Keywords

These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

As I near the end of writing this book, I also near the end of my first pregnancy. The experience of pregnancy has been instructive to say the very least, and no doubt informs the preceding pages in ways of which even I am not aware. What has perhaps been most instructive has been the tension – sometimes implicit, often explicit – between my own embodied experience of pregnancy on the one hand, and the medical apparatuses of control that attend pregnancy on the other. Or – since this risks overstating the opposition between the individual’s experience of embodiment and social-institutional arrangements – what has been most instructive has been the routine interactions in pregnancy with the medical apparatuses as they interpret and shape my own embodied experience. As Annemarie Mol has argued,Footnote 1 bodies and medical institutions come together in various, more or less fractious, ways to provide a unified picture of a condition, in this case, of pregnancy.

A pregnant woman must run the gauntlet of a multitude of tests and measurements of risk factors in the course of 9 months of pregnancy. This often begins with a pregnancy test, purchased at any pharmacy or supermarket, the results of which will be confirmed by another pregnancy test at a medical clinic if it indicates a positive result. From then on, pregnancy involves an ongoing series of routine blood tests, urine tests and vaginal swabs. It typically also involves a first and second trimester ultrasound scan, which is supplemented throughout the pregnancy with routine Doppler tests of foetal heart rate, often each month or less. In addition, a woman may be required to have vaginal ultrasounds, cardiotocography, amniocentesis and chorionic villus sampling. She may be advised to take supplements for vitamin deficiencies, and her weight will be routinely noted as will her blood pressure. This is to say nothing of the additional interventions that may be required to address infertility or other reproductive hindrances, nor the various treatments that may be required for complications that arise throughout a pregnancy. All of these tests and measurements are geared toward establishing that her body and the foetus she carries fall within, and remain within, normal parameters – or, at the very least, within a manageable variation from normal parameters.

At the same time as negotiating these tests, the normal parameters of her body as she experiences them are being transformed from the inside. Her body is quite literally in flux as the pregnancy develops and transforms the very structure of her body, reshaping her breasts and belly, widening her hips, enlarging her feet. Her relationship to her own body is not immune to this transformation either, for her body is no longer simply hers (supposing for a moment that it ever was). Instead, her womb has become the home of another, and this presence becomes increasingly insistent and hard to ignore as the pregnancy progresses. Along with this presence, her sense of responsibility may also transform. What began as an abstract responsibility for decisions taken or not taken becomes increasingly concretised and focused upon the bodily imperatives that the ever-present baby confronts her with.

It is in the context of this multifaceted experience of transformation that I first read of the case of selective termination on the basis of the foetus missing a hand that I mentioned in the Introduction of this book. Reading the case notes at around the time of my second ultrasound scan, which tests for anomalies in foetal morphology, I was struck by the likely emotional difficulty of making such a decision to terminate after having carried a foetus for some months. In my experience, ultrasound testing produces at least as much anxiety as it allays. It is easy to forget that the anticipation of the test and the apparent legitimacy that it bestows upon a pregnancy – shifting it from the realm of the ‘tentative’ to the ‘real’Footnote 2 – is an experience unknown to the generation of mothers previous to me. My mother would not have had the option of terminating a pregnancy on the basis of foetal abnormality, since at that time any such abnormality was only revealed at birth. I do not mean to valorise this state of relative ignorance, though it may well have had some benefits, as well as disadvantages. My point is simply that new technologies produce new desires and choices, and in doing that, they also produce new relationships and responsibilities.

Given the context in which I was reading these case notes, it is perhaps not surprising that I found the case troubling, but I do not believe that I did so only because of emotional identification. In Chapter-Two of this book, I examined recent arguments about genetic interventions in reproduction, especially in terms of their approaches to the concept of the normal. I argued for a view that allows a nuanced understanding of the concept that sees it primarily as a description of a relationship between a being and the world in which it lives (or an organism and its environment). This means that normality is not a stable characteristic or set of functions, but a way of assessing the capacities of a being to meet the challenges that it faces in its world. One advantage of this approach is that it allows for a differentiation between the anomalous as the statistically infrequent, and the abnormal. On this view, missing a hand does not on the face of it constitute a pathological abnormality, since its impact on the flourishing of an individual within their world may be negligible. Instead, it is the interaction of this body with regulatory social norms that makes missing a hand appear as pathological, and the body that lacks in this way appear as an existential impossibility. I suggested that bioethics as a discourse must attend more seriously to the interaction of biological and social norms in the definition and identification of the normal body.

One significant implication of this is that reproductive decisions are never simply decisions of unbounded choice. They are always made in the context of the intersections of bodies and regulatory apparatuses, and are ineluctably set through with norms. But this does not mean that there are no choices to be made, or that reproduction is simply a matter of imposed control and false choice. Reproductive decisions undoubtedly involve deeply held values and beliefs about the good life, and they have a profound effect on the possibilities for living that are available to us. But they do not simply express these values; instead, as I argued in Chapter 3, the practice of reproductive liberty is part of our constitution of ourselves as ethical subjects. In deciding to reproduce or not, or to reproduce in this way and not that, we literally make ourselves who we are and who we can be. Commentators on the principle of reproductive autonomy often argue that it should take presumptive priority in controversies about reproductive technologies and practices. However, they also typically understand reproductive autonomy as a negative freedom, that is, as a matter of freedom from external constraints. I argued that reproductive autonomy is more adequately understood as a positive freedom, and I drew on the work of Michel Foucault on ethics as a practice of the self to make this argument. This approach responds to the intuition that reproduction is of deep significance in people’s lives – it is not simply a matter of more or less free choices, but of a practice of liberty that fundamentally shapes our sense of ourselves and enlivens our deeply held values. This is also the case when one chooses not to reproduce. This approach also brings out the way in which new technologies contribute to a problematisation of reproductive liberty, of which contemporary moral debates are a part.

In Chapter 4, I explored one example of such a problematisation, which especially highlights the question of the limits of reproductive freedom. This is the controversial issue of the prerogative of parents to use reproductive technologies to select for or, more frequently, against characteristics that are typically considered disabilities. In the first half of that chapter, I considered responses to the case of Sharon Duchesneau and her partner Candy McCullough, who sought a sperm donor with a history of family deafness to increase the likelihood that their child would be born deaf. I did so particularly with an eye to the ways in which these responses drew upon John Stuart Mill’s idea of the principle of harm, as well as Derek Parfit’s formulation of the non-identity problem. I argued that commentators such as John Harris, Julian Savulescu and Jonathon Glover construe disability as a problem, in the sense that it is negatively valued and in the sense that it is used to circumscribe the limits of reproductive freedom. In the second half of the fourth chapter, I reversed directions to consider the expressivist critique of prenatal testing, which argues that, insofar as they are used to select against disabilities, such technologies express discriminatory attitudes toward people with disabilities. I defended the expressivist critique, showing that there are substantial – and, in bioethics, underutilised – theoretical resources available to it that would allow a plausible critique of prenatal testing. One of these resources is the philosophy of phenomenology. As Jackie Leach Scully has argued, the value of phenomenological accounts of disabled embodiment is that they may extend moral understanding and the capacity to imagine the lives of others.

In Chapter 5 and Chapter 6, I addressed two problems raised in the course of the discussion of disability – the social appearance of the body and the ethical significance of our relationships with others. In Chapter 5, I addressed the second of these issues through the concept of singularity, especially as philosophers such as Adriana Cavarero and Jean-Luc Nancy have theorised it. They place emphasis on the question, ‘who are you?’ as a formula to encapsulate the constitutively relational basis of human uniqueness. They distinguish between the uniqueness of who someone is, and the determinate characteristics of what someone is. Applying this to ‘PGD’, I claimed that the predetermination of the qualities of the newborn indicates a transformation in our mode of relating, which has the effect of forestalling or eroding the immediate recognition of who they are. The newborn is born for what they are, and not for the unexpected appearance of who they are, the implication being that this evinces a failure to treat the other as other. But I also suggested that insofar as technologies such as PGD erode a certain kind of ethical self-understanding, as Jürgen Habermas has argued, they also open possibilities for new ways of thinking about ourselves as ethical subjects. Thus, I began to bring out the connections between technology and subjectivity.

In Chapter 6, I extended on this and took up the problem of the social appearance of the body, especially in regards to the routine use of ultrasound in obstetrics and its impacts on intuitions about the moral status of the foetus. Ultrasound plays a significant role in the circulation and realisation of norms in reproduction by establishing and shaping embodiment, and consequently, ethical and social relationships. Ultrasound helps to create the norms against which foetal bodies are assessed and calibrated, while also producing the desire for a ‘normal, healthy’ baby. Thus, the technology produces a desire for the norm, and in that, it establishes its own legitimacy and solidifies its role as a technology of normation. Moreover, it gives and takes moral status in its normation of the foetus. In this chapter, I argued that ultrasound images impact upon intuitions about the ethical status of the foetus because of the way they work on and through the sympathetic imagination. Ultrasound ‘frames’ what it purports to represent, and this framing contributes to the social production and distribution of sympathies. In this, it provides an example of the ways in which reproductive technologies very actively contribute to what will appear as a viable life or bodily form within the social sphere. These, it seems to me, are the issues most at stake in the case of the foetus missing a hand.

One characteristic of this book – for some undoubtedly its weakness, for others its strength – is that I do not make arguments about what people should or should not do in relation to reproduction. My interest lies elsewhere, namely in the ways that our current discourses and ways of thinking are shaping the possibilities for living. As I have argued in several ways throughout, norms constrain the imaginative possibilities for forms of bodily life in ways that preclude some from existence itself. Norms shape the very space of appearance, simultaneously constituting and masking the conditions under which decisions to exclude or allow forms of bodily life are rendered intelligible. Fortunately, heavy burden as the process of ethical self-constitution may appear to be, it also means that we carry within ourselves the possibility of making ourselves differently as ethical subjects. An ethics of the self makes us constitutively open to transformation, thereby introducing an alterity into our selves that may allow us to respond to the unbidden alterity of the other with greater sensitivity and generosity. This opens hope for the futures of reproduction and of responsibility. Finally, then, there is no single future of reproduction. There is instead an ongoing, agonistic negotiation of a multiplicity of possible futures; this is how it should be.

Just as there are different futures available for reproduction, I also hope that this is true for bioethics. Paul Rabinow has argued that mainstream bioethics as it is practised today is a transnational apparatus for regulating medical practice, such that the ethical is now little more than the ‘main mode of regulation’.Footnote 3 Further, he suggests that this regulation operates at the level of living beings, meaning that bioethics is a node within the operation of biopower and the management of life that it entails. I hope that I have demonstrated throughout this book that bioethics can be more, or at least something other, than a handmaiden of the state and bioscientific and medical apparatuses. In turning to a sense of ethics as ethos, which entails a practice of self-formation constitutively open to alterity, bioethics as a critical discourse is fostered. This turn, I hope, contributes to a different bioethics that is not about regulating life, but about allowing possibilities for living to flourish.