Personal Submission from the General Secretary of the Christian Medical Fellowship to the Human Fertilisation and Embryology Authority and the Advisory Committee on Genetic Testing Pre-implantation Genetic Diagnosis (PGD) Article Reference: CMF Submissions; Author: Peter Saunders Introduction This is a personal submission from Mr Peter Saunders MBChB FRACS. I am a qualified general surgeon with eight years of clinical experience and I am also General Secretary of the Christian Medical Fellowship, an interdenominational organisation with more than 4,500 British doctors and 1,000 British medical students as members. I am grateful for the opportunity to comment on the issues involved in the HGAC/HFEA consultation and would be willing to help further if requested. Fundamental Principles Human beings have been individually created by God and derive their integrity and worth from the fact that they are made in the image of God -regardless of genotype or phenotype. The diversity of individual human beings is a composite of genetic, environmental, social, volitional and spiritual factors and is part of the wonder and strength of God's sovereign design. God has mandated good stewardship of creation, both of ourselves and the surrounding world, but human knowledge and wisdom are limited and may be used for evil or good. It follows that the scientific exploration of life, including its genetic foundation, is proper and consistent with God's mandate and humanity's created nature, but must be conducted within biblical constraints. The end never justifies the means. Genetic information may be of legitimate value in guiding the care of patients but the presence of a disability, either inherited or acquired, does not detract from a person's intrinsic worth. Any genetic testing should be entirely voluntary and require informed consent. But in the case of the subject being unable to give consent, genetic testing should only be carried out for the specific purpose of benefiting that individual by enabling therapeutic intervention. Killing a human individual is never therapeutic intervention. An individual's genetic information should be kept strictly confidential unless it is necessary for it be known in order to benefit the life and health of the affected individual. I therefore reject the search for and use of genetic information for the purpose of destroying an existing human life, born or unborn. Such action discriminates on the basis of genotype - and is therefore incompatible with the Judaeo-Christian ethic and the spirit of all historically accepted ethical codes including the Hippocratic Oath, Declaration of Geneva (1948) and the International Code of Medical Ethics (1949). Doctors are required to maintain the deepest respect for individual human life from its beginning to its end - and especially to protect vulnerable human life. While they can judge the effectiveness of treatments, they are in no position to judge any human life as unworthy of life. The role of medicine is to diagnose disease with a view to treating it and relieving its symptoms - but diagnosis must never be for the purpose of destroying affected individuals, regardless of the severity of their conditions. Because human embryos are human beings (see below) I am fundamentally opposed to pre-implantation diagnosis (PGD) as its sole purpose seems to be to identify human individuals with and without genetic disease for the sole purpose of destroying the former and preserving the latter. The Status of the Human Embryo The status of the human embryo is central to the debate on PGD. If human embryos are human beings worthy of the utmost respect then it follows that pre-implantation diagnosis with selective embryo destruction is wrong. If embryos are not human beings then it follows that we should be more accepting of PGD in difficult circumstances. My own personal view is that human embryos are human beings with potential. The obvious corollary is that I believe we should treat embryos with the same respect that we treat other human life. There are many reasons given by philosophers and biologists as to why embryos are not 'fully human' (persons) but I believe these are all deficient. I therefore present the major arguments marshalled to lower the status of the embryo(in italics) below along with rejoinders: Embryos lack rationality Most medical ethicists today say that not all human lives are 'persons' as being a 'person' mean having a certain degree of rationality or capacity for relationship? Rejoinder: This was the thinking behind the Warnock Committee's recommendation of no embryo research beyond 14 days, as the neural crests first form 10 days after fertilisation. Others have suggested that breathing movements (12 wks), or 'quickening' (20 wks), or even the first breath of air should be the end point. It has even been argued that newborn babies are not persons since they lack 'self-awareness'. But the development of the nervous system is a continuous process beginning at fertilisation and choosing an arbitrary point on this continuum discriminates on the basis of neural function. It is therefore 'neuralist' Neuralism varies from racism and sexism only on the basis of the non-morally significant quality which is selected as the basis for discrimination. It is simply another form of ageism. Our value as human beings does not consist in our capacities or attributes but in the fact that we are human. Many embryos die Early embryos have a high mortality; about 40-70% don't reach maturity. This undermines their claim to be persons. Rejoinder: Is the value of human beings contingent on their survival rates? We don't say that refugees in Chechnya, flood victims in Mozambique or AIDS sufferers are less important simply because they have a high mortality. Similarly, if survival rates at any stage of development are low this does not justify us ending life. The general strategy of medicine is rather to save and preserve it. The figure of 40-70% may well be an overestimate anyway. No-one really knows how many early embryos die as there is no biochemical marker for fertilisation, as opposed to implantation. Many embryos are abnormal Embryos that do spontaneously abort have a high incidence of genetic (particularly chromosomal) abnormality. Can we really regard these embryos as being fully human? Rejoinder: Why shouldn't we? All of these abnormal embryos have formed from the union of two human gametes. Aren't they therefore just human lives with severe handicap, or even human lives with special needs? We would not dare say in any other sphere that the value of any particular human lives was contingent on their level of normality; far less that abnormality justified killing by disposal. Sperm and ova are equally human Sperm and ova are alive and human but we don't treat every sperm as sacred; so why should an embryo, which after all is not much further along in development, be fully human? Rejoinder: The difference is that an embryo is a genetically distinct living organism, already with a unique genotype and the ability to grow into an adult. Sperm and ova are not. They are simply haploid cells; with no inherent capacity, in themselves, to grow and divide. Hydatidiform moles are not human Some products of conception, for example hydatidiform moles, are not human organisms. Isn't there then a continuum in nature from non-humanity to humanity? Rejoinder: It may have seemed so in the past, but now we know that a hydatidiform mole is formed not from the union of male and female gametes but rather from two male gametes. It is not technically a 'product of conception' at all. Conception is a process Conception is a process which is not complete until the first cell division or implantation, so why could the process not be interrupted justifiably before it is complete? Rejoinder: Organogenesis, or the development of the nervous system, or indeed life itself is equally a process. Where does one draw the line? Isn't it better not to intervene in any process that has already started? Saying that the value of any human life depends on its place of residence (uterus, fallopian tube or petri dish) or degree of independence is once again discriminating on the basis of a non-morally significant characteristic (location)? Much of the embryo is redundant Not all tissue derived from the fertilised egg ends up in the embryo (ie some becomes yolk sac etc). This implies that the embryo is something other than a human being. Rejoinder: Perhaps, but this surely makes the embryo something more than a human being rather than something less. The cells that are destined to produce the adult are contained within it. We should then show the embryo extra respect in case we damage any component of it which is destined to be part of the complete organism; or endanger the latter's nutrition or support. To claim that we can take our 'pound of flesh' with impunity is to violate a human being. The embryo is surely best left alone. Some embryos twin Monozygotic twins make up 3 to 4 of every 1,000 births and usually divide at the embryo stage between 3 and 14 days after fertilisation. Doesn't it then make sense that each of those individuals had their origin at the stage of embryo division rather than fertilisation and that therefore all individuals have their origins after fertilisation? Rejoinder: We have to admit that it is difficult to conceive of two individuals inhabiting one body; but it does not follow that what we find difficult to conceive of cannot therefore be the case. We maintain that Siamese twins (although in one body) are two persons. There are clearly two embryos with two destinies in the embryo which twins. We have already said that the embryo is more, not less than, a single human life. We don't treat embryos as human We don't recognise embryos as human because we already use post-coital contraception which endangers their survival. Doesn't this in itself imply that they are not actually fully human? Rejoinder: We must remember that our intuitions change with time and vary across and within cultures. They only tell us about what we do or don't believe, not about the way things really are. The laws about embryo research in Britain are among the most liberal in the world and run counter to traditionally accepted ethical codes such as the Declaration of Geneva which enjoins the utmost respect for human life from the time of conception. Rather than letting our practice determine our principles, our principles should determine our practice. The embryo doesn't have a soul Even Christian theologians don't recognise the embryo as human as the embryo lacks a soul. Rejoinder: It is true that some Christians have said that human beings can be divided into body and soul but this is based on the ancient Greek idea of body and soul being separate entities; a notion which finds no support in the Bible. While it is true that all human beings survive death and face judgement (Heb 9:27), our destiny as redeemed human beings is to be clothed in a 'resurrection body' (Phil 3:21). The biblical word 'soul' (Gn 2:7) includes the body. We have bodies and are souls, rather than the other way round. Biblical principles affirm therefore that the soul and the body begin life together - and given that the body begins with fertilisation it must follow logically that the soul does also. Conclusions I find the arguments for devaluing the status of the human embryo both unconvincing and discriminatory. Rather than trying to justify retrospectively practices already licensed by the HFEA, we must return to granting human embryos the benefit of any doubt that remains about their status and treating them with the respect and protection due to any handicapped persons. Unless we can be certain that human embryos are not fully human, then surely we should show them the utmost respect. This consideration alone, rules out PGD as an option for a civilised society and is the main point of this submission. However the following other considerations further underline the need for a moratorium on current practice. Other Considerations Problems with accurate diagnosis The presence of an abnormal gene, even if correctly identified, is often not predictive of the future development of an abnormal trait because many abnormal characteristics display polygenic inheritance or incomplete penetrance. The dangers of the slippery slope PGD and embryo destruction for severe genetic abnormalities will lead inevitably to a slippery slope whereby genes for trivial genetic disorders or undesirable non-pathological traits are screened for. This will be an inevitable consequence of parental demand and commercial interest as 'portakabin technology' cannot be effectively regulated other than by a blanket ban. Changes in attitudes to children PGD will create an environment where embryos, and therefore fetuses (and ultimately children), will be regarded as commodities which can be selected or disposed of. Children are a gift, not a right and parental guardianship therefore confers a responsibility to protect, not a right to destroy. Changes in attitudes to the handicapped PGD, in allowing selection on the grounds that some lives are not worth living devalues the lives of those who are living with disability. Many people with disability lead useful and fulfilling lives; and even for those whose lives are very difficult, our proper response as a society should be to provide care and support for affected individuals and families. Specific Questions in the Consultation Document My answers to the specific questions raised in the Consultation Document follow from the above: Paragraph 28 Do you agree with the proposal that, subject to appropriate clinical considerations, the current practice of licensing clinics to perform PGD for a limited number of specific serious inherited conditions, including sex linked disorders and chromosome abnormalities should continue? No. Paragraph 30 In due course should there be restrictions on who might have access to PGD? No-one should have access to PGD. Paragraph 35 Should the seriousness of a genetic condition be a matter of clinical judgement based on general guidance? If so, what aspects might such general guidance cover? No, never, if this judgement is a prelude to a decision about whether a life is worthy to be lived. Paragraph 36 Have you any comments on the general issue of replacing carrier embryos? All dividing embryos (including all carriers) should be replaced in the uterus at the time most likely to maximise survival. This excludes PGD and selective disposal in toto but allows for IVF under certain conditions. Paragraph 38 Can the principle of the Welfare of the Child ever be compatible with the decision to begin a pregnancy knowing that a child will be born with a genetic disorder? Yes indeed. The principle of the Welfare of the Child is always compatible with the decision to begin a pregnancy knowing that a child will be born with a genetic disorder because all human life is of value and worth, whatever the degree of handicap. Once a pregnancy has started (at fertilisation) there is already a life to consider and protect - so the question becomes one of maximising the potential of that already existing life. The alternative of destroying an existing human life is never compatible with the principle of the Welfare of the Child. Paragraph 45 It is suggested that if a disorder is of late onset, this should be one of a number of factors, but not an overriding factor, in determining whether PGD should be offered. Do respondents consider this to be the correct approach? No. No parent or carer is capable of deciding for the embryo whether its future life with a disorder of late onset is worth living. Paragraph 47 Should guidance distinguish between PGD for genes that are highly predictive of a serious disorder and those where the genetic component is more complex? No. No PGD should be allowed, even for serious disorders. Should the use of PGD for any indication be the subject of clinical judgement, and as such left to practitioners and individual patients to decide? Definitely not, as the embryo, whose interests are primarily at stake is not party to this decision, and the decision is being made without concern for the welfare of affected embryos. Paragraph 52 In the context of PGD, and given the current practical limitations, should there be any restrictions on the number and range of tests to be carried out in the absence of a clear genetic or medical indication? Yes indeed. PGD should never be carried out with the aim of selecting embryos for preservation or destruction. Paragraph 58 Should centres be licensed for PGD in general or in relation to each specific test and condition? Should the HFEA record each new condition, mutation or test carried out by individual centres? No centres at all should be licensed for PGD and the licenses already granted to existing centres should be revoked. Paragraph 60 Do respondents think that the general approaches proposed for the regulation of PGD are appropriate? No. PGD is inconsistent with the role of medicine and should not be performed in this country. Instead resources should be put into the diagnosis and treatment of genetic disorders and the support of affected families. Couples faced with the high probability of having a child with a severe genetic disorder should be encouraged either not to have a child, or to adopt (an option not mentioned in the consultation document), or to have a child without genetic testing (except when this is done with the sole aim of enabling early therapeutic intervention to treat, rather than to destroy, that child) Summary of Main Points The main points of this submission can be summarised as follows: All human beings are of great worth as they are created in the image of God who endows them with value which is independent of any genetic disability. We have a God-given mandate and responsibility to discover the causes and treatment of genetic disease so that we can treat and support individual sufferers as effectively as possible. Destruction of a human life on the basis of genetic abnormality is never justified at any age and the arguments used by philosophers and biologists to devalue the value of the human embryo are fundamentally flawed. Human embryos are human lives and so PGD must never be used for the purposes of selecting some embryos for preservation and some for destruction. The use of PGD devalues the worth of those already living with handicap and treats children as commodities. If PGD is allowed to continue it will lead to the generation of a slippery slope whereby commercial interests and parental preference will lead to demands for PGD to be used for more and more trivial conditions. PGD, being 'portakabin technology', will be impossible to regulate. No further licenses for PGD should be granted in this country and existing licenses should be revoked. The resources that would have been put into PGD should instead be put into the diagnosis and treatment of genetic disorders and the support of affected families. Couples faced with the high probability of having a child with a severe genetic disorder should be encouraged either not to have a child, or to adopt, or to have a child without genetic testing (except when this is done with the sole aim of enabling early therapeutic intervention to treat, rather than to destroy, that child). Peter Saunders MBChB FRACS General Secretary genetics index resource centre Copyright ©2002 Christian Medical Fellowship. Comments, suggestions, information: email webmaster@ethicsforschools.org CMF is a registered charity (No 1039823)