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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