Ruth P. Fitzgerald Department of Anthropology and Archaeology University of Otago (E-mail: [email protected]) Michael Legge Department of Biochemistry University of Otago Julie Park Anthropology, University of Auckland

Choice, Rights, and Virtue: Prenatal Testing and Styles of Moral Reasoning in Aotearoa/New Zealand Using a Foucauldian biopower analytic, this article combines insights from several ethnographic research projects around the moral reasoning styles underpinning debates over selective reproductive technologies in Aotearoa/New Zealand. We show that divergent or shared public, private, state, individual, and community moral reasoning styles become highly politicized truth discourses that have the potential to, and at times do, affect one another, modifying a dominant, statesupported, principal-based bioethics framework. The styles of moral reasoning that we identify pivot on an aspirational cultural ideal of the provision of choice to citizens, which is taken as an appropriate position from which to regulate selective reproductive technologies. [bio-politics, moral reasoning, New Zealand, genetic testing, choice]

Introduction In March 2013, a startling press release from a New Zealand–based disability support group, Saving Downs, called for a local bioethics professor to “resign following his discriminatory paper on Down Syndrome.” The article, although couched in exclusionary language, proved to be a fairly standard bioethics assessment of the issues surrounding early first trimester screening for Down syndrome (Cole and Jones 2013). It argued for the need for autonomous decision-making. However, the vehemence with which Saving Downs expressed its public views (via a campaign managed from a Facebook page that alleged collusion in genocide) dismayed local academics, and the matter quickly escalated into national and acrimonious media coverage. MEDICAL ANTHROPOLOGY QUARTERLY, Vol. 29, Issue 3, pp. 400–417, ISSN 0745C 2015 by the American Anthropological Association. All rights 5194, online ISSN 1548-1387.  reserved. DOI: 10.1111/maq.12217

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This article responds to the question: Why had the authority of bioethical arguments been unable to quell the concerns raised by Saving Downs? We reject the obvious explanations that filled the university at the time—that the spokespeople for Saving Downs did not understand ethical argument or that the group was a poorly disguised front for a right to life group and thus insignificant because of its extremist views. Instead, by using a Foucauldian biopower analytic (Foucault 1978:138–145), this article combines insights from several research projects around the moral reasoning styles underpinning debates over selective reproductive technologies in Aotearoa/New Zealand to explain the confrontation as an unusually public display of the bio-politics of the regulation of genetic testing in which moral reasoning styles become highly politicized truth discourses. We use bio-politics in the Foucauldian sense as the “strategies and contestations over problematizations of . . . human vitality . . . forms of knowledge, regimes of authority . . . and [desirable, legitimate and efficacious] practices of interventions” (Rabinow and Rose 2006:197). Discursive claims to the “truth” in moral reasoning on this topic have been dominated by a state-level discourse embedded in the ethical language of principalism (Beauchamp and Childress 1979). Principalism favors consideration of autonomy, beneficence, non-maleficence, and justice in assessing the ethical harms and benefits of medical interventions. The lines of force through which the state expresses this discourse are the two statutory reproductive ethical review committees: ACART (Advisory Committee on Assisted Reproductive Technology) and ECART (Ethics Committee on Assisted Reproductive Technology), which deliberate on difficult ethical matters, and the national health care providers, who are trained to practice within the principalist ethical approach. The uncharacteristic failure of authority of principalist arguments to quell the concerns raised by Saving Downs also reveals a simultaneous anatomo-politics enacted by the members of groups both supporting and opposing testing through highly politicized discourses of moral reasoning different than that of the state. We discuss two examples of these struggles—the New Zealand Organisation of Rare Disorders (NZORD), which supports selective testing technologies, and the previously mentioned group Saving Downs, which mostly rejects them. The different discourses of moral reasoning mobilized by these two groups, we will argue, are virtue ethics and social justice claims of citizenship respectively. Unlike most ethnographic studies of the politics of such testing that analyze new and old eugenic state practices or nationalist cosmologies (Gammeltoft and Wahlberg 2014), we focus specifically on moral reasoning as what Foucault terms the “fracturing line of force” (Senellart 2007:3) between citizens and the state. Thus, we explore three arenas for the production of discourses of moral reasoning (NZORD, Saving Downs, and the New Zealand state via its national parliamentary debates and ethical regulatory committees’ decisions). This bio-politics analytic shows how: (1) the state’s regulatory apparatus for the governance of testing affects and is affected by its citizens’ moral reasoning processes; (2) this then turns the private world of Rapp’s moral pioneer into a far more public decision-making forum with vociferous public commentary and debate on the goodness of one’s final actions; which then, in turn (3) creates a remarkable

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dissonance between public and private reasoning strategies within the various group memberships contributing to these politicized debates.

Moral Pioneering in a Territorialized Landscape According to Rapp (2000:306), moral pioneering occurred when women were forced to “judge the quality of their own fetuses, making concrete and embodied decisions about the standards for entry into human society” in a mostly private process. Fifteen years later, testing and screening technologies have proliferated; public debates now include disability perspectives on such testing; and governments have produced such a variety of legislative ethical frameworks that a new industry of reproductive travel (Pennings 2002) has been created to cater for those with the opportunity or means to access reprogenic services unavailable within the ethical framework of their home countries. Despite this emerging diversity of ethical regulatory approaches at the level of the nation state, only a handful of ethnographic studies have explored how these individual or intra-familial discourses of moral reasoning respond to, reinforce or intersect with robust state-level ethical discourses on the appropriate uses of these technologies—what Rabinow and Rose (2006:203) refer to as the “bioethical complex.” One recent exception is the work of Meskus (2012), who takes a genealogical approach to the study of the ethical governance of prenatal testing in Finland, arguing that the state has shifted from a professional centered discourse based on principalist ethics to a “personalised ethics,” in which women debate with peers (rather than contemplate alone) the framing of an appropriate response to their situation. Instead of changing its discursive strategies, the state may also retreat from regulating ´ testing, as can be observed in the Icelandic study by Gottfreðsdottir and Arnason ´ (2011) of decision-making around prenatal screening. These authors show participants receiving little time for moral reflection or autonomous decision-making in their clinical consultations and little public media discussion of the ethical issues around testing. They also note that when the Icelandic state withdrew funding for the test (forcing people to access a private clinic), the number of births with Down syndrome dropped to zero. Thus, a zone of exception was created (through avoidance) in which potential citizens were “disallowed” life. Another (and different) reaction between the state and citizens’ moral reasoning processes is discussed in the longitudinal Paris-based study by Mirlesse et al. (2011), which finds that as the amount of information legally required to be made available to women surrounding the status of their pregnancy increased, the women shifted from autonomous decision-making into a more dialogically constructed outcome. Apart from legislation and policy development, the state also operates discursively through the practices of designated experts such as counselors and clinicians. Many studies generalize these professional discourses into a dominant discourse of choice and non-directiveness interfacing with a minor discourse of care ethics (Gammeltoft and Wahlberg 2014). However as Rabinow and Rose (2006:199) note, the concept of biopower (i.e., the combination of bio-politics and anatomopolitics) is “not transhistorical or metaphoric, but precisely grounded in historical, or genealogical, analysis”; nor does biopower serve “a single power bloc.” We

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suggest that there is much to be gained from finer grained studies of specific instances of the apparent dominance of such professional discourses to reveal their contested internal logics. For example, the clinical environment of “information sharing” analyzed in Pilnick and Zayts’s (2012) interactional study of Hong Kong– based women’s experience demonstrates varying degrees of manufactured consent to testing being created by doctors in conversation with patients relative to the doctor’s social assessments of their patients’ context. The state’s experts can also draw on cosmologies of nation-statehood to underline the discursive truths of their approaches to moral reasoning. Examples of the different discursive constructions of the most desirable or legitimate moral reasoning around prenatal testing are revealed in Hashiloni-Dolev and Weiner’s (2008) comparative study of German and Israeli genetic counselors and their conflicting, nationalized definitions of fetal selfhood and Ivry’s (2006) study of the culturally specific, historically contingent basis for secrecy over prenatal diagnosis in Japan. Together, these studies suggest a possible extension of the trope of moral pioneering to incorporate the fact that moral reasoning operates now within a glocalized landscape that is at once both easier to access and more publicly discussed than in the preceding century. The moral frontier is now also highly territorialized by variable national screening programs, proliferating types of reprogenic testing technologies, and most importantly, reflexive commentary via the new and traditional media, support, and activist groups. In New Zealand, this territorialization creates a multitude of “new social collectivities” (Rabinow and Rose 2006:197), in which moral pioneers can both freely communicate and debate their decision-making while also being held accountable for it (a change noted also by Meskus [2012] in Finland). The support groups explored in a later section of this article provide examples of these new social collectivities and the opportunities they offer for extended self work on one’s moral reasoning and some examples in which these groups have impressed their own moral reasoning positions onto the dominant state discourse of principalism within New Zealand’s bioethical complex.

An Analytics of Biopower Rabinow and Rose (2006:204) cite reproduction as one of the biopolitical lines of force in contemporary societies; in arguing for further empirical studies of these lines of force, they outline three arenas necessarily associated with the operation of biopower. These are: its associated truth discourses and competent authorities who speak it; interventional strategies on various communities and populations; and modes of subjectification for individuals (Rabinow and Rose 2003:197). Figure 1 sets out our ongoing work in the strategic sampling of this field. The specific sites from which we draw data for this article have been marked in bold. We contend that the productive force associated with the field of biopower creates truth discourses about the category of the disabled citizen. Across one dimension (the horizontal axis of Figure 1), New Zealand publics hold an array of opinions about the nature and meaning of disability with regard to the specific issue of genetic testing that may vary from highly medicalized models (such as NZORD) to social models of disability that view society itself as disabling (exemplified by Saving Downs). However, these views and their associated moral reasoning

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KEY: Data already collected

Data in process of being collected

Data still to be collected

PRIVATE Interviews with 60 women from South Island on reasons for pregnancy terminations representing the full spectrum of positions on disability Interviews with 30 New Zealand men on reasons for pregnancy terminations representing the full spectrum of positions on disability

(Rhett's Syndrome)

Family Case Study (1) Genetic Linked Deafness

SOCIAL MODEL

Parent to Parent

Family Case Study (3) Genetic Linked Deafness

Discursive Spectrum of

Interviews with Savingsdown Group

Organisational Study Family Study

Family Case Study (2) Genetic Linked Deafness

Interviews with National Bioethics Council (now disbanded)

Interviews with NZ Mormons on Genetics & Disability

Family Case Study (4) Genetic Linked Deafness

Family Case Study (5) Genetic Linked Deafness

Family Case Study ( Fragile X )

MEDICAL MODEL

the Meanings of Disability Communicative Spherfes

Family Case Study

Ethnographic Study of Embryologists

used or Ethical Comment

Ethnographic Study of Cytogeneticists

Ethnography Study with the NZ Muscular Dystrophy Community

Interviews with Bioethics Committees ( ACART & ECART )

Ethnographic Study of New Zealand Haemophilia Community

Interviews with New Zealand Organisation for Rare Disorders

Ethnographic Study of the Construction of Down Syndrome and Life with Down Syndrome Discourse Analysis of Submissions to Government on the HART Act Parliamentary Debates by Government on the HART Act

PUBLIC

Figure 1. Everyday Ethical Values of New Zealand Society on Reproduction, Genetics and Choice strategies vary with the social context of expression (view vertical axis) from private to public social fora. For example, the hemophilia community members respect different family decisions on testing by arguing “What’s right for the family is what’s right” (Park 2009:179). Other groups, such as the cytogeneticists and embryologists who both create (through karyotyping) and erase (through preimplantation genetic diagnosis [PGD]) geneticized and disabling identities, care deeply about the ethical consequences of their work but have no public platform to express this (Finlay et al. 2004; Fitzgerald et al 2013). Thus, our work recognizes that public figures have private lives, while members of community groups are also individuals, and that individual biographies can become a key symbol to organize discourses. The resulting discursive field of such reasoning is both complex and volatile. For example, NZORD resists the label of “medicalized” and regards itself as “a friend of medicine”; it also engages with many projects around the support of carers that would place it at the opposite end of the disability continuum—the social model. HFNZ (Haemophilia Foundation of New Zealand) has attempted a partnership relation with medicine, and both groups would regard the horizontal axis of the sampling diagram as more of a continuum of practical hope versus unrealistic pie in the sky dreams of a fair and inclusive world. Similar complexities exist around the framing of what we have termed the “social model” of disability (Shakespeare 1999).

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Methods Our first case study drawn from this larger field of ethnographic study is a discussion of biopower at the state level. To produce this analysis, data were collected from a public discourse analysis of the submissions for the relevant New Zealand Human Assisted Reproductive Technologies (HART) Act (2004) and parliamentary debates, a review of key New Zealand–based bioethical literature and secondary commentary, reflection based on confidential participant observation within the regulatory committees ACART/ECART for three years, an analysis of the published meeting minutes from these committees, a decade of clinical practice, and a decade of teaching within a medical school. For the second case study exploring the anatomo-politics of reprogenic testing among the citizenry (using NZORD and Saving Downs as examples), we use an ethnographic analysis, drawing on two field trips conducted in 2004 and 2005 resulting in extended interviews with 20 mothers and fathers of NZORD and subsequent observational data and informal discussion analyzed through narratives. Our analysis of the moral reasoning of the group Saving Downs draws on two years of fieldwork, nine formal interviews with individual members, and observations and media analysis of its Facebook pages, public seminars, and media appearances (Wardell et al. 2014).

Truth Discourses of Reprogenic Moral Reasoning Until the advent of Saving Downs, while New Zealanders may have varied in their personal views on the good in selective reproductive testing, the implications of such technologies were publicly discussed only within well-structured nodes of democratic discussion. In the past, this approach has included parliamentary submissions and debates (McLauchlan et al. 2010) regarding the 2004 HART Act, outputs and decisions from the ethical regulatory committees ACART and ECART, and associated committees (i.e., the National Screening Unit). Saving Downs’s attempt to exercise at a national level, a different ethical decisionmaking pathway over genetic testing based on citizenship rights (by alleging that the state’s initial provision of universal first trimester screening for fetal anomaly was an attempt at ethnic cleansing of the Downs community) shows, by its very newsworthiness, that it is a discourse that runs contrary to the established social order for ethical debate. As Lord (2013) has noted, such activism via an appeal to citizenship rights allows for a logical connection to the United Nations Convention on the Rights of Persons with Disabilities, which New Zealand has adopted and ratified. However, the prominence of principalist ethical reasoning has constrained the power of this rights-based discourse, despite the historic presence of a weaker citizens’ rights-based discourse within the state. For the most part, rights have not been a “sayable” or “thinkable” discourse for the ethical promotion of reproductive health for women, and we say this for two reasons. First, empirical research indicates that citizenship as a term is far less important in Aotearoa/New Zealand to ideas of identity than the terms “family” or “community” (Humpage 2008). Second, if we break apart citizenship rights analytically (Marshall 2009) into their constituent components of political, civil, and

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social rights (with the latter encompassing issues around health and reproduction), then, historically, it is the health and reproductive elements of citizenship that have most frequently been neglected locally. This began with the signing of the Treaty of Waitangi in 1840, marking the moment when the governance of reproductive decision-making formally shifted into the public sphere and into the colonizer’s language of rights and citizenship. The subsequent decimation of the indigenous Maori ¯ population until its more recent renaissance in the late 20th century indicates the duration and severity of the state’s inattention to indigenous rights of reproduction, despite Maoridom’s early and often-celebrated access to political citizenship. ¯ The poorer female Pakeh a¯ (white settlers) were also excluded from full repro¯ ductive citizenship rights during the 20th century. For example, during the New Zealand Inquiry into Abortion 1936–37 (Brookes 1981), committee members declined to provide the access to family planning services that public submissions and certain women’s groups had sought, suggesting that maintaining the illegality of such devices would provide a welcome opportunity for citizens to develop the virtue of “self-restraint.” In a similar mismatch between public and elite ethical opinions, the Royal Commission on the Contraception Abortion and Sterilisation Act delivered its findings in 1977 by suggesting a further tightening of the restrictions (Molloy 1996). This was the case even as approximately 3,000 citizens a year were being admitted to New Zealand hospitals as a result of botched abortions and a further 4,000 a year were traveling to Australia to make use of more liberal abortion laws there. The most recent infringement of reproductive rights is the scandal of National Women’s Hospital, in which inappropriate (lack of) treatment was administered to women with pre-invasive cervical cancer in a clandestine experiment (Coney 1988) in which women participated without their knowledge. For several, this lack of treatment resulted in their death. The resulting critical social agitation from the women’s health movement finally pressed New Zealand toward the creation of a Consumer’s Code of Rights in health care—although the charter and an ombudsmen still only retrospectively address the denial of these rights (Nie and Anderson 2003). Instead, we argue that it is deliberative principalist ethical approaches that have become the preferred language of the ethical governance of reproductive technologies in New Zealand. This relates directly to events at National Women’s Hospital, which is the key event that authorizes the truth of the principalist discourse in ethics for the state. In the subsequent government inquiry (Cartwright Report 1988), Judge Cartwright drew heavily on the existing work on ethical codes of practice, such as the Nuremburg Code, as well as expert advice delivered by two professors of bioethics, to make her influential recommendations for the subsequent regulation of clinical practice. The recommendations dealt with the issues of autonomy, informed consent, and inclusion of lay opinions on ethical boards of review. While Cartwright’s findings also buttressed patients’ rights as citizens, the simultaneous highly publicized media accounts of the abuses of such rights created a public sense of a moral vacuum in the administration of citizens’ social rights of health care. Paul (2000) agrees, noting the damage caused to public confidence in medicine because it was lay investigators (not doctors) who brought the scandal to media attention. Paterson (2010) argues that medicine responded as an institution to this dilemma by fully adopting the admonitions from Judge Cartwright, including

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the prioritizing of ethical reflection in contemporary medical curricula. Following this professional lead, principalist bioethics leached outward into paramedical training courses, and the general acceptance of the authority of this approach to arbitrate in moral dilemmas rather than pursue the social citizenship rights of reproductive citizenship became entrenched. The bioethicists Nie and Anderson (2003) also note the Cartwright Report’s impact in shaping New Zealand’s bioethics.

Accommodating and Resisting the Truth Discourse NZORD has been particularly successful in expressing a style of biological citizenship that engages effectively with this public deliberation model of principalist ethical argument. Its bureaucratic organizing structure, highly professional communications, involvement in ongoing research and policy development, and alliance with medicine allow it to pass the “onerous and complex conditions” that precede inclusion in the truth (Foucault 1972:223–224). For example, in our observation, its endorsement along with the Life Sciences Network and others, was crucial to ensuring a finding in favor of the availability of genetically modified medicines and related genetic testing techniques as an outcome of the New Zealand Royal Commission of Enquiry into Genetic Modification. NZORD continues to be a significant player in public discussions on genetic testing. Saving Downs via its appeal to citizenship rights has also begun to make its mark in the last two years. We presume that this changing relationship to the dominance of the principalist discourse has arisen through their invocation of supranational rather than national citizenship discourses. In addition to the previously discussed Facebook and media campaigns, they were also successful in a bid via the New Zealand Human Rights Commission to explore the bias in information on prenatal screening in literature and practice guidelines published through the office of the National Screening Unit. Saving Downs argued that this material was biased in favor of termination as the logical outcome of a positive testing result. The chair of the commission’s final deliberations agreed with the Saving Downs position and prenatal screening is no longer routinely offered, although information about the procedures is readily available for those who are interested. Furthermore, the content of prenatal screening information material has been significantly revised to include positive views of living with Down syndrome, including an image on the front cover of a happy young family that includes one child with Down syndrome (Wardell et al. 2014). These two very clear examples show how advocacy groups can press back against the state to both endorse and impede its practices. We turn now to the ethnographic case studies to focus specifically on the moral reasoning approaches they espouse in public and in private.

The Anatomo-politics of Moral Reasoning for NZORD Our second case study, the umbrella group NZORD, is an excellent example of the enactment of biological citizenship. The group represents an innovative and effective response to state-funded health care, which in Aotearoa/New Zealand is distributed regionally via a modified population-based formula. By joining together, they increase the political potency of their combined voices to overcome the disadvantage otherwise created by the rarity of their conditions.

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Most members have lived through the historical development of an array of testing techniques from the surgical biopsy of fetal tissue in utero, chorionic villus sampling, amniocentesis, through to PGD and prenatal and newborn screening. They have contributed to the development of a specific publicly expressed moral orientation that promotes the genetic testing of children and embryos authorized through appeals to women’s right to choose. In their contributions to deliberative ethics, this is the view that an external observer would note that they have offered (McLauchlan et al. 2010). It is also the view of NZORD as expressed to the researchers from other advocacy groups within the community who have assessed NZORD as being oppositional (to their own) public approach to understanding disability.

Disability and Rare Genetic Difference Despite this perceived unity of their views at an organizational level, in their own families, the relationship between NZORD members and the disability critiques of genetic testing was a more intricate mesh of involvement than any simple oppositional arrangement. Certainly, at various times in the texture of their lives, the weft of their deep engagement with biomedical science as hope for the “cure” of disability ran against the activist goals of disability workers to create a non-disabling social environment. However, there were also moments when the warp of living in the context of a chronic and disabling illness seemed to run closely parallel to the experience of disability. The following section discusses these commonalities and tension points drawing on Beatson (2004:42–44), who suggests that there are four dimensions of the concept of disability—social, medical, political, and identity aspects. These apparently clearly set demarcations became blurred for NZORD members as they slipped along the axis of personal to public group identity. In common with theorized disability experience was the degree and scale of accommodations and organizing strategies that families engaged in to manage the activities of living with children who are unwell. For instance, appointments would become confused, red tape was battled, and visits were planned with the precision of a military campaign in terms of ensuring food supplies, back up medications, and ease of access. One mother of a little girl remembered interacting frequently with government departments, a variety of therapists and social workers, doctors, and the respite caregiver: “We had a list of the names of about 30 or 40 different people that were all involved in [my daughter’s] care one way or the other and as I say it was a bit like managing a small company” on good days and on a bad day “an absolute nightmare.” The pressures of constant organizing often frayed the bonds of intimate partnerships and even those couples who could, for example, work from home, own a business, share the money earning and share looking after [the son] underwent such an organizational upheaval that they viewed their circumstances as having “been forced into that situation really.” Their thanks were reserved more for the serendipity of being qualified for jobs that allowed them this degree of flexibility. Another younger family without such options had traveled halfway around the world to return to their New Zealand extended family to help them with what would become a 24-hour care roster—husband and wife taking the daylight shift and grandfather

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working the night shift—to ease their eldest son’s cramps, change his clothing, and provide feeding and medications through a tube. The second line of strong resemblance between NZORD members’ stories and broader accounts of politicized expressions of disability was their shared focus on activism. One family, for example, contained a young adult who required many painful hours of bandaging every day on excruciatingly blistered skin. The parents initially managed all of his nursing between them when he was small, but after many years eventually tried to get some district nursing support to allow them two nights off nursing each week. To do this, they “made a huge fuss and it went on for a whole year,” but they eventually obtained a compromise from the local hospital, which agreed to provide nursing relief if the cost of the bandages did not come from the hospital’s budget. By then linking up with the Society of Dermatologists, the parents commenced the second stage of negotiations—this time with the national government—to allow bandages as a prescription item. The final result was a national exemption for people with this particular condition to be allowed prescription bandages from a special budgetary allocation for rare cases—a trailblazing piece of citizen activism. In this case, the stakes were as high as living or dying. As the parents noted: “If we hadn’t been able to do that, you know, we would have just gone under, [our child] wouldn’t have survived.” This shared valuing of activism caused some NZORD members to be more sympathetic to the oppositional position to genetic testing from certain disability groups. One person spoke admiringly of the legacy of past disability activism—things such as disabled parking and smoother wheelchair access for public buildings—which members of the public now took for granted. Energetic activism for full inclusion in society was seen by some as provocative but positive in its ability to increase everyone’s acceptance of diversity and for establishing the “right to be here”—a point that was relevant to their own children. There was also recognition that able-bodied society needed an activist to “go overboard” to get the very smallest of concessions. Points of strain, however, also emerged around the topic of disability—specifically the way in which some opponents of genetic testing seemed to incorporate being disabled into part of their personal identity. For example, one member recounted a surprising and somewhat bruising interaction with an academic who, after listening to his public talk on genetic testing, argued: “Don’t talk to me about preventing disability because if you do, it devalues me as a person!” and then wheeled away in high dudgeon. To underscore their different views on this topic, NZORD members would casually reveal during interviews elements of disability or impairment within their own life history—a brush with polio, for example, or a problem with impaired vision, carrier status for hemophilia, a fully expressed form of genetic difference such as albinism or possible genetic difference such as narcolepsy. NZORD members refused to define their personas only in reference to these things and rejected a meaning of disability that equaled personal identity, organizing politically instead around a shared biological identity of rare conditions. To clarify the moral authority that their position entailed, they often invoked a sliding scale of suffering to define degrees and meanings of disability. This could then be used to assess what might or might not be a moral authority for deciding whether to use testing. The director of NZORD saw it as a situation where the “hardline”

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disability activists (as he termed them) who opposed the further availability of selective reproductive testing, held ideas that were “100% right from their own perspective, because they are usually much more ABLE disabled people, but either they don’t know or are dismissive of the reality of the people who are really severely affected by these conditions.” These NZORD members also had an overriding sense of disability as a passive situation, whereas chronic illness was a medical condition demanding assertive action. This insistence on continuing searches for medical interventions and diagnoses was at the heart of the group’s persistent endorsement of greater access to a wider array of genetic testing technologies for their children. It is this quality of expert patienthood within NZORD that forms a point of shared experience within otherwise oppositional discourses. Just as those with chronic illness and impairment would do, NZORD members searched for the “good” and biddable doctor.

The Process of Moral Reasoning—Pathways to Virtue While organizationally aligned with the state’s principalist approach to increased prenatal testing, there was internal disagreement with this orientation among individual NZORD members. This discursive complexity became apparent when only half of the interviewees observed that they were fully prepared to contemplate testing in their own families. The lines of differing personal responses did not fall between those who had casually mentioned that they were “disabled” and those who were not. For example, two members made explicit reference to their genetic difference and stated unequivocally that to consider that an embryo would be discarded for having a chromosomal re-arrangement (such as their own) was quite unthinkable, although they endorsed the technique for certain other conditions. A third member was adamant that to choose to terminate an embryo for a condition similar in effect to her disability was quite reasonable: “I mean I wouldn’t feel outraged if someone decided not to have a child because it contained a [name deleted] gene. I’m me you know, and you’re talking about someone who hasn’t been born yet.” The organizing principles guiding what we came to interpret as virtuous action around testing appeared instead to consist of several trigger points, the resolution of which created different responses (all of which could be encompassed within the notion of the public defense of the “right to choose,” which we will analyze later). For around half of the participants, virtuous action arose as a consequence of thorough reflections on the suffering that one’s children would bear and one’s duty as a parent to protect children from such suffering. However, for the rest there was more variation (i.e., for some, the most important decision points depended on where one understood life and personhood to begin). For those who recognized human life as appearing some way through a pregnancy, the value of PGD lay in avoiding the ethical dilemmas of terminations. Form was often the argument used to remove what had previously been obstacles to terminations during pregnancy for some of the participants. For example, one mother spoke of embryos as “just some cells in a petri dish.” One father said of the embryo: “It has no little arms, no little legs,” although he observed that arguments to destroy embryos were still difficult to articulate in public as they went against dominant ideologies of “loving children no matter what.” However, all participants who countenanced the use of PGD to

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select against certain embryos regarded the moment of birth as the time when the principle that “one loves one’s children no matter what” would apply. Another mother endorsed the use of prenatal testing to select against certain degrees of chromosomal difference because of her understanding that personhood existed in a pre-mortal form prior to conception. In this case, the use of testing would allow her to ensure that her children arrived in a healthy body and no matter how many times a parent used the testing technique, the number of children allotted to them would still arrive subsequently. Virtuous action lay in using all the technologies available to oneself to allow the child to be born in good health. A completely different pathway was described by two mothers who (while still defending the right to choose) considered that human life and more particularly their own child’s life began at the moment of conception. For this reason, PGD was not a suitable test to undertake. Reflecting on the still quite recent death of her child, one mother stated: “It should be that disability or serious illness is just a part of life, I mean death IS part of our life, and I would much rather see a cure than you know selecting children on the basis of whether they had the disease or not.” She recalled how, when she had become pregnant again (just after her son had died), she had undergone chorionic villus sampling at that time but only for the purpose of “getting the pediatrician ready” (i.e., better prepared) for the next child and to know whether she should take additional nutritional supplements to help the child she was carrying. (In fact, this new pregnancy had not been affected.) Similar reasoning (and action) was followed by the mother whose sons had metachromatic leucodystrophy, as she was able to do research with her husband during the second pregnancy about the value of bone marrow transplants for the child and in all ways be prepared to actively treat him to assist his symptoms. Even so, she agreed that testing should be offered for other families. NZORD members thus engage in a type of virtue ethics in which parents promote access to testing for families and individual decision-making about genetic testing to avoid the two extremes of no access to testing at all or of forced enrolment into testing programs regardless of parent’s wishes. Such a position does the virtuous work of developing one’s character in the face of a difficult trial. The key point in this account, however, is that while virtue ethics appears to explain the moral reasoning process for members of NZORD in their private worlds, their public submissions to ministers, government agencies, royal commissions, and so on argue instead on the basis of autonomous decision-making that engages most profitably with the dominant principalist discourse of the state.

Saving Downs and the “Bus of Best Practice” Unlike the previous group, Saving Downs has emerged recently by budding off from a long-established patient support group for families and children with Down syndrome. It began with one of its members being accosted in a public park by a stranger who screamed at them to explain how they could have borne a child with Down syndrome. This story was recounted on Facebook, and the group formed from the incoming flood of electronic support and discussion. The ethical discourse of Saving Downs incorporates a citizens’ rights approach, rather than a focus on the conservative discourse of a right to life (despite some of its members

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belonging to conservative prolife support groups) and has been particularly effective politically. Beyond their previously described success in changing the context of first trimester screening, the group has taken its claim of the attempted genocide of people with Down syndrome by the New Zealand state to the International Criminal Court, where it has been accepted for further investigation. Sustaining this allegation of genocide requires frequent public linking of screening technologies to images and the language of holocaust (as observed by the authors in public seminars and mainstream media interviews) and a re-biologizing of people with Down syndrome into one of Rabinow and Rose’s (2006:197) “new collectivities” of biological citizenship. Despite this public vehemence against screening, two of the nine members interviewed could accommodate (in private) the decision of other families to terminate their pregnancies, revealing a lesser but still existing divergence between moral reasoning in public and private—just as for the NZORD members. Saving Downs has clashed most prominently with the dominant ethical discourse of the state through its allegations of coercion in clinical testing—or the “bus of best practice,” as this informant describes it: We had to ask [the midwife and the obstetrician] four times I think it was, before they would tell us WHY we were doing the amnio. Like they [would] just fob us off and say “Oh well, it’s just the next step” or “You know . . . it’s just part of the process that you go through.” And we were just like [pauses] . . . but what is . . . [lost for words] Interviewer: The process? Yeah, that’s right! What BUS are we on? We seem to have been thrown onto some bus with NO idea where it is headed, and why we’re going there, and they were both really evasive—both of them. And we had to like [say] “No, we really want an answer to this question before we move on.” And FINALLY they did admit that it was taking us to termination . . . that seemed to be the only path, the only option . . . we were just told “the next step is amnio.” . . . I actually really got [angry]. It ticked me off. Which is one of the reasons why I agreed to do this interview ‘cause I thought—“I’ve got to tell SOMEBODY!” All of the interviews could recount several instances of such coercion, the Saving Down Facebook pages offers further instances, and their public outreach also recounts these practices. One interviewee, Stella (whose family included two adopted children with Down syndrome), emphasized the speed with which women were pressed to take on the often unexpected news that their child had Down syndrome and then the pressure to make a decision about whether to terminate the pregnancy or not. As well as reading postings from many women in such circumstances on the various websites that she subscribed to, Stella also had her own experiences of a very difficult birth of a gravely ill child. This sensitized her acutely to the emotional pressures and grief that such decision-making entails and the manner in which a sense of medical crisis and time pressure intensifies these feelings.

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Another interviewee, Mark, argued that parents needed “to fight for any positive information” about how to raise a child with Down syndrome and most interviewees recounted stories of doctors, nurses, and midwives noting dismissively “You don’t know what you’re doing,” “Why do you want a Downs?” “Most people abort,” in response to the parent’s request to not have any further scans or procedures. Despite Mike (a senior member of the group) noting in a counterbalancing way that many GPs and associated health care workers were helpful and compassionate and quickly provided both support and positive information about life with Down syndrome, the public thrust of the group was to reject a disabling society and to vilify the state’s role in its creation.

Discussion Our analysis of the strategies, techniques, and practices that make up this Aotearoa/New Zealand style of bio-politics suggests that the country’s nickname of “the shaky isles” is as good a metaphor for its contested moral landscapes as it is for its geology. The moral discourses we have identified of principalism, virtue ethics, and citizen’s rights (among others) both resist, accommodate, and fold over on each other in patterns of great complexity that shift with time. Rather than being representative of a universalizing and medicalized moral reasoning drawing on ideas of reproductive autonomy, the varied points of view revealed in this study are specific historical moments in a wider social process where both poles of the application of power (the state and the citizenry) operate on each other in a complex and simultaneously experienced pattern. People and their constituent communities are pushed apart (by views on genetic testing, for instance) and then sometimes brought back together again in a common interest (such as addressing the need for better conditions for family caregivers). Some activist groups such as NZORD remain in a seemingly stable public configuration for many years, although within the constituent families there are contradictory lines of moral reasoning. Others, such as Saving Downs, erupt with a sudden brilliance into the public affairs of the nation. Furthermore, the relationship between the discourses underpinning these two activist groups, we note, is more nuanced than completely oppositional. For example, both Saving Downs and NZORD appeal to biological citizenship, although they argue that the denial of these rights is located in different social spheres. For Saving Downs, the agitation is for relief from the perceived clinical pressure to terminate that its members argue is the case for local clinical encounters for a pregnancy identified with Down syndrome (saving.downs.org). In the case of NZORD, biological citizenship has focused on collectively gaining more rather than less access to selective reproductive technologies through public information sharing about the suffering of their children. NZORD’s political claims operate in conjunction with their recognized role as “expert” patients—an expertise that allows them to confront and manage clinical pressure more successfully than the Saving Downs members and to critically assess the potential problems associated with medical interventions. Thus, biological citizenship empowers both groups, although along contradictory trajectories. Such complexity in moral reasoning processes is also observed by Raspberry and Skinner (2011) in relation to the variety of perceptions on

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exactly where it was that pathways to the enactment of responsibility and biological citizenship lay in their U.S. study with carriers of Fragile X. Another insight into the discursive complexity of moral reasoning is achieved by accounting for the wider politico-economic backdrop that offers specific affordances and impedances to the ethical projects of the citizenry. By studying this bio-politics, it becomes possible to identify the cosmology behind the discursive framings of moral reasoning. The cosmology around genetic testing in Aotearoa/New Zealand that our research reveals pivots on an aspirational social ideal of the provision of choice to citizens as an appropriate position from which to regulate selective reproductive technologies, as opposed to Ivry’s (2006) account of secrecy or Hashiloni-Dolev and Weiner’s (2008) conflicting accounts of fetal selfhood. This is so despite observations from the breadth of our studies that few participants think of choice as the process that they engage in for moral reasoning and despite the press of principalist arguments that suggest it is the provision of informed choice that makes difficult clinical decisions ethical. This critical reading of choice is also noted in Gammeltoft and Wahlberg (2014), who argue that choice is experienced by many as “obligation,” for example. Such a cultural ideal of choice as a shared symbol of a decent society, rather than as a component of the moral decision-making process, explains how some NZORD members hold such heartfelt opinions against testing in their own families but willingly promote a shared public position in favor of testing through appeals to the virtue of offering other families choice. It is this same social ideal of choice that Saving Downs also appeals to, so that women may have the choice to not be tested and to not be subjected to abuse for holding on to this ethical position. The state, on the other hand, works with a different meaning of choice. It argues that access to testing ensures that patients have access to meaningful choice (as an expression of their autonomy) when considering whether to terminate a pregnancy and that they are not subjected to malfeasance through outdated and less than best practice in community testing. It is reflected also in the stoic upholding of the right to choose by cytogeneticists as an underlying ethics of their service provision, even as they internally ponder the scientific validity of the choices that they hear physicians offering to clients. Such a finding parallels Sleeboom-Faulkner’s (2010) idea that women (and men) are exposed to frameworks of choice rather than being explicitly able to formulate their own choices. By adopting the biopower analytic for this study, we can provide a specific example of the socio-historical construction of one such framework. We also suggest that the idea of ramification of choices is exemplified in the local virtue ethics enacted by NZORD and the contrasting citizen’s rights based appeals by Saving Downs and their contradictory effects on the state’s ethical governance of reprogenic testing technologies. The point is that while all of our own study participants might be observed externally and from a distance as engaging in a choice, the term “choice” masks some very complex situated moral reasoning, which, in our New Zealand example, produces results in practice, and often in private, that are contrary to the publicly stated ethical responses to genetic testing created by public groups engaging in deliberative ethical governance processes. An additional and unintended outcome of our use of a biopower analytic to explore moral reasoning styles has been the capacity to engage in comparative

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studies of the state’s effects on citizen’s moral reasoning (and vice versa) between ´ New Zealand, Finland (Meskus 2012), and Iceland (Gottfreðsdottir and Arnason ´ 2011). In each of these three studies, the discourses of moral reasoning in the emergent social collectivities are quite different—a zone of exclusion in Iceland, what Meskus (2012) terms “personalised bioethics” in Finland, and the currently presented virtue ethics and citizen’s rights–based discourses in New Zealand. This is the case even though in all three sites a principalist approach to ethical decisionmaking was the initial thrust of the state-led discourse. Why such varied responses have occurred in the face of the globalizing potential of the four principles bioethical regulatory approach is related, we argue, to the varied local contexts with which this discourse must interface. It is from within this shared network of local meanings that citizens draw organizing strategies and frameworks to counter, accept, or infiltrate the state’s dominant public moral rhetoric. Finally, we also note that for those inhabiting the contested and postcolonial landscape of selective reproductive technologies in Aotearoa/New Zealand, the trope of moral “pioneering” is perhaps a little too triumphalist a term for such a territorialized domain. The public tensions we have discussed between the state, NZORD, and Saving Downs, demonstrate how Rapp’s moral pioneers are no longer left to think things through in the private sphere but must also engage with public and highly politicized processes of moral reasoning, the outcomes of which are difficult to anticipate for any particular bioethical complex without an accompanying detailed knowledge of local contexts of meaning surrounding the good in testing. Acknowledgments. We thank the participants in this study and note that the views expressed in our work are our own rather than those of NZORD or Saving Downs. We also thank the various funders of this work, including the Marsden Fund administered by the Royal Society of New Zealand and our respective universities.

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