Reflecting on Prenatal Detecting
John Kleinsman
Issue 22, August 2007
"There is an infinite difference between parents who want a child only if it comes into the world satisfying specific criteria for quality or gender, and parents welcoming the child they beget in a spirit of humility and with unconditional love, which they understand as the primary characteristic of the parent-child bond." (Margaret Somerville, "Biotechnology and the Human Spirit", p. 7)
Introduction
The advent of prenatal testing has changed women's experience of pregnancy and, along with other developments in reproductive technologies, has led us – individually and societally – into new emotional and ethical territory.
Prior to the days of prenatal testing parents were handed a baby at birth and looked to see if it was 'complete' (de Crespigny et al, 1998, p. 3). Nowadays, prenatal testing has brought this emotionally charged moment forward to a time when pregnancy termination remains an option for those who choose it. That is why Barbara Katz Rothman is able to speak of the "tentative pregnancy", a state of affairs that is a result of the technology creating a new level of "separation" between the mother and baby. Christine Morton speaks of a "transition from seeing pregnancy as a normal, natural event to one that is potentially abnormal and pathological" (2006, p. 1). Combined with the increased use of IVF (a practice which has reinforced the idea that babies are separate beings that are "planted" within a woman), prenatal testing has contributed to what Stanley Hauerwas refers to as the increased alienation of pre-nascent life.
In this article, after offering a short critique of the rights based approach to prenatal testing, I will suggest several alternative lines of questioning that will enrich our reflections on this important topic.
The Burden and Limitations of Choice
When prenatal testing was first used in the 1970's, it was argued that its use would remove the anxiety of mothers (Macer, 1998, p. 2). Almost forty years later this practice is now a routine part of pregnancy care. Yet there is an increasing sense, particularly among women, that the dilemmas generated by prenatal testing leave them and their partners feeling confused, in pain and distressed; burdened by information that calls for far-reaching decisions at a time of great vulnerability. Rayna Rapp (2000, p. 3) describes the impact of prenatal testing from a maternal perspective: "Women are situated on the research frontier of the expanding capacity for prenatal genetic diagnosis, forced to judge the quality of their own foetuses, making concrete and embodied decisions about the standards of entry into the human community." Katz Rothman concludes: "Both [IVF and prenatal testing] have come in the guise of offering choice, but neither has had liberating consequences" (1992, S13).
In 1981 Pope John Paul II wrote that scientific and technical progress not only offers the hope of creating a new and better humanity, but also causes ever greater anxiety regarding the future (Familiaris Consortio, n. 30). Prenatal testing clearly illustrates this paradox. The "anxiety" associated with prenatal testing should give us pause to seriously question the desirability and consequences of universal prenatal screening programmes in New Zealand. While some make the case that such programmes are a continuation of current practices, simply "more of the same", the combination of testing techniques with new discoveries in genetic knowledge means that the predictive powers of screening and diagnostic tests are now greater than ever. Consequently, the impact of such testing is also greater than ever. Failure to pause for ethical reflection will further compound the current reality in which ethical deliberations lag behind the developments of medical science.
Michael Sandel (2007, pp. 9-10) has noted that:
When science moves faster than moral understanding ... men and women struggle to articulate their unease. In liberal societies, they reach first for the language of autonomy, fairness, and individual rights. But this part of our moral vocabulary does not equip us to address the hardest questions ... questions largely lost from view in the modern world.
Inevitably, there are a number of other factors at work that predispose couples in the 21st Century to treat the dilemmas surrounding pregnancy and reproduction as private matters. These include the controversial and highly divisive nature of abortion and the predisposition of Western society towards individualism.
It is of concern that the immediate response of many "Christians" to the dilemmas raised by reproductive technologies reflects an individualistic, rights based approach to decision making. Philippa Taylor (2006), Associate Director of the Centre for Bioethics and Public Policy, comments that she was "taken aback" by the replies of a group of "bright students, all Christians," to the question of sex selection for social reasons. "What was striking ... was that, in a situation where a classic bioethics issue has not been well thought through, the immediate response was an individualistic, rights-based response. Hence their support for sex selection."
Taylor speculates that this viewpoint is very much the product of society today and, presumably, the grounding students are receiving in their universities and schools. "We certainly have a challenge on our hands if young Christians, let alone wider society, cannot think beyond this liberal, individual rights and choice approach, ignoring the rights of the child and other inter-generational issues." "Choice and control are to be valued but not limitlessly and not as decisive moral panaceas. Choice is not the universal moral solvent, dissolving all moral dilemmas" (Murray, 2002, p. 41).
Within New Zealand, the language of autonomy, fairness and individual rights is readily apparent in debates about prenatal testing. It is usually framed in terms of the need to uphold procreative choice for individuals, evidenced by such comments as: 'The State has no place in person's private bedrooms'. These sorts of statements highlight the challenge we face if we are to identify and address the hard questions that have been largely lost from view.
The Influence of Technology
Inevitably, the increased power, availability and routinisation of prenatal testing will contribute to the further medicalisation of pregnancy and birth. At one level this notion refers to the increased toleration of the use of medical technology in the process of human reproduction. At another level it also refers to the way in which women come to see it as a duty to expose themselves to the gaze and care of physicians for the entire process of pregnancy, childbirth and child rearing (see Lindemann, 2007). Christine Morton (2006, p. 1) notes that while prenatal testing is a logical outgrowth of the medicalisation of pregnancy, it has shifted the focus of the medical gaze from the woman to the fetus. With the advent of IVF and Preimplantation Genetic Diagnosis the medicalisation of pregnancy has been further extended to include human conception.
In the face of what Sandel (above) has termed a sense of moral unease, it is ironic that there is such a strong drive in Western societies towards the increasing use of human reproductive technology. What is it that is driving this willingness to welcome more and more the intrusion of technology into the transmission of human life?
While it is readily accepted that there is a place for the use of reproductive technology, its benefits come with a certain cost – emotionally as well as physically. A key issue is how to determine when the use of technology is warranted (for example as a means of overcoming infertility) and at what point its use becomes unwarranted. The idea that we should not do everything that we are technologically capable of doing is a lesson that we have been slow to learn regarding care at the end of life. There is much to be learnt from recent debates about what it means to "die with dignity". Along similar lines we now need to ask and reflect on what it means to be "born with dignity" or, more pertinently in light of the development of IVF, what it means to be conceived with dignity.
John Naisbitt (1999, p. 1) argues that technology is the new "story" or narrative that defines our culture; we are "intoxicated" by technology and seduced by its promises, believing our solutions to be only a purchase away. Margaret Somerville (2007) has suggested that our willingness to embrace technology is at least partly related to the loss of a sense of the mystery of life. According to Somerville, when we lose sight of the mystery of life we tend instead to see all things as problems requiring a technical solution. The use of prenatal birth testing would seem to be a clear case in point. The tragic reality is that in cases where a genetic abnormality (such as Down syndrome) is detected, more than 90% of couples choose to have an abortion. In the absence of a technological "cure" for the particular condition, abortion is seen by most as the obvious 'technical solution'. The message is clear. Genetic abnormalities are perceived as a "problem" that one way or another need to be – and can be – resolved by the use of technology. The standard for entry into the human community is tied to a technological paradigm, one that is without question shaped by the predominance of what is commonly referred to as a "deficit" (and very deficient) model of disability.
In order to develop and maintain a strong appreciation of the 'mystery' of life we must move beyond the technological paradigm. At the same time, a proper sense of the mystery of life will enable us to see the inadequacy of the technological paradigm so that we can more easily let go of it. Most importantly, it provides us with a paradigm or narrative that enables us to live with the paradoxes and challenges of pain and suffering without having to find a technological escape route. This does not mean that we do not support the efforts of medical research to overcome the pain and suffering associated with sickness, disease and disability. The key difference is that acceptance into the human community comes first and is independent of being able to apply a technological solution.
Stanley Hauerwas expands on the relationship between suffering and technology in his book Truthfulness and Tragedy:
A truthful narrative is one that gives us the means to accept the tragic without succumbing to self deceiving explanations ... tragedy can be seen not to be just unfortunate events but a necessary characteristic of our lives ... to try to use medicine as a means to hide or eradicate the tragic from our lives only makes us less able to deal truthfully with the limits of our existence.
Hauerwas' insight provides a valuable lens through which to evaluate the use of prenatal testing: a preoccupation with the avoidance of pain and suffering could well be symptomatic of an inability and/or unwillingness to face some of the deeper existential questions about life and death; symptomatic of a failure to accept the finitude of our existence and our rightful place in the created order. This insight generates further hard questions; to what extent are we are using prenatal technology as a way of hiding or eradicating the tragic in our lives and as a way of avoiding the limits of human existence? To what extent is our willingness to embrace this technology evidence of an unhealthy desire to take complete control over human destiny? Or, in Michael Sandel's words, do we see ourselves as participants in a drama larger than ourselves, or as authors of the drama itself (2005, p. 115), a question which takes us to the verge of theology.
The answer to these questions is not to be found in a simple return to the past based upon the philosophy of the Luddites. Medical technology, of which prenatal testing is a part, is part of the reality of healthcare. The challenge is to integrate our use of technology in such a way that it enhances human life within particular parameters that allow a place for limits and tragedy. At times this will mean having the courage and integrity to say 'NO' to its use.
If as Catholic-Christians we are to contribute meaningfully to the broader discussion about the place of medical technologies such as prenatal testing, we will need to move beyond our own preferred language and be part of the broader dialogue; a dialogue wherein the assumptions that make us reach "first for the language of autonomy, fairness, and individual rights" (Sandel, 2007, p. 9) are exposed; a dialogue within which we remain faithful to the Gospel story that defines us as Christians. In particular, it will be important to reflect on the particular ways in which the Christian narrative, centred as it is on the suffering, death and resurrection of Jesus Christ, shapes our understanding of the tragic dimensions of human existence. The picture of Jesus suffering on the cross is surely the reminder Christians need that living authentically involves an acceptance of suffering as well as an acceptance of the limits of our existence.
Recognising the Unwritten Rules
Parents who receive the news that their child has a "fetal anomaly" consistently describe the moral dilemma they face as involving tremendous suffering and regret whatever choice they make. Judith McCoyd (2007, p. 44) poignantly describes it as one of the unwritten rules of American society that 'good' mothers do not have 'bad' babies. "This means that women who have children with disabilities, especially those diagnosed prior to birth, are breaking the rules by giving birth to those children."
It is readily accepted within New Zealand there is a strong societal bias towards the termination of pregnancies where a "fetal anomaly" has been detected. Even in 1994, at a time when prenatal testing was less prevalent than it is now, the New Zealand Public Commission noted that if the choice was available parents usually opted for termination when it was known in early pregnancy that their child had a severe birth disorder. More recently the Antenatal Down Syndrome Screening Advisory Group to the National Screening Unit noted in their Report that "although the aim [of any screening programme] may not be to decrease the incidence of Down syndrome, the effect of any screening programme would inevitably be to decrease the incidence of Down syndrome" (2007, p. 65, emphasis mine).
How do we as Catholics respond to these figures? It is not enough to simply state the Catholic position regarding the intrinsic dignity of all unborn life and the unconditional respect that follows from that belief. If we are to positively influence the culture in which we live we will need to understand the reasons for this bias. What are the assumptions that underpin it? What are the societal factors that are bearing upon couples who are contemplating having children? To what extent is this bias experienced as a pressure that effectively undermines personal choice? To what extent are couples' choices mirroring a negative image of disability? To what extent are couples' choices tied to a (real or perceived) lack of state funded support services? That is to say, we also need to take into account the various ways in which our context, the society in which we live, often makes it difficult for women to proceed with their pregnancies, especially when a baby is identified as being "less than perfect".
A number of commentators have described prenatal testing as eugenic in its outcomes, if not in its intentions. While others have disputed this on the basis that eugenics, by definition, involves state sponsored legislation, Ruth Hubbard (1998, p. 232) offers a different and useful perspective: "In this liberal and individualistic society, there may be no need for eugenic legislation. Physicians and scientists need merely to provide the techniques that make individual women, and parents, responsible for implementing the society's prejudices, so to speak, by choice" (quoted in Milligan, Towards humane technologies: Genetic screening and prenatal testing, p. 1). Tom Shakespeare (2006, p. 88) makes a similar point when he writes: "Even in the absence of explicitly eugenic intentions, eugenics may be an 'emergent property' arising out of thousands of interactions, implicit expectations, subtle influences and restricted choices in which parents find themselves." In other words, when assessing the rights of couples to make their own reproductive decisions, we need to take full account of the way in which an accumulation of individual choices can have consequences that go far beyond the intentions of the individuals responsible for the choices. The difficulty is, as John Habgood (2003) notes, that "Medicine, as currently practised, is not well adapted to assess the long-term social impact of new forms of intervention."
Hubbard and Shakespeare highlight the fact that it is not simply a matter of providing more or better choices or extending options when it comes to the question of providing services for prenatal testing. We need also to take into account the manner in which we make choices available, the extent to which the choices arise from or are informed by stereotypes and prejudices and the way in which the offering of particular choices will underscore and reinforce particular prejudices (see Bridle, 2005, p. 3). In the case of prenatal testing, the (negative) prejudices about disability – which saturate our culture – are by and large ignored because they are largely unconscious and unexamined (Bridle, 2005, p. 3).
A focus on the context in which couples are making their decisions necessarily excludes simplistic judgements about the moral character of the couples involved. This, in turn, means that an adequate Catholic response to the appropriate use of prenatal testing and other reproductive technologies must move beyond a simple appeal to personal morality. These days a much more nuanced response is called for in order to help couples recognise and address the complexity of the decisions they are called to make, as well as the confounding factors. Such factors include the personal "costs" that caregivers carry as part of supporting a child with a chronic illness or disability; costs relating to the impact on personal well-being, employment, career, earning and saving, relationships, recreation and retirement. There is also the question of living and dealing with the personal grief that happens when expectations people might have originally had about their offspring and their future are suddenly shattered.
A focus on the personal costs associated with having a child with a disability or chronic illness highlights the responsibility of the wider community to offer adequate resources and support. Sadly, these services are all too often lacking, difficult to obtain or constrained by issues of institutional inertia. Not only does this leave parents to battle the issues alone, but it also reinforces the impoverished notion that responsibility for those who are most vulnerable ultimately lies solely with individual parents/families. While a sound reading of the Gospels easily dispels this notion, the fact remains that all too often many Catholic-Christians remain content to promote the sanctity of human life in 'word' but give little thought as to how they might better support people with disabilities and their families to live full and satisfying lives.
Conclusion
As well as generating specific knowledge about a woman's unborn child, the technology associated with prenatal testing is redefining the knowledge frameworks that shape our attitudes to, and social experiences of, pregnancy and childbirth. The prospect of more powerful methods of prenatal testing becoming a routine part of pregnancy care presents us with an urgent and challenging task; the need to identify and then offer a critique of the assumptions and realities around conception, pregnancy, prenatal testing and birth that are all too often masked by the language of choice. The use of the rights based framework, which highlights protection of choice as the key ethical issue, remains by itself problematic and wanting for a number of reasons, including its inability to take account of the cumulative effect of people's individual decisions.
From a Catholic-Christian ethical perspective, the quest for information and knowledge should occur within certain parameters shaped by the scriptures and the Catholic moral tradition. The purpose of knowledge is to serve the good, and it is the good that should act as a limit on the pursuit of knowledge and the use of technology. When couples are faced with the opportunity of being given detailed information about their fetus, a focusing question might be: 'What do we really need to know to help us choose the good?' In answering this question we would do well to reflect on some of the deeper existential questions that surround the ethical issues generated by the advent of prenatal testing; above all whether or not we see ourselves as participants in a drama larger than ourselves, or as authors of the drama itself.
In New Zealand, the regulation and legislation of bioethical and biotechnological issues reflects a greater awareness of, and openness to, the need to look at questions from a cultural and spiritual perspective as well as from an ethical perspective. This puts us in a unique position because it provides us with a mandate to highlight some of the questions that have, in Sandel's words, been lost from view; questions that naturally originate within the different perspectives that theologians (as well as philosophers and social anthropologists) bring to the debate. In particular, the shape of legislation in New Zealand offers a real opportunity to challenge the predominance of the rights based paradigm in debates about prenatal testing, and to supplement its valid but limited perspective with a richer and more human one that incorporates the richness and wisdom of our cultural and spiritual heritages.
A full list of references is available from The Nathaniel Centre on request.
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John Kleinsman is a Doctoral Student at The Nathaniel Centre
© The Nathaniel Centre 2007