Skip to main content

Proceeding contribution from Lord Patel (Crossbench) in the House of Lords on Monday, 28 January 2008. It occurred during Debate on bill on Human Fertilisation and Embryology Bill [HL].


Human Fertilisation and Embryology Bill [HL]

moved Amendment No. 132: 132: Clause 25, page 26, line 22, leave out ““of information falling within any of paragraphs (b) to (e) of subsection (2) of section 31 and is”” The noble Lord said: My Lords, I spoke to this amendment, which addresses confidentiality, in Committee. Many clinicians working in the field of in vitro fertilisation have found this measure difficult to work with in practice. Professor Peter Braude from St Thomas’s Hospital has raised it with the Department of Health. He received a letter clarifying some of the issues raised by this amendment. Among other things the letter explains that there is a further exception to the prohibition on disclosure in the Human Fertilisation and Embryology Act, which was added by the Human Fertilisation and Embryology (Disclosure of Information) Act 1992. This Act allows a patient to consent to the disclosure of information for the purposes of their own treatment. The letter also explains that the restrictions in new Section 33A introduced in this Bill apply only to information held by HFEA licence holders in their capacity as such, and that the restrictions in the 1990 Act are designed to comply with the requirements set out in the European Union tissue and cells directive. I confess that I remain unclear as to why the consent of the person to whom the information relates is not sufficient for it to be disclosed for any purposes the person chooses, subject, of course, to the privacy of any third parties, or why the restrictions on medical information pertaining to licensed IVF treatment are so much more onerous than those applicable to other forms of treatment, including infertility treatment that does not need to be licensed. It has always seemed anomalous to clinics as well as to the majority of patients that specific consent to disclose details of their treatment to others has been a requirement. Indeed, explaining the issue to patients is often greeted with surprise given that they have been used, in the preliminary assessments of their infertility and in the provision of first line treatment, to normal lines of communication between those who are involved in their care—for the most part hospital clinicians and general practitioners—being established without their permission being sought. Clinical problems which could be in breach of the law include: gynaecological referrals of patients treated by the licence holder and their clinics; communication with other health professionals; admissions with complications after IVF treatment; antenatal care—which is where I mostly come across these patients—referral for screening; neonatal care and even clinical care in later life. All working in the sector would prefer a system that allowed the routine nature of IVF treatment to be acknowledged and for clinical staff to be able to communicate with colleagues routinely without fear of prosecution. In other areas of sensitive medical practice such as mental illness, HIV and abortion, confidentiality issues do not seem to require the same degree of legislative imposition. In between Committee and Report, I was on a night flight to Cape Town and a lady on the other side of the aisle experienced difficulties with which I helped out. She was 26 weeks pregnant and informed me and the air hostesses that the pregnancy resulted from in vitro fertilisation. She even told me the name of the team looking after her during her pregnancy. The problem was solved very easily but she had no qualms telling everybody on the plane about her infertility problems. So patients do not require this degree of confidentiality. I wonder how we might move this forward. It might be possible for the HFEA to provide guidance in its code of practice for clinicians to follow, particularly on patient safety issues. They would thus avoid breaching confidentiality laws, which carry draconian penalties if they are found guilty of breaking them. I beg to move.


Secondary information

Type
Proceeding contribution
Reference
698 c456-7 
Session
2007-08
Chamber / Committee
House of Lords chamber
Subjects
Disability Disclosure of information Codes of practice Death Abortion Congenital abnormalities Civil partners Fertility Licensing Human embryo experiments Donors Ethics IVF Northern Ireland Parents Registration Registration of births, deaths, marriages and civil partnerships Research Surrogacy Stem cells Human-animal hybrid embryos
Legislation
Human Fertilisation and Embryology Bill (HL) 2007-08
Link
View this Proceeding contribution on www.publications.parliament.uk