APPENDIX 10
Memorandum from the Christian Medical
Fellowship
EXECUTIVE SUMMARY
Introduction
Christian Medical Fellowship (CMF) is interdenominational
and has over 4,500 members throughout the United Kingdom and Ireland
who are Christian doctors and who desire their professional and
personal lives to be governed by the Christian faith as revealed
in the Bible. We have members in all branches of the profession,
and through the International Christian Medical and Dental Association
(ICMDA) are linked with like-minded colleagues in more than 90
other countries.
Our ethical code[11]
is based on the Judeo-Christian ethic as revealed in the Bible;
and is broadly in conformity with historical ethical codes such
as the Hippocratic Oath, Declaration of Geneva (1948) and International
Code of Medical Ethics (1949).
CMF is a regular contributor to official consultations
on medical ethics and past responses are available on our website[12]
including the following in areas governed by the HFEA/HGC:
— Sex Selection: choice and responsibility
in human reproduction (January 2003).
— The supply of genetic tests direct
to the public (October 2002).
— Genetics and Human Behaviour: The
Ethical Context (July 2001).
— Cloning Issues in Reproduction, Science
and Medicine (April 1998).
— Mental Disorders and Genetics: The
Ethical context (May 1997).
— Genes and the Mind (May 1997).
— Commercial Human Genetic Testing
(December 1996).
— Sex Selection (May 1993).
We welcome the opportunity to contribute to
this consultation, and are very willing to give oral evidence
later. As Christian doctors we support the use of science and
technology to prevent, treat and relieve the suffering of infertility
but believe that this should be guided by sound ethical principles
based on a profound respect for all human life as made in the
image of God (and thereby deserving of the utmost respect, protection,
empathy and care); and for marriage as the divinely ordained context
for sex, procreation and the raising of children.
Our main concerns are as follows:
1. We believe that the HFEA has exercised
freedom beyond the intentions of those framing the HFE Act in
extending its provisions to endorse new technology without proper
parliamentary review or public debate—especially with regard
to therapeutic cloning, PIGD for tissue typing and parthenogenesis.
2. The composition of the HFEA does not
accurately reflect the range of ethical views held by scientists,
ethicists and faith communities in the UK.
3. Under current funding arrangements, the
HFEA is too easily subject to being influenced in its decisions
by the vested interests of one section of the scientific community.
1. To consider (a) the balance between legislation,
regulation and reproductive freedom? (b) the role of Parliament
in the area of human reproductive technologies? and (c) the foundation,
adequacy and appropriateness of the ethical framework for legislation
on reproductive technologies?
1.1 Reproductive freedom is not absolute
and so there needs to be enforceable primary legislation governing
decisions about artificial reproduction which establishes core
ethical principles and clearly defines boundaries that cannot
be crossed. Difficult and emotive cases with high media profile
should not lead to new case law that moves those boundaries. A
regulatory authority like the HFEA is necessary to enable decisions
to be made on new technological developments within the field;
but this must be the servant of primary legislation making decisions
only within its bounds. The regulatory authority should be fully
representative of the range of ethical views on these issues;
and all vested interests of members must be openly declared. All
major decisions must be subject to public consultation in which
both those on committee and those giving evidence are representative
of the range of views in society at large. Whilst the input of
scientists and the biotechnology industry is essential, decision-making
must be ruled by ethical principle and not their vested research
and commercial interests.
1.2 Parliament should take a clear lead
in setting the boundaries within which the reproduction "industry"
can work. In recent years we have seen new methods licensed or
endorsed by the HFEA without a clear indication of the legal status,
and without proper public or parliamentary debate[13]
and there are further new developments that may fall outside current
legislation.[14]
The safety and ethical issues these raise need to be openly discussed
and carefully considered, in a manner that is transparent to the
public and allows them full engagement with the discussion.
The HFEA has the responsibility to monitor and
control research under the Act and to report to Secretary of State
on developments; and must not usurp the role of Parliament in
altering statutory boundaries nor campaign on changing specific
provisions. In view of the current review there should be a moratorium
on all new developments to prevent any unregulated practices in
the UK, and to allow time for discussion on new comprehensive
primary legislation.
1.3 We believe the current ethical framework
for the legislation is inadequate and many of us have grave reservations
about both the use of donor gametes, and about any reproductive
research or treatment involving freezing, destructive research
or disposal of human embryos. We believe that decisions about
artificial reproduction should respect both the integrity of the
marriage bond and the humanity of the embryo and that it was the
failure of the Warnock report and HFE Act to define these clear
boundaries that has led to almost all of the recent developments
that have caused such public disquiet.[15]
Once donor gametes and embryo research/disposal is allowed, such
developments logically follow and cannot be controlled.
We also believe that freedom of choice must
be balanced with the need for responsibility towards all those
on whom the decisions impinge: parents, existing children, vulnerable
third parties, and that in particular the rights of the resulting
embryo/fetus and child must be paramount in the decision-making
process.
Many of us hold a high view on the status of
the human embryo and share this with many in the medical profession,
faith communities and society generally; and yet we have been
consistently marginalised whilst ethicists and clergy with extreme
views on the disposability of embryos[16]
have been welcomed onto the HFEA and its committees. This is profoundly
undemocratic.
2. To consider the provisions of the
Human Fertilisation and Embryology Act 1990 in the context of
other national and international legislation and regulation of
medical practice and research
— To include related legislation such
as the EU human tissue directive, and law covering human rights,
surrogacy, adoption and abortion.
— To include relevant declarations
and statements by international bodies.
— To compare the safety and welfare
provisions of the Human Fertilisation and Embryology Act 1990
with those that cover other areas of medical practice.
2.1 Medicine, science and technology are
increasingly global; and the internet and the ease of international
travel have made national laws on reproductive technologies increasingly
difficult to enforce. In order to uphold the right and duty for
states to make laws in the best interests of their citizens it
is essential that nations cooperate with each other in respecting
each other's national legislation and preventing reproductive
tourism. UK law should ensure that clinics licensed by HFEA are
not permitted to import embryos obtained from abroad using techniques
illegal in the UK, nor export embryos created here by techniques
that are illegal abroad.
2.2 All clinics offering sperm donation
should be licensed under the Act so that their practice can be
regulated and reviewed with regard to health and safety, labelling,
and counselling of both donor and recipient. Clinics in this country
should not be permitted to sell sperm over the internet. The difficulties
raised by a woman who returns to the UK pregnant with a child
conceived through illegal techniques must also be discussed. It
is desirable that such situations should be avoided as far as
possible—perhaps requiring other countries to refuse to
treat UK residents.
2.3 The UK is increasingly out on a limb
with law on reproductive technology that is amongst the most liberal
in the world. Many countries have legislation that prohibits embryo
freezing, experimentation or disposal[17]
and many others are now putting in place legislation that bans
both reproductive and therapeutic cloning. Furthermore this more
conservative legislation is coming not just in Islamic and Catholic
countries but is getting support from broad coalitions from both
traditionally pro-life and pro-choice camps who are concerned
to place limits on the manipulation of life.
2.4 The Declaration of Geneva (1948) stipulates
that doctors "should maintain the utmost respect for human
life from the time of conception" and in like manner the
International Code of Medical Ethics (1949) says that a doctor
"must always bear in mind the obligation of preserving human
life from the time of conception until death". The Declaration
of Helsinki (1975) says that in biomedical research "the
interest of science and society should never take precedence over
considerations related to the well-being of the subject".
"In any research upon human beings, each potential subject
should be adequately informed of the aims, methods, anticipated
benefits and potential hazards for the study . . ." and "the
subjects should be volunteers". "It is the duty of the
doctor to remain the protector of the life and health of that
person on whom biomedical research is being carried out".
Embryo research and disposal violates these ethical principles.
2.5 The statutory duty bestowed upon the
Secretary of State by section 1(1) of the NHS Act 1977 is: ".
. . to continue the promotion in England and Wales of a comprehensive
health service designed to secure improvement—(a) in the
physical and mental health of the people of those countries, and
(b) in the prevention, diagnosis and treatment of illness, and
for that purpose to provide or secure the effective provision
of services in accordance with this Act." Infertility is
not an illness per se; but rather the symptom of an underlying
disease process. Couples have a liberty rather than a right to
reproduce; and the state arguably does therefore not have a reciprocal
duty to provide infertility treatment. Furthermore it needs to
balance the high costs and low success rates of much infertility
treatment[18]
against the costs and success rates of other curative and palliative
procedures offered on the NHS.[19]
We do not accept that same sex couples (who are not in any sense
ill) should be eligible for access to NHS reproductive services.
Neither can a single woman who is fertile be considered ill such
that she should be provided with sperm donation through the NHS.
Resource limitations demand that infertility treatment is limited
to couples that cannot procreate as a result of illness in either
partner.
2.6 A comprehensive strategy for dealing
with infertility needs to deal equally with prevention of infertility
and promotion of alternatives. This raises much deeper sociological
issues: the promotion of embryo[20]
and baby adoption[21]
as alternatives to embryo disposal and abortion,[22]
and the prevention and proper treatment of the sexually transmitted
diseases that account for so much infertility.[23]
2.7 Adoptions in the UK are subject to comprehensive
statutory guidelines and procedures in order to ensure the safety
and security of the adopted child; and yet reproductive technologies
can be employed by anyone with the financial means or living in
a favourable postcode area. Given that IVF children face many
of the same problems of identity as adopted children there should
be more consistency between criteria for adoption and for using
reproductive technologies.
2.8 Under s 1(1)d of the Abortion Act (as
amended by the HFE Act) babies can be aborted up until term if
there is "a substantial risk" that the baby might be
`seriously handicapped'. That this provision is increasingly out
of line with public opinion and being abused has been recently
demonstrated by the Joanna Jepson case in which a baby with cleft
palate was aborted at 28 weeks gestation. In view of this and
improvements in viability (such that babies at 22-24 weeks are
now on the limits of viability) we recommend that the law should
be changed so that no baby that would be treated actively at the
same gestation in a neonatal unit should be aborted.
2.9 The HFEA should have power and funding
to commission research into relevant medical and social issues
of the techniques they regulate. Regulation is not enough—society
needs information on the results, far broader than just the number
of babies born. Such research, establishing the safety, efficacy
and social impact of already existing procedures should be given
preference over research into reproductive technologies. For example
into the incidence of congenital abnormalities in babies born
after PIGD, IVF and ICSI[24]
or social and psychological effects of PIGD "search and destroy"
procedures on those surviving with the `selected out' condition.
(eg thalassemia) Very late terminations of pregnancy became legal
in 1990. There is an urgent need for information as to how the
several hundred women who have undergone such procedures have
fared, particularly where the fetus had a non-lethal abnormality.
3. To consider the challenges to the Human
Fertilisation and Embryology Act 1990 from (a) the development
of new technologies for research and treatment, and their ethical
and societal implications and (b) recent changes in ethical and
societal attitudes
— To include new areas of research,
treatments and interventions, such as cloning, cell nuclear transfer,
transplants of ovarian and testicular tissue, embryo splitting,
selection of genetic characteristics (including sex selection),
stem cell therapy and the use of immature gametes.
3.1 Many controversial new technologies
have been developed by application of the controversial ethical
presuppositions of the HFE Act—namely that donor gametes
and embryo freezing/experimentation/disposal are admissible: PIGD,
Savour siblings, Therapeutic cloning, Parthenogenesis. It is essential
that parliament revisits and reassesses these core principles
in the light of subsequent developments.
3.2 Pre-Implantation Genetic Diagnosis (PIGD)
should be kept for the detection only of serious single gene disorders,
although even for this indication societal attitudes are changing
with the rise of the disability rights movement and concerns about
the use of genetic knowledge for eugenic ends (ie The elimination
of "genetically inferior" human beings before birth
such that the number of children born with Down's syndrome and
other parentally detectable genetic conditions is falling dramatically).
The number of children born following the use of PIGD is still
very small so its long-term safety has not yet been fully evaluated.
PIGD should not be used for tissue typing or sex determination.
3.3 Saviour siblings. The use of PIGD and
embryos disposal to produce tissue matched donors for siblings
with inherited genetic disease such as thalassemia is undesirable
due to: the degree of stress on the mother because of the low
success rate and need for many eggs; the destruction of embryos
in the selection process; the unknown effects on sibling relationships;
the expense and technically demanding nature of the laboratory
work.
3.4 Sex selection. We endorse the overwhelming
public support for rejecting sex selection for family balancing
either by sperm sorting techniques or PIGD.
3.5 Therapeutic cloning to produce embryo
stem cells. We have consistently argued against this practice
on grounds that it is unproven in terms of therapeutic potential
in human and mammalian trials; unethical because alternative treatments
exist; unsafe because of the genetic abnormalities in mammalian
reproductive clones produced by the same process; dangerous because
of the slippery slope to reproductive cloning and unnecessary
because of the existence of ethical alternatives in the use of
"adult" stem cells from cord blood, children or adults.
We believe that the Donaldson report, on which the decision to
legalise therapeutic cloning was made, was based on yesterday's
science and an overly pessimistic view of the versatility of adult
stem cells to provide treatments for patients with degenerative
conditions such as Parkinson's disease and Alzheimer's. We are
also very concerned about difficulties identified in research
with embryo stem cells (uncontrolled growth, difficulty to culture
and neoplastic potential) and furthermore believe that both parliament
and the general public have been misled about the scientific facts
bearing on this debate. We are also deeply concerned at the way
the democratic process was undermined in the way the legalisation
of therapeutic cloning was whipped through parliament on the advice
of scientists who represented only one side of the argument without
most MPs attending the debate.
3.6 The use of ovarian tissue. Where this
is taken and stored prior to chemotherapy in a person there is
little ethical problem, though attention should be paid to safety
and follow up of the children. But with respect to the use of
tissue from aborted fetuses, apart from our concern that the end
does not justify the means in research, we believe that the HFEA
was wrong to ignore the intuitive "yuk factor" felt
by the majority of the population. The potential psychological
effects and social oddity of being the genetic offspring of a
foetus, as well as a general lack of necessity for such a procedure,
should cause us to reject this option outright.
3.7 We agree that donor anonymity should
be abolished but this should not be retrospective as this would
be highly unjust for those who donated because their anonymity
was part of the contract. Lack of anonymity is likely to result
in a fall in donor numbers but this may well be a temporary result.
Sensitive recruitment is needed especially among minority ethnic
groups. However with the regular use of ICSI has the need for
donors not been reduced? Parents should be encouraged to be open
with their children as to their genetic origins since deception
is inherently undesirable.
3.8 New techniques. We believe that there
should be a moratorium on the development of all new techniques
not currently covered by the HFE Act until revised primary legislation
is in place.[25]
3.9 Ownership of gametes and embryos. In
view of the point made in above it is reasonable for the father
to have greater "rights" than in a pregnancy conceived
without "extraordinary means". The matter of the use
of the embryos in situations of divorce or separation should be
included in the pre-IVF counselling and agreements signed by both
parties in person. Without this the agreement should be invalid.
3.10 The use of gametes and embryos posthumously
should not be permitted as not being in the best interests of
the child, and because the marriage relationship has ended.
4. To consider the composition, expertise
and approach of the Human Fertilisation and Embryology Authority,
its code of practice, licensing arrangements and the provision
of information to patients, the profession and the public
4.1 It is perhaps inevitable that scientific
experts on the HFEA will be enthusiasts for new research and development;
but it is essential that they also have some training in ethics
and that those providing ethical input should reflect the diversity
of views within the medical profession, faith groups, disability
rights groups and society generally rather than being polarized
by the exclusion of all people who for example take a high view
on the moral status of the embryo. The current balance in favour
of the non-expert members should be retained and all potential
conflicts of interest should be declared. Faith communities should
be represented not just by those sympathetic to the ethics of
the biotechnology industry.
4.2 In order to ensure confidence in the
HFEA there is a need for much more transparency with respect to
conflicts of interest and decision-making and more public accountability.
It is unclear what bearing public consultations have on decision-making.
Public consultations must not be just a listening exercise to
satisfy the critics, but the HFEA must respect and be seen to
take on board the concerns of individuals and groups who invest
huge amounts of time and resources in contributing to the debate,
and yet often feel marginalised and excluded from the decision-making
process.
4.3 The HFEA Code of Practice must be fully
in line with the provisions of the Act and not add to, contradict
or distort the basic ethical principles on which the Act is framed.
The principle remains that the HFEA is servant of the Act, not
its framer.
4.4 Licencing arrangements. There should
be no incentive financial or otherwise for the HFEA to award licences.
Any member with a perceived conflict of interest regarding any
individual licence should be excluded from the decision-making
process to maintain impartiality. In addition the HFEA should
gain its income directly from government on the basis of a predetermined
budget as the current arrangement whereby a substantial amount
of income comes from licensing fees is open to financial vested
interests.
4.5 Public information. There must be far
greater transparency and public accountability in the decision-making
processes of the HFEA across the whole range of activities. Resources
should be made available for this so that questions asked by members
of the public about the HFEA's composition, activities and decisions
are much more fully in the public domain.
May 2004
11 www.cmf.org.uk/ethics/ethcode.htm Back
12
www.cmf.org.uk/subs/subs.htm Back
13
eg Therapeutic cloning, PIGD for tissue type and Parthenogenesis. Back
14
eg Human-human chimerical embryos, human-animal hybrid embryos. Back
15
eg Paternity disputes, PIGD for sex selection and tissue typing,
postmenopausal conceptions, Embryo mix-ups. Back
16
eg John Harris and the Bishops of Rochester and Oxford. Back
17
Italy has very recently tightened it laws to prohibit these practices. Back
18
IVF has a success rate of 25% per cycle and costs £8-16,000
per "take home baby". Back
19
The annual costs of IVF treatment under new NICE guidelines is
£400 million pa. Back
20
Such as www.snowflakes.org Back
21
Baby adoptions have fallen from 15,000 pa in the 1960s to about
200 pa now. Back
22
About 70,000 babies have been born through IVF since 1978 yet
there are 180,000 abortions a year. Back
23
Chlamydia infection affects 10% of women and is itself increasing
20% each year. Back
24
Particularly following a recent report from the University of
Porto in Portugal indicating that using sperm from men with low
sperm counts results in more genetic defects in resulting embryos,
and an increased risk of imprinting disorders. Back
25
Partenogenesis, human or animal chimeric procedures, production
of gametes by artificial means (eg from somatic cells). Back
| 
