APPENDIX 24
Memorandum from the Genetic Interest Group
1. The Genetic Interest Group (GIG) is a
national alliance representing individuals and families affected
by or at risk of genetic disorders. We have 130 groups and many
individuals in membership. For parents at risk of having a child
with a genetic disorder genetic testing either of embryos prior
to implantation or during pregnancy is an important option. GIG
and its members also broadly support research involving embryos,
whether to improve assisted reproductive techniques, improve understanding
of genetic disorders or gain understanding that may lead to cell-based
therapies. Accordingly, we have taken a keen interest in the issues
over the course of the past 15 years. Indeed, the passage of the
Human Fertilisation and Embryology Bill through its final Parliamentary
stages was a factor leading to the formation of our group.
2. The broad question thrown up by human
reproductive technologies is covered by the first set the inquiry
asks, on: "the balance between legislation, regulation and
reproductive freedom; the role of Parliament in the area of human
reproductive technologies; and the foundation, adequacy and appropriateness
of the ethical framework for legislation on reproductive technologies."
3. This is a useful and important starting
point as it sets the broad framework and underpins policy decisions
on individual issues. The 1990 HFE Act was crafted in such a way
as to allow most of the things scientists and patients wanted
at the time, and to provide a framework to consider, and in principle
permit, foreseeable extensions of existing research and clinical
applications. The recent extension of research purposes, which
made possible research into embryonic stem cell derivation and
therapies, is a good example of the forward-looking character
of the original Act.
4. However, it would be a mistake to see
the facilitative character of the Act as equating with an anything
goes attitude as some of its critics contend. In fact the Act
created criminal sanctions and a licensing regime to cover both
research and treatment. It did this by establishing the illegality
of research and treatment carried out without a license, and by
establishing the categories under which the Human Fertilisation
and Embryology Authority could license activity. The current argument
about the legality of creating so-called saviour siblings is an
illustration of the difficulties this can throw up. Arguably,
tissue typing for the purpose of allowing a stem cell transplant
from a newborn's umbilical cord for the benefit of another child
is an application of PGD of a different character to the purposes
that Parliament considered during passage of the HFE Bill. (This
is the firm view of HFEA Chair Suzi Leather, although it should
be noted that were the House of Lords to follow the reasoning
of the Court of Appeal, the legality of tissue typing whether
or not accompanied by a test for a genetic disorder would be settled
for practical purposes).
5. Were Parliament to undertake an extensive
examination of the whole area and its regulation, it would be
worth considering whether a different regime, one that did not
formally criminalise unspecified activities, would provide a more
suitable and flexible system, one that could more adequately cover
new scientific and clinical practices by allowing them to develop
and be assessed.
6. Questions also need to be asked about
the efficiency of the regulatory regime. There are concerns that
the HFEA currently takes too long to come to decisions and simultaneously
takes too detailed an interest in individual procedures, technical
aspects of procedures, or lab management that can and should be
matters for other bodies or of professional competence. Strong
concerns have also been expressed about the danger of unnecessarily
onerous regulations resulting from the EU human tissue directive.
We would urge Government to take what steps it can to respond
to these concerns.
7. The Committee asks for views on recent
changes in ethical and societal attitudes. Traditionally, anti-abortion
groups and politically sympathetic allies have led the opposition
to IVF, genetic testing of embryos (selection) and embryo research.
In many ways this is still the case, as evidenced by the recent
Parliamentary debates on the extension to the research purposes
in the HFE Act and the legal challenges to that change as well
as the licensing of tissue typing in conjunction with a genetic
test to avoid a genetic disorder.
8. In an important sense, those fundamentally
opposed to these practices have lost the argument. Just as it
can be confidently stated that abortion is broadly accepted as
a legal practice in Britain, so we can say that "conventional"
applications of Pre-implantation Genetic Diagnosis (PGD) are now
widely accepted, even if some or even many people have some unease
about aspects of this. Indeed, there is slow drift towards NHS
funding for a part of IVF and also PGD.
9. However, to set alongside the picture
of continuity and steady if slow expansion of research and treatment
options, we need to consider some changes and new challenges.
In the context of embryo research and clinical applications, the
argument put is that there is a risk of undermining the value
given to the human embryo or, perhaps more pertinently, a threat
of "commodification". Internationally, influential writers
such as Francis Fukuyama[207]
and Jurgen Habermas[208]
have taken up this theme. In the UK feminist academic Hilary Rose
and—opportunistically?—some of the anti-abortion campaigners
are obvious proponents.
10. Roger Brownsword, Professor of Law at
King's College, who is sympathetic to these concerns, labels this
new alignment the "dignitarian alliance".[209]
Unlike previous absolutist arguments based on "Pro-Life"
grounds, the arguments put forward under this heading do not support
outright rejection of embryo selection and research. But they
do suggest that we should move forward with caution or prevent
particular applications.
11. A related but distinct set of issues
can be grouped under the heading of risk. Possible and theoretical
harms to children born following novel applications of human reproductive
technologies—whether physical or psychological—and
the possibility of offending public sensibilities have been highlighted
by a number of UK commentators, but most significantly by the
HFEA Chair Suzi Leather. Leather highlighted the Authority's concerns
in speeches and press interviews relating to both tissue typing
and sex selection for social reasons. For example, of the former
she said: "we don't know what the social and emotional consequences
of being a so-called "saviour sibling" will be. It seems
to me that in this area of considerable uncertainty, where there
is a possibility of theoretical risk, that we should adopt a precautionary
approach."
12. The fraying of the progressive consensus
established in 1990, and Government/regulators' openness to re-examination
at a Parliamentary level suggests that aspects of the new concerns
strike a chord even if the legal objections have been resisted.
Specifically, "commodification" and possible harms to
future children provide a new focus for concern about the welfare
of the child as older ones based on traditional family values
have gradually lost their salience.
13. The specific areas that were central
to our members' interests in 1990 remain so today: PGD and research
involving embryos. In press statements and elsewhere GIG has expressed
support for the use of tissue typing in conjunction with genetic
testing to enable a family to have a child who is both free of
a genetic disorder and also able to be a stem cell donor to a
sick sibling. The HFEA has issued a licence for this. However,
it has refused a licence to carry out tissue typing on embryos
in the absence of a test for a genetic risk. GIG can see differences
between the two cases, but we do not think they are significant.
14. It is too early to say what benefits
may flow from embryonic stem cell research. However, the issuing
of licences to conduct this work and the opening of a Bank (repository)
for cell lines is a sign that, steadily, an infrastructure to
sustain it is being established.15. We do not believe that
current or near-future practice in these areas threatens to undermine
humane values or carries with it any obvious risks that are not
already under consideration. Indeed, if caution is required, it
is in giving weight to speculative risks, backed up by little
or no evidence, when benefits for parents making choices are clear,
and research has only just begun. As we remarked earlier (paragraph
8), "routine" IVF and PGD is now widely accepted if
not supported across society. Similarly, there is support for
embryo research that has a clear scientific and medical rationale.
However, in the early stages of the Parliamentary debate in the
mid-late 1980s, a majority of MPs were doubtful if not actually
opposed to these practices. It is our belief that, similarly,
experience with new forms of PGD and research will demonstrate
that they too can contribute to solving real problems faced by
individuals and families without the downsides feared by some.
May 2004
207 F. Fukuyama, Our Posthuman Future (Profile
Books 2002). Back
208
J. Habermas, The Future of Human Nature (Polity Press
2003). Back
209
He develops his argument, in the context of a critical survey
of regulation and recent court cases, in two recent articles:
Regulating Human Genetics: New Dilemmas For a New Millennium,
Medical Law Review, 12, Spring 2004, pp. 14-39; and Reproductive
Opportunities and Regulatory Challenges, Modern Law Review,
2004, pp. 304-321. Back
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