Preimplantation Genetic Diagnosis

This response to the Public Consultation Document on Preimplantation Genetic Diagnosis is made on behalf of the 460 churches of the Fellowship of Independent Evangelical Churches.  It also undoubtedly articulates the views of the vast majority of the estimated 1.25 million evangelical Christians within the UK.

An Appropriate Ethical Framework
We note (paragraph 1) that comments concerning the use of preimplantation genetic diagnosis (PGD) are sought which are "set in an appropriate ethical framework".  This is to be welcomed, for without such a framework we firmly believe that ethical matters tend to become merely utilitarian in nature - and history contains sufficient episodes when humans have been used in this manner, that is, as "means to an end", to make us fearful of such downgrades.

Therefore we are not shy in presenting our ethical framework as that of historic, biblical Christianity.  Of course, this worldview is not embraced by all, but even non-Christians will concede that it has provided an unparalleled foundation for the development of good medical ethics and practice for many hundreds of years.

We have a particular interest in PGD because it focuses on human life itself. PGD inevitably questions the meaning, purpose and value of human life, as well as the biological and social implications of, for example, childbearing, sexuality, and the family.  In addition, some of us are involved, professionally and voluntarily, in counselling and providing practical care for those with genetic disorders.  And, of course, we are not immune to the issues of genetic handicap because many within our own constituency and among our ‘neighbours’ are so affected.

The Nature and Moral Status of the Human Embryo
First and foremost, we consider it essential to assess the nature and the moral status of the human embryo, the very subject of PGD.

The Warnock Report (1984), and most subsequent related documents, have signally failed to make such an assessment.  The Public Consultation Document is similarly lacking in this respect. How medical treatments or scientific protocols can be devised without first determining the characteristics of the patient is beyond our comprehension; such a lack of clarity and diagnosis is certainly a gross departure from the rigours of traditional medical practice and good science.  We fear that the Warnock Report’s vague assertion that "... the human embryo is entitled to some measure of respect ..." has become unthinkingly embedded in the minds of too many policy makers as if it were an absolute moral principle upon which the future of human embryos can be settled.

Thankfully, the nature and moral status of human life is a foundational plank in the Christian ethical platform.  Human life is so vastly unlike all other lifeforms that we are described as "created in the image of God" [Genesis 1: 27].  The application of this doctrine, when allied to the fact that life begins at fertilisation, is that all human life must be cherished and protected.  And since human embryos, whatever else they may or may not be, are humans (indubitably containing the Homo sapiens genome), and living (otherwise PGD is in vain), they too demand our utmost respect and protection.

We, and they, are not "cogs in a mechanistic universe", nor are we mere biological material, so to treat any "created in His image" as if they were, is simply wrong.  It is also specious to argue that because human embryos are small and generally unseen they are of limited value and therefore may be treated in sub-human ways, as in, for example, destructive experimentation.  Such thinking is now the self-evident legacy of the Warnock Report’s 14-day rule, which still remains both arbitrary and unscientific.

The Practice of In Vitro Fertilisation
We also want to assess the initial stage of the PGD process, namely, in vitro fertilisation (IVF).  PGD implicitly accepts, indeed, depends upon, IVF.  We consider it a dangerous venture. It is not just the excessive use of hormones, the physical and psychological demands, the high costs, or the general lack of success that concern us.  Our principal objection is that we are totally opposed to any procedures that ‘select’ human embryos, or produce ‘spare’ human embryos whose future is to be frozen and stored, destructively experimented upon, or simply destroyed.  It is our understanding that IVF, as practised in the UK, always includes these procedures.

The Nature and Moral Status of Children
Some men and women will never become parents.  For others, because of various physical and mental abilities, parenthood will be fraught with extra difficulties and choices.  Furthermore, we would affirm that it is not our ‘right’ to have children - they are gifts from God [Psalm 127: 3].

While we recognise that all couples would like healthy, and so-called "normal" children, such a goal is quite unrealistic.  It may seem twee, and even politically correct to ask, who among us is not handicapped?  But such a profound question needs to percolate into our medical and social policies.  We would maintain that everybody has some degree of handicap, whether it is physical or mental, otherwise we would all aspire to be Olympic champions and Nobel laureates.  Part of the glory of the human race is our diversity.  Furthermore, dependency is a wonderful human attribute; at different times of our lives some of us provide love and care, some of us require love and care.  Therefore we reject the notion that every technological means should be used to enable women to bear only the "best" children, and others, of lesser quality, do not have "a life worthy to be lived".  We fear that PGD will rapidly become another step towards total quality control of all our children, who should be cherished rather than selected.

The Nature and Moral Status of the Handicapped
Our society has an uneasy attitude towards the handicapped.  We (quite rightly) build access ramps for them and legislate against their discrimination, yet we are often awkward in their company.  To compound such hypocrisy we already employ sophisticated mechanisms, by means of prenatal diagnosis (PND), in the hope of ridding our society of them before birth, and now, by means of PGD, even before implantation.  This is the new apartheid, a form of discrimination that determines whether someone has "a life worthy to be lived".  What does this "search and destroy" mentality say to those who are already disabled members of our society?  Does it not cruelly say, "We don’t want another like you"?  Similarly, what does it say to those who are predisposed to become handicapped later in life?

Increasing selfishness and utilitarianism lie at the heart of these wrong attitudes.  In stark contrast, the Christian view of handicap is robust and compassionate.  The handicapped child is still human, still made by God [Exodus 4: 10-12] and part of the great Christian hope is that all handicaps are but temporary; they will disappear [Isaiah 35: 5-6].  In addition, Christians are to have a special concern and care for the weak and disadvantaged of society.  Sadly, the spirit of our age encourages the notion that we should all be "big, bright and beautiful", yet most of us are not, nor will our offspring be.  If PGD is allowed to become an established procedure we will become an even more discriminatory, unjust and uncaring society.

The Modern Practice of Eugenics
Eugenics is now firmly established within our society.  True, it is not the rather crude type that characterised earlier attempts to purge our society of "undesirables".  Nowadays PND techniques, such as amniocentesis and chorion villus sampling, together with abortion, have been called "eugenics of a mild sort" (Anon, Nature, (1994) 368:572).  This "search and destroy" tactic, where abortion is offered as a cure or preventative measure, is not proper medicine.  We want no part in this practice, nor can we believe that it will ever be a praiseworthy benefit to our society. PGD is no different in kind or outcome - it is simply eugenics performed at an earlier stage of human development.  It is beyond cavil that acceptance of current PGD practices will open the door to the future genetic testing for "mild" rather than just "severe" diseases and medical ethos will become increasingly destructive, rather than curative.

The Defeatism of PGD
We are not opposed to good medical practice that seeks "to avoid, prevent or ameliorate the consequences" (paragraph 3) of genetic disorders.  For example, all of us have benefited from the Guthrie test, some of us from insulin treatment, and a few of us from somatic gene therapy.  But PGD is concerned with nothing more than detection and destruction.

The fruits of that "greatest of biological triumphs", namely, the Human Genome Project, are about to be picked.  It is a sad comment that one of its earliest uses is going to be this niggardly and distasteful augmentation of destructive PGD.

Furthermore, if PGD is allowed to become established there will be little incentive to find proper cures for these genetic diseases.  Why would research councils, medical charities and scientists devote their money, time and energy towards devising ethically-sound methods of treatment and cure, such as, for example, some forms of somatic gene therapy, when detection and annihilation procedures are already available?

PGD also has other detrimental effects, for example, upon parenthood.  It encourages the technological making of babies and takes ethical decision-making away from parents.  Parents who discover (by PND) that a preborn child has a disability may at present decide either to abort or continue the pregnancy.  Parents presented with the same dilemma preimplantation (by PGD) will have no such choice - the decision will have already been made by technicians.  Furthermore, the extra-corporeal nature of PGD, compared with PND, will lessen the emotional attachment between parents and offspring, as does IVF.  The involvement and decision-making roles of egg donors and surrogates will only serve to further complicate the issues.  Therefore such procedures will inevitably lead to a more uninvolved, unemotional type of child-bearing.  The awful possibilities for the future limiting of voluntary parenthood can, at this time, only be imagined.

The Slippery Slope Argument
In some bioethical circles this is a much-maligned concept; we disagree.  We remember the legal changes made in the 1967 Abortion Act, which gave permission, under limited circumstances, to women seeking termination of their pregnancies.  That initial permission has since become an expectation with hundreds of thousands using the poorly-defined grounds.  Legalisation creates a demand.  Furthermore, the Human Fertilisation and Embryology Act (1990) initially appeared to be the basis for strict regulation in some areas.  Yet, additional techniques, some novel, if not bizarre, circumstances, a lack of public awareness and an inability to legislate for a fast-moving technology from a clear and solid ethical framework have shown this piece of legislation to be repeatedly ineffective.  We fear the same for PGD.  Once approved it will be impossible to maintain boundaries.  It will be impossible to define "severe" and "significant" with respect to genetic disorders.  "Severity creep" will undoubtedly occur.  And whose assessment of severity will count?  It clearly will not be the patient’s, so will it be the doctor’s, the parent’s, or society’s?  Within a few years screening for more and more potential diseases, as well as sex determination, will be widespread with the consequence of more and more genetic discrimination.  Eventually, other genetic aspects, such as behavioural disorders, that commissioning parents find unacceptable will also have to be included in such testing.

Conclusions and Recommendations
1]  Life and death issues like PGD must be decided upon within a strong ethical framework, rather than upon simple utility and cost-effectiveness.  When these latter principles dominate, we all become less human.  Any form of eugenics is a filthy business.  An enthusiasm for PGD highlights another unwelcome trend in assisted reproductive techniques.  PGD is a step in the wrong direction.

2]  Therefore we would call for more research into ethically-acceptable, proper treatments and cures, such as some forms of somatic gene therapy, rather than the defeatist methods of PGD.

3]  We would call for a greater acceptance and care of those with genetic diseases, as well as more financial and practical support for their families.

4]  We would call for the better promotion of adoption, which has honourable biblical precedents, among couples who fear the outcomes of pregnancies.

5]  Finally, and above all, we are concerned to uphold the dignity and sanctity of all human life and therefore we are firmly opposed to the negative PGD practices that the Public Consultation Document proposes.

We sincerely hope that the HFEA and ACCT will create a notable turning-point in the application of genetic research to humans and ban all PGD until there exist reliable and ethically-responsible methods of treatment or cures for any of these genetic disorders.

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