Preimplantation Genetic Diagnosis, Disability and a Catholic Ethic of Caring
John Kleinsman
Issue 9, April 2003
"I no longer believe that we can get by in a caring society, which is the sort I'd prefer, by behaving as if we're accountable only to ourselves."
--Rosemary McLeod, (Dominion Post, Thursday 3 April 2003)
This article highlights some of the broader societal implications associated with the routine use of Preimplantation Genetic Diagnosis – a form of genetic testing – for the express intention of promoting the birth of healthy children.
Background
Genetic testing has been used in New Zealand and other countries for many decades. Testing for Phenylketonuria (PKU), a genetic defect that causes severe developmental delay, but able to be controlled by diet, is one example. Ongoing developments, however, have greatly extended the scope of genetic testing. There is an increased range of tests now available, as well as the capacity to test with ever-increasing accuracy and sensitivity, and to carry out testing at the earliest points on the continuum of human life.
The promises and benefits of genetic testing are real and immense. They include the ability to more accurately predict and diagnose a greater variety of health problems in individuals and families. At one level, genetic testing can be viewed as simply a more powerful and effective 'means' for continuing to do what humans have always done; resisting disease and death and promoting well-being. At a deeper philosophical and cultural level, however, various aspects of genetic testing are having an impact on our attitudes towards such things as parenting and individual diversity. This is particularly so with respect to its use in conjunction with assisted human reproduction.
Genetic testing in the area of human reproduction falls into three broad categories. Firstly, prospective parents wanting to know the likelihood of future children having disabilities or diseases, and on the basis of such knowledge, deciding whether or not to have children. Secondly, parents who have already conceived wanting assurance that their foetus is healthy. For this group, the outcome of genetic testing of the foetus (known as pre-natal diagnosis) may involve them in deciding whether or not to abort. More recent technological innovations now allow for the testing of embryos prior to implantation in the womb – a practice known as Pre-implantation Genetic Diagnosis (PGD) – and this has given rise to a third category.
PGD first requires the creation of embryos using standard in vitro fertilisation (IVF) techniques. Then, when an embryo reaches eight cells in its development, and prior to implantation, one or two cells are removed and screened for the presence or absence of particular traits or qualities in order to distinguish certain characteristics such as the presence or absence of disease or other particular features. Some commentators attach the label "Designer Babies" to the children of parents from this group.
Catholic teaching insists that IVF is not, of itself, a morally neutral activity. Of all its objections to IVF, the most serious is that it almost inevitably involves the deliberate creation of extra embryos that will never be implanted. [1] Some estimate that only 2.8% of all IVF embryos undergoing PGD actually result in an established pregnancy. On this matter, Catholic teaching states: "The fruit of human generation from the first moment of existence, that is to say, from the moment the zygote has formed, demands the unconditional respect that is morally due to the human being in his [or her] bodily and spiritual totality." [2] Therefore, the discarding of embryos, for any reason, is unacceptable. [3]
In contrast, another school of thought believes that the result of conception up to a certain number of days cannot yet be considered a personal human life. This group regards early stage embryos as suitable subjects for research and experimentation; while embryos must be treated with a certain respect this does not extend to an absolute right to life and their destruction is seen as permissible if there are potential benefits for society.
In debating the use of PGD the Church stresses that there are also other moral issues besides the question of embryo "safety". As mentioned above, these issues concern, in particular, the direction in which this technology might take us as a society because of its potential to redefine fundamental understandings of parenthood and children, and our acceptance of human diversity.
While this article focuses on the ethics of using PGD to ensure healthy embryos, there are other notable applications of the technology. These include the selection of particular embryos not for the sake of their own health, but to help a "relative" (e.g. a seriously ill sibling), and the use of PGD to enable parents to "enhance" their otherwise healthy children by selecting particular traits such as gender, intelligence or longevity.
Desirable and Undesirable Children?
Proponents of PGD employ a variety of arguments. Some view it as a logical extension of the parental duty to promote the health of one's offspring, a duty now able to be expressed in a much more proactive way at the antenatal level. Embryo selection is thus promoted as an expression of 'good parenting'. [4]
In response it needs to be said that this description masks what is really happening. While 'promoting health' and 'care' are often synonymous actions, to speak of the 'discarding' of some embryos as "parental care" involves the abandoning of the common meaning of this term. Healthcare is, after all, an action predicated in the interests of the subject concerned and there is clearly no benefit for the embryos discarded. An analogous example of such thinking would be to describe the axing of people from surgical waiting lists as being in the interests of their "health care". Clearly the health benefits that ensue do not flow through to those taken off the list but to those who find themselves higher up the list!
A more honest assessment of how some groups see PGD is contained in the question: 'To what extent is it permissible to selectively discard embryos when the intention is to prevent chronic conditions requiring prolonged and expensive medical care?' This question illuminates a key ethical issue previously rendered invisible: to the extent that we are prepared to tolerate such practices, we are simultaneously affirming that it is acceptable to place limits on our willingness to care for those whose life presents as a "burden". It is around this issue that the ethical debate needs to happen. If it is allowable to limit care for the 'yet-to-be-born' on the basis of "burden", then we are, in principle at least, paving the way for other groups of people perceived to be a "burden" to be treated likewise.
A further line of argument sometimes used to justify embryo selection promotes the idea that parents are in fact acting in the best interests of the child who wouldn't want to be born like this. (In ethics this approach is sometimes termed "substituted judgement", a valid method for decision making in certain circumstances.) Those who think thus view the rejection of certain embryos as an act of parental responsibility consistent with the duty of protecting children from harm. Michael Herbert and others believe this way of thinking is premised on the view that disability is so bad that a baby is better never being born at all than being born with a disability. [5]
Such a views reflects a shallow understanding of what it is to be human, one that judges quality of life according to superficial criteria. Disability advocacy groups constantly remind us: 'We are more than our genes!' If, wittingly or unwittingly, we allow genetic makeup to become the overriding determinant for existence who will define the criteria? How will they be defined? Human dignity becomes susceptible to whatever society values at a particular time and the right to life is contingent on the judgements of others, judgements whose reference point need be nothing more than the subjective likes and dislikes of a society? Furthermore, there is logically nothing to stop us from judging other "conditions" such as mental illness, or even future likelihood of disease as also being undesirable.
In the words of the American Bishops: "Carried to an extreme, screening could help shape a nightmarish future, because it conveys precise ability to draw distinctions among people based on their genetic makeup." [6] Thus, "the new genetics may actually serve to further the oppression already experienced by those who identify, and are identified, in society as having disability or difference." [7] In Zimmern's words: "if PGD is used as a tool to eradicate as many disabilities as possible in society, then it ... discriminate[s] against people with disabilities: those who are already living with disabilities and those potential babies who may have lived very successfully with such disabilities." [8] In Britain a working party formed in conjunction with the Advisory Committee on Genetic Testing has already admitted "that PGD may inspire a prejudicial climate against children (as well as their parents) with what are perceived to be 'preventable' genetic disabilities." [9]
Herbert asserts that the conditions already exist for such a prejudicial climate in as much as Western society has become increasingly supportive of the belief that "in order for meaningful life to exist certain minimum, 'normal' criteria must be met. Accordingly, if these arbitrary criteria are not satisfied, then life is just not worth embarking on." [10] The belief is upheld by a common perception that there is a negative correlation between being disabled and being happy, that having any sort of disability makes a person 'worse off'.
Challenging such thinking, Harriet McBryde Johnson, lawyer and disability self advocate writes: "Are we 'worse off'? I don't think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own. We have something the world needs." [11]
Mary Jane Owen, is another disability self advocate who vigorously rebuts the idea that life can be judged according to criteria of normality. "Over the years various medical authorities and strangers have suggested they found my various impairments so depressing they would rather be dead than slip into such a body. But I'm about as happy and content with my life as anyone I know. I would not trade my situation with anyone else ... We seek better funding for rehabilitation, not a quick fix." [12]
Judging lives accordingly to criteria of normality is inconsistent with the Judaeo-Christian ethic of life and its emphasis on dignity as intrinsic; that is, depending not on whether we are valued by others, nor whether we measure up to some predetermined standard, nor on our ability to be a productive and useful member of society, but based solely on the fact that we are each created by God in the divine image. All human life has equal meaning and value by virtue of the fact that it originates in and from God.
From a specifically Judaeo-Christian biblical perspective it can also be argued that routine use of PGD for embryo selection would undermine the "covenantal" nature of families. A covenantal understanding of family highlights that family belonging is, of its nature, unconditional, a reflection of God's own unconditional love. The selection of certain traits in embryos introduces a "conditional" dimension into their existence: "Children are admitted to a family only if they pass a test, destroying the fabric of an unfolding and expansive familial love." [13]
Brent Waters also suggests that the unconditional quality of the parent-child/community-child relationship is further undermined by the perception that children are "projects to be undertaken". It has to be admitted that PGD is another step along the continuum that, beginning with modern contraception, has seen parents take progressively more control over child bearing. To the extent that IVF and PGD push us further in the direction of seeing our children more and more as artifacts, as products of conception created by adults and subject to our willful manipulation, then it will become increasingly difficult to dismiss the notion of children as "commodities". That the term "quality control" (historically associated with the manufacture of consumer products) has been employed by some to describe PGD highlights a widespread concern that this practice will contribute towards children increasingly being seen as commodities.
The Christian notion of 'life as a gift from God' exists as a significant challenge to the idea that some children are desirable and others undesirable. The broader societal implications of PGD deserve to be debated seriously in any society about to propose legislation in this area.
The Challenge: Communities of Care
Medical practice is intimately connected with the relief of suffering in its many forms. For those who insist that suffering is an evil and that it is desirable to eliminate all needless suffering, routine PGD appeals as a logical proactive medical means for preventing apparently meaningless suffering. Yet a significant counter exists to this logic.
Ethicist Stanley Hauerwas challenges the idea that the primary purpose of medicine is to prevent suffering. He offers a different perspective arguing that medicine's primary purpose is to provide a link between the 'sick' and the 'healthy'. For Hauerwas, good health care is ultimately about enabling humans to live out an "embodied existence", that is, enhancing the opportunity for persons to be in relationship with others. [14] His perspective is based on a vision that defines "quality of life" firstly in terms of the quality of human relationships, a perspective that stands in contrast to the view - alluded to above - which holds that for meaningful life to exist certain minimum, 'normal' criteria must be met. Consequently, Hauerwas holds that it is the key role of medicine to maintain, rather than sever, a fellowship between the community and those who are suffering. From this perspective PGD no longer appears as necessarily logical or as the best medical response in the face of human suffering. This approach reflects the Catholic-Christian belief that it is our willingness to care for others, particularly those most vulnerable, which is a defining quality of human nature.
Herbert suggests that the problems presented by the birth of a child with a disability may have more to do with society and its collective values than with disability. [15] Mary Jane Owen agrees, arguing, from her own experience, that society's refusal to see the possibilities for those with disabilities is based upon an undue fear of human fragility and a denial of a shared vulnerability. For Owen, "disabilities are the normal, expected and anticipated outcome of the risks, stresses and strains of the living process itself ... an event which takes place for us all," [16] not something that happens only to an unlucky few. Accordingly, the argument that selective implantation is in the best interests of children 'who wouldn't want to be born like this', may be no more than a projection of the fears of parents and society and their desire not to be burdened.
The sense that caring for children who are disabled or seriously ill is an intolerable burden may also be influenced, at least in part, by the (perhaps implicit) belief that it is to couples and families alone that the task of nurturing and caring for children falls. In contrast to this, a Catholic-Christian approach to health-care is premised on the view that the ultimate responsibility of caring for those who are vulnerable or sick rests with the community as a whole. In a society where the common experience is one of disconnection from a vibrant community, such an ideal can seem unattainable. It is not surprising that parents lacking a strong sense of connection, in a society that views disability primarily in terms of cost, might see the call to care for the disabled and sick as an overwhelming demand requiring an unreasonable degree of moral heroism. Equally, from a societal perspective, routine embryo selection appears as an attractive way of preventing unnecessary and apparently meaningless suffering for would-be parents.
This state of affairs presents an enormous challenge for Christians. It is incumbent on churches that teach and preach a doctrine of the intrinsic value of life to also take seriously their commitment to build up communities of care. More than anything it is the personal experience of caring communities that will create the conditions for people to be more receptive to a Catholic-Christian position on embryo selection as well as other life issues. This perspective challenges us to assess the morality of PGD in terms of the integrity and choices of our communities rather than merely in terms of private parental choice.
The converse of this is that the consequences for a society in which PGD was to become more and more the norm for "responsible" human reproduction could well be communities that are less diverse, less tolerant and less caring . Can we afford to take such a huge risk? Even if such practices are never mandated by legislation, it is not beyond our imagination to envisage a situation where "natural reproduction" becomes actively discouraged. The "stigma" of not being tested and having a child with a disability, in a world where IVF and PGD are readily available, will be so great as to introduce a substantial degree of coercion. As far fetched as this might seem, it is already a reality that mothers-to-be who are beyond a certain age experience tremendous pressure to undergo amniocentesis because of the increased risk of fetal abnormality and the "concern" to avoid the births of babies with such conditions as Down's Syndrome. Good legislation around assisted human reproductive practices will seek to anticipate and protect parents from such coercion.
Conclusion
Looked at in isolation the individual case for widely using PGD to promote the birth of healthy children can be compelling. Many regard it as a matter of private choice, a right that needs to be protected by society. The culturally prevalent idea of "procreative liberty" that supports the notion that we should all be free to pursue our individual reproductive choices, ultimately reflects an ethical backdrop characterised by the fragmentation of procreation and child-rearing into a series of discrete tasks mistakenly viewed as unrelated to each other. The advocates of procreative liberty have minimal regard for the unintended cumulative effects of people's individual choices on the communities in which we live. Indeed, the very framework used to support the philosophy of procreative liberty renders invisible many of the key ethical questions raised in this article.
Meanwhile, the Catholic moral tradition and the field of bioethics challenge us to take stock of the broader personal and social implications of PGD, in particular the overall direction in which its practice may – wittingly or unwittingly - be taking us as a society. A Catholic-Christian approach to bioethics causes us to pause and consider in particular the connections between procreation and child rearing. Attention to the bigger picture shows there are very real risks and ethical concerns. PGD and embryo selection have the potential to redefine longstanding assumptions regarding the roles of parenting and families, as well as our attitudes towards health, sickness, disability and diversity. The elimination of disease and suffering is, by itself, far from sufficient as a criterion by which to determine the morality of PGD.
Many of the arguments justifying PGD also betray the (severely impoverished) idea that the value of human life can be measured by some arbitrary standard of normality, a view at times "disguised" by the belief that people see themselves as acting in the best interests of the child. There is real concern that the routine use of PGD will lead to further intolerance of diversity. The rich Gospel based values of inclusiveness, preferential option for the vulnerable, and the richness of diversity, stand as a solid challenge to those who seek to "normalise" the existence of one group based on an intolerance of genetic diversity or disability.
That said, it needs to be acknowledged that PGD has the potential to help us in the fight against sickness and disease, particularly if medical advances allow genes to be "repaired." The Catholic-Christian tradition welcomes all medical and technological advances that promote health and alleviate suffering when such advances are not at the expense of fundamental moral values.
In summary, while the overriding argument against the practice of PGD from a Catholic perspective relates to the intrinsic dignity of the embryo, deeper reflection suggests the need for strong legislative parameters around the routine use of PGD for the sake of a caring society in which human dignity, health and well-being are upheld and difference and diversity are valued and celebrated. Those responsible for forming legislation in the area of assisted human reproduction must take proper account of the wider context in which persons will exercise their reproductive choices as well as considering the intrinsic worth of human life.
Part of the cost of a diverse tolerant and caring society is the recognition that the common good places restrictions on the pursuit of individual free choice in the area of assisted human reproduction. Meanwhile, we are all challenged to recognise our shared vulnerability and to believe that the measure of a society's health and progress is its willingness to care for the most vulnerable, while actively fostering the growth of genuine "communities of care".
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[1] See John Paul II. (1995). Evangelium Vitae: The Gospel of Life. Homebush, NSW: St Pauls, n.14.
[2] Sacred Congregation for the Faith. (1987). Donum Vitae: The Gift of Life. Boston: St. Paul's Books & Media, Part I no. 1
[3] See also Catechism of the Catholic Church #2270; Nathaniel Report 5, The Moral Status of the Embryo.
[4] See Waters, B. (2001). Reproductive Technology. London: Darton, Longman & Todd Ltd., p. 109.
[5] Herbert, M. (2002). Preimplantation Genetic Diagnosis & Ethics, Chisholm Health Ethics Bulletin (Summer 2002), p.8.
[6] U.S. Conference of Catholic Bishops. (1996). The Promise and Peril of Genetic Screening @ www.usccb.org accessed August 9, 2002.
[7] Newell, C. quoted in Gillam, L. (2000). Value Messages in Pre-natal Screening, Otago Bioethics Report 9:1, p. 2.
[8] Zimmern, R. (1999). Genetic Testing: A Conceptual Exploration. Journal of Medical Ethics 25, p. 151-6.
[9] Quoted in Waters, B. (2001). Reproductive Technology, p. 106.
[10] Herbert, M. Preimplantation Genetic Diagnosis & Ethics, p.8. See also John Paul II. (1995). Evangelium Vitae: The Gospel of Life. Homebush NSW: St Pauls, #14.
[11] McBryde Johnson, H. (2003). Unspeakable Conversations @ www.nytimes.com, accessed March 19, 2003.
[12] Owen, Mary Jane, (2000). Calming the Fear and Frenzy: An analysis of Stem Cell Research from a Disability Perspective @ www.senate.gov, accessed March 6, 2003.
[13] Waters, B. Reproductive Technology, p. 118.
[14] Hauerwas, S. (1986). Suffering Presence: Theological Reflections on Medicine, the Mentally Handicapped, and the Church. Notre Dame, Indiana: University of Notre Dame Press, pp. 63-83.
[15] Herbert, M. Preimplantation Genetic Diagnosis and Ethics, p. 8.
[16] Owen, Mary Jane, Calming the Fear and Frenzy
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John Kleinsman teaches Moral Theology at the Wellington Catholic Education Centre and is also a part time researcher for The Nathaniel centre
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2003