Select Committee on Science and Technology Fifth Report


1  Introduction

1. Louise Brown, born in 1978 in Oldham and District General Hospital, was the first child born in the world as a result of the use of in vitro fertilisation (IVF) techniques. Her birth dramatically expanded the options available to couples unable to conceive naturally and, as a result, a number of centres in the UK started to offer this treatment. The attractiveness of IVF treatments to patients can be observed by the fact that in 1990 a total of 64 licensed centres treated almost 10,000 patients, resulting in the birth of 1,443 children. However, by 2000 the number of centres had increased to 105 with almost 30,000 patients treated and over 8,000 births. Around 1% of births in the UK (8,000 babies) were conceived using IVF and in many European countries the figure is higher.

2. IVF and embryo research are regulated by the Human Fertilisation and Embryology Authority (HFEA), formed as a result of the Human Fertilisation and Embryology Act 1990. While IVF has become commonplace, the pace of medical and scientific advice has been rapid and the public interest and concern has ensured that the HFEA has never been far from controversy. In 24 April 2002, Dame Ruth Deech, outgoing Chair of the Human Fertilisation and Embryology Authority, her successor Ms Suzi Leather, and the Chair of the Human Genetics Commission, Baroness Kennedy of the Shaws, gave evidence to us on some of the issues that faced their organisations. We asked Dame Ruth what areas of the 1990 Human Fertilisation and Embryology Act (HFE Act) needed to be reviewed.[1] She responded that "There is nothing that I would like to see changed or tightened. The procedure for appeals needs looking at from a human rights point of view. I would relax the confidentiality provisions but the structure remains pretty good.".[2] In our view this represented a complacent response to developments in fast-moving field, especially at a time when the HFEA had been at the centre of several legal challenges to its jurisdiction. We concluded that it was necessary to "reconnect the Act with modern science".[3] The Department of Health's limp response was that the Government was keeping the Act "under review".[4] We considered this statement to be inadequate, and on 24 October 2003, we announced our decision to embark on a review of our own.[5] On 30 March 2004, we announced the inquiry's terms of reference (see Table 1). The Department of Health announced a review of the HFE Act on 21 January 2004 and is looking to this Inquiry to inform the review.[6]

Table 1: Inquiry into Human Reproduction and the Law: Terms of Reference.

3. In view of the keen public interest in the many scientific and ethical issues raised by the inquiry, we undertook, as a first step, a public online consultation. The aim of this consultation was to listen to and gauge the public's views, both to help us frame the inquiry's terms of reference and to allow new voices to contribute to the debate. We believe that this approach represented a significant innovation in the use of "e-consultations" in the UK.

4. The Human Fertilisation and Embryology Act 1990 contains a revision to the Abortion Act 1967. A key issue for us was to decide how to tackle the abortion issue. In view of the complex arguments to be heard in relation to assisted conception and embryo research in what was likely to be our longest inquiry of the Parliament, we decided to limit our deliberations to these issues. A further section of the HFE Act deals with surrogacy arrangements and we make recommendations as to how this topic should be addressed.

5. This inquiry comprised 12 evidence sessions and two UK visits (to visit the assisted conception unit at Guy's and St Thomas' Hospital and the Assisted Reproduction and Gynaecology Centre in London and to discuss stem cell research at the Medical Research Council's National Institute for Medical Research). A further visit was made to Stockholm and Rome, to learn more of the contrasting approaches taken by Sweden and Italy, and also the Vatican. We also took part in a number of meetings. On 29 April 2004, we met with members of the British Medical Association's Medical Ethics Committee, chaired by Dr Michael Wilks. Also contributing was Baroness Warnock. The Warnock Report is the basis for UK regulation of assisted conception and embryo research and is thus the key reference point for our inquiry. Her participation in our discussions was much valued. On 15 July 2004, a seminar was held in Westminster Hall organised by Progress Educational Trust and Epalan, a consultancy offering services to those working with genetic and reproductive technologies, in association with our Committee. This proved to be a useful opportunity to discuss the issues with a wide range of interested parties and for them to hear about our inquiry. Our online consultation also proved to be a valuable source of views (see Box 1).

Box 1: Online consultation

Our online consultation on Human Reproductive Technologies and the Law ran from 22 January 2004 for eight weeks at www.tellparliament.net. The aim of the forum was to get the views of a much wider group on the issues involved and to help us shape the terms of reference for the inquiry.

The site was designed with a view to encouraging people from all walks of life to take part in the online forum. It provided a glossary and background information about the inquiry with a list of useful resources as well as the main headings with the scenarios in the online forum. Tellparliament.net was publicised through direct mailings, local media coverage, viral emails, web links and word of mouth.

The online discussion was structured around four main headings:

·  Screening and Therapy

·  Surrogacy and Donation

·  Consent and Confidentiality

·  New Fertility Treatments

To initiate the debate, the Committee Secretariat provided several scenarios under each of the headings.

A section devoted to Human Cloning was added in the third week of the forum following the news story of research in human cloning in Korea. There was also a section for General Comments for participants to raise any additional points and to comment about the site itself.

333 people registered to take part in the online forum at tellparliament.net. 111 individual users logged on to the site and posted a total of 554 messages. Out of those who registered 181 were members of various organisations, including academic institutions and 152 were private individuals. Out of those who actually posted messages on the site 54 were members of organisations, while 52 were members of the public. There was an even split between male and female participants.

6. This has been a long inquiry and we are indebted to our advisers: Dr Gillian Lockwood, Medical Director of Midland Fertility Services; Professor Sheila McLean, Director of the Institute of Law and Ethics in Medicine at Glasgow University; and Professor Derek Morgan, Professor of Health Care Law and Jurisprudence at Cardiff Law School. They have been invaluable in negotiating the many complex technical, legal and ethical issues this inquiry has raised.

7. This report will begin by providing some background to the regulatory framework in the UK (Chapter 2). After that we will discuss the status of the embryo (Chapter 3). Our conclusions on this vital issue will then inform our discussions of the problems with the HFE Act and its implementation by the HFEA (Chapters 4 and 5). Since the HFE Act was passed there have been enormous changes in the provision of assisted reproduction services and the implications for regulation will be discussed in Chapters 6 and 7. We will then discuss some possible approaches to regulation (Chapter 8) and then conclude with our blueprint for a legislative and regulatory system fit for purpose in the 21st century (Chapter 9).


1   Hereafter, we will refer to the Human Fertilisation and Embryology Act 1990 (c. 37) as the "HFE Act". Back

2   Fourth Report of the Science and Technology Committee, Session 2001-02, Developments in Human Genetics and Embryology, HC 791, Q 32 Back

3   HC (2001-02) 791, para 20 Back

4  Department of Health,Government Response to the Report from the House of Commons Science and Technology Committee:Developments in Human Genetics and Embryology,November 2002,Cm 5693, para 34 Back

5   Press Release No. 45, Session 2002-2003 Back

6   Q 1301 Back


 
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