the measures work together?
It would be helpful if the Minister could clarify whether the Government amendments are all tidying-up provisions, or whether they would actually change the meaning of the clause. They seem to remove certain provisions, but that could just be tidying-up drafting.