Sociology of Health & Illness
© Foundation for the Sociology of Health & Illness
Edited By: Gareth Williams and Ian Rees Jones (Joint Editor-in-Chief), Davina Allen, Eva Elliott, David Hughes, and Joanna Latimer
Impact Factor: 1.988
ISI Journal Citation Reports © Ranking: 2015: 8/39 (Social Sciences Biomedical); 17/142 (Sociology)
Online ISSN: 1467-9566
Virtual Special Issue on Selective Reproductive Technologies
Editorial by Clare Williams
Sociology of Health and Illness journal has a fine tradition of publishing articles exploring reproduction and assisted reproductive technologies (ART). This editorial focuses on a very specific aspect of these areas, namely selective reproductive technologies (SRTs). Selective reproduction has a long history – from infanticide through to enforced sterilisation and terminations of pregnancy. What is new, however, is the development and increasingly routinised use of SRTs aimed at preventing or facilitating the birth of certain kinds of children.
As might be expected, the majority of articles discussed in this Virtual Special Issue were published over the past decade, with most appearing in the last few years. This coincides with the increased use of these technologies on a global scale. Pilnick and Zayts (2012) suggest that the proliferation of qualitative sociological research examining antenatal screening for fetal anomalies can in part be explained by the way in which eugenics 'hangs heavy over the fields of medical practice associated with genetics'. They also argue that since termination of pregnancy is the main 'intervention' that can be offered if anomalies are confirmed, profound social and ethical issues are raised. However, the growing use of pre-gestation testing technologies such as pre implantation genetic diagnosis (PGD) of embryos now takes screening and testing to an even earlier stage of the reproductive cycle, introducing different social, ethical, legal and clinical dilemmas.
Sociology has a long and distinguished engagement with normative issues - that is, with what ought to be done. Indeed, the notion of not just understanding the world but changing it is central to the disciplinary ethos of sociology. Sociologists have shown how philosophical debates on, for example, informed consent, can be inadequate when they run up against the complexities of the real social worlds of the clinic (Corrigan, 2003). It will come as no surprise then, that many of the articles highlighted in this VSI make an important contribution to ethical debates in the area of SRTs.
Decision making, choice and knowledge
A cluster of papers about prenatal screening and testing have analysed the socially conditioned nature of the problems that practitioners and patients encounter in relation to choice, decision making and knowledge production. Because of the link with eugenics, in Western cultures at least, there is a strong focus on individualising choice and decision making. Testing is now associated with 'responsible' maternal behaviour, and it has become increasingly difficult to opt out of screening and testing (Williams 2006).
One of the first papers in the journal to look at genetic risk (Parsons and Atkinson, 1992) explored lay constructions of genetic risk for women with a known risk of carrying and transmitting the gene responsible for Duchenne Muscular Dystrophy. They identified difficulties women had in interpreting risk information, and how these risks were defined primarily in relation to reproductive risk, potentially giving rise to 'felt' stigma, and a spoiling of social identity.
Fast forward almost two decades and a number of papers explore similar issues, but within a completely altered context involving SRTs which have been routinised as an integrral part of prenattal care. In a study carried out in California, Markens et al (2009) interviewed 147 Mexican-origin pregnant women deemed to be at 'high risk' of a fetal anomaly following prenatal screening. The paper situates women's 'choices' within the gendered context of 'increasing expectations of intensive and exclusive mothering in which women are held individually accountable for their mothering/parenting and in which more and more is expected of women as mothers' (pg 50). One of the consequences of the increased normalisation of prenatal screening is, they argue, that women's decision making about prenatal screening and testing is 'the beginning of their ongoing activity of 'doing motherhood' in contemporary US society (pg 50). They conclude that in relation to women's decisions about undergoing further testing, neither their general attitudes towards abortion, experiential knowledge nor biomedical knowledge map clearly on to decisions.
Two papers report on the experiences of mothers and parents who already had a child with a genetic condition. Raspberry and Skinner (2010) interviewed 108 US mothers who had at least one child with Fragile X syndrome. Their accounts showed that the majority of mothers chose not to have another biological child once they learned of their carrier status. Genetic responsibility and reproductive agency were discussed in terms of an obligation not to risk having another child who carried the Fragile X gene. In her paper, 'Choosing not to choose: reproductive responses of parents of children with genetic conditions or impairments', Susan Kelly (2009) found that the majority of parents (primarily women) interviewed (again, in the US) chose not to choose. They either avoided future pregnancies, declined prenatal testing, or limited testing to 'for information only'. She argues that such decisions should not be seen as a simple rejection of medical intervention, opposition to abortion, and/or affirmation of a positive parenting experience with an affected child. Instead, choosing to avoid making the choice should, Kelly argues, be seen as a strategy of responsible parenting emerging from ambivalence towards the various options presented by SRTs.
Partly in order to dissociate itself from eugenics, genetic counselling and linked to that, prenatal screening, values the principle of non-directiveness as a key feature. Despite the many criticisms, non-directiveness is still seen as the gold standard by which professional practice is measured. There are a number of qualitative studies which focus on how professionals fail to live up to such ideals (eg Pilnick 2002; Pilnick 2008; Pilnick and Zayts 2011; Markens et al 2009). For example, drawing on conversation analysis (CA), Pilnick illustrates that whilst there was clear evidence that UK midwives explicitly invoked the issue of decision making, there are other more subtle factors in the presentation of screening tests which undermine whether, and indeed how, recognition of choice is received by pregnant women.
In their recent article on knowledge production and decision making in first trimester screening in Denmark, Schwennesen and Koch (2012) develop these arguments. They identify three modes by which practitioners 'do' good care: attuning expectations and knowledge, allowing resistance, and providing situated influence in the relationship between the pregnant woman and the professional. Such practices, they argue, express ways of reducing emotional suffering and supporting a pregnant woman's ability to make meaningful choices on the basis of uncertain knowledge. Rather than an ethics of non-directiveness, these modes of good care express an ethics of being locally accountable for the ways in which programmes of prenatal testing intervene in the lives of pregnant women; and of taking responsibility for what emerges through such knowledge production. This adds support to the work of Wainwright et al (2006) and Hashiloni-Dolev and Weiner (2008), who found professionals to be 'strongly committed to ethics, in the sense of being attentive to what is considered socially acceptable in their culture'.
Related to this are papers focusing on the technique of pre-implantation genetic diagnosis (PGD), which is offered to women/couples who are at risk of having a child with a serious genetic condition (Ehrich et al 2012; Ehrich et al 2008; Ehrich et al 2007) . Embryos are created through IVF, and cells are then tested for specific genetic conditions. Ehrich et al's 2007 paper explored the views of staff in this area, particularly how far they felt able to support the autonomous reproductive choices of women/couples in relation to two 'grey areas' - accepting 'carrier' embryos within the goal of creating a 'healthy' child, and social sex selection (SSS) of embryos, both of which are technically possible when selecting PGD embryos for transfer. These areas challenged staff's resolve to offer individual informed choice, in the face of their awareness of the possible collective social effects that might ensue from these individual choices. Again, the authors conclude that these new forms of choice pose a challenge to traditional models of individual autonomy, and that 'relational autonomy' (which depicts individuals as being constituted through relational networks) may be a more suitable ethical model to describe the principles being drawn on by staff. In a different context, the Review article by Raz (2009) focusing on reprogenetics (genetic technologies connected to reproduction) and community genetics also points out limitations to the individualist approach, when reprogenetic programmes may be endorsed by communities in spite of the resulting limits on individual choice – for example, carrier screening for thalassemia in Cyprus.
Shifting perceptions of pregnancy, responsibility and the fetus
As Kelly (2009) and others argue, the routine presentation of choice and responsibility for the health and 'quality' of potential children has transformed the experience and meaning of pregnancy. This routinisation has drawn criticism from many, including disability rights activists. Tom Shakespeare (1999) argues that decisions about prenatal testing and ensuing terminations are often based on negative information, and on 'questionable assumptions' about living with a disability, and the impact that a child with a disability might have on parents and families. He states that this routinisation sends a negative message to society both in terms of acting specifically to avoid the birth of a child with a disability, and in relation to understandings of parent-child bonds.
Developing this theme of parent-child relationships, Scully, Shakespeare and Banks (2006) explored English lay people's thoughts about social sex selection, using group discussion methods. In the UK and many other countries, SSS is prohibited by law. They found one of the most consistently expressed ideas to be that children should be regarded as a 'gift', not a 'commodity'. They point out that although much of the bioethics literature focuses on parental autonomy, their lay discussants balanced that principle with the need to respect the personhood of the potential child, and the characteristics of a good parent. More generally, they argue that as secular-liberal bioethics tends to draw on a limited range of experience and a narrow repertoire of arguments, the input of lay people is particularly important in order to illuminate areas of moral importance that can be omitted with this style of bioethics.
Very few papers have specifically explored gender differences in relation to feelings about genetic responsibility and prenatal screening. Reed (2009) interviewed pregnant women and their male partners in the UK, and found both women and men had a sense of genetic responsibility for the fetus throughout screening. She argues that whilst men's sense of responsibility manifested itself only indirectly through shared responsibility with their partners, and directly through their own genetic connections with the fetus, women's feelings of responsibility was directly 'embodied', and also heightened with the detection of 'faulty' genes. There is also very little research exploring men's views of pregnancy, responsibility and prenatal screening. As part of her work exploring transitions to fatherhood, Draper (2002) focused on men's experiences of the ultrasound scan – which is both a social and screening event. Whereas women have the embodied experience of pregnancy, their partners' experiences are mediated by the pregnant woman's body. Thus, ultrasound is, she argues, a ritual which enables men to make and mark their transition to Western fatherhood, endowing as it does, a social identity on the fetus/baby.
It has been argued that SRTs may impact on the status of the fetus, and consequently on women. In her paper focusing on UK practitioners working in the area of fetal surgery, Williams (2006) explores some of these issues. She summarises some of the inter-related factors which make decisions in this area of medicine so difficult, including: the uniqueness of the maternal-fetal relationship; decision making based on what is often risk and probability based information; the option of obtaining a definitive diagnosis which may itself result in a miscarriage; the influence of enhanced visualisation technologies; decision making in a highly-charged moral area, where both partners may have differing views about available options; the rhetorical emphasis within prenatal screening of non-directive counselling and informed choice; and prevailing social values and cultural meanings of disability. Williams found that pregnant women and practitioners themselves could feel an imperative to 'do something', rather than nothing, which included undergoing fetal surgery with a low chance of success. She also noted how, because of the orientation of Fetal Medicine Units, pregnant women could almost paradoxically become less 'visible', whilst concurrently having to be more responsible for morally complex decisions.
Cultural aspects of prenatal screening programmes
Screening programmes are of course social interventions, as much as they are medical interventions (Armstrong and Eborall 2012). As SRTs travel around the globe they can be implemented in very different ways, with medicine, social values and culturally determined meaning being closely intertwined. In their paper on decision making following a positive prenatal screening in Hong Kong, Pilnick and Zayts (2012) preface their findings by commenting on a recurring feature of the data – namely, that doctors in some instances could be quite directive in consultations, both explicitly, by seeming to assume that the test would take place; and implicitly, through the information they chose to offer or withhold. The latter includes an example where a doctor is reluctant to discuss Down's syndrome or its implications until after the diagnostic test has occurred. In her study exploring why Israeli women seek prenatal genetic testing, Remennick (2006) argues that the main factors driving women's choice of prenatal genetic diagnosis included the fear of having a sick and/or socially 'unfit' child in an unsupportive environment; strong endorsement of testing by gynaecologists; popular and professional discourse on the common Ashkenazi mutations, causing 'genetic anxiety' in this particular ethnic group; and the emerging social pressure for comprehensive prenatal screening as an integral element of 'good motherhood'.
Hashiloni-Dolev and Weiner's (2008) research reports on a cross-cultural comparison of Israeli and German genetic counsellors' perceptions of the moral standing of the fetus. In short, they argue that the two groups employed different ethical reasoning in their considerations of the fetus. German counsellors perceived the fetus to be an autonomous being, and employed a 'biological ethics', which revolved around debates over the particular biological stages through which autonomy is acquired. In contrast, Israeli counsellors did not consider the moral status of the fetus independently of its relations with its family, leading to the use of a 'relational ethics'. The authors argue that both ethical models make use of biological features of fetal development in a way that corresponds to local cultural assumptions. They also suggest that these differences are influenced by historical, political, legal and religious traditions in both countries with regard to abortions and the fetus.
Sociology of technology governance and expectations
The ways in which innovative SRTs get incorporated into health care has received only limited attention from papers published in the journal. Williams (2006) describes how, within the antenatal setting, rather than being strategically introduced, screening programmes tend to 'creep in'. Once underway, this subtle but often rapid cycle of incorporation, routinisation and consumer demand, is difficult, if not impossible to interrupt. Drawing on a Science and Technology Studies (STS) theoretical framework, Lehoux et al (2009) explored the views of 28 Canadian medical specialists and experts on three controversial innovations, one of which was 1st trimester prenatal screening for Down's syndrome. They found the scientific, clinical and social arguments combined to create a reasonably consistent narrative for each innovation. Their comparative analysis suggests, they argue, that such narratives bring about a 'soft' resolution to controversies, which relies on a tacit understanding of the social desirability of innovations, which in turn smooths the path for their routinisation. Although they found some dissent amongst specialists, the governing narrative was informed by an understanding of the social desirability of aborting fetuses with Down's syndrome. In conclusion, the authors highlight the importance of analysing such specialists' arguments both for and against new technologies, because of the authoritative and influential ways in which such arguments are viewed.
In a prescient paper published 10 years earlier in 1999, Ettore reported findings from a European study on experts' perceptions of reproductive genetics and prenatal screening. It is worth noting that she cites only two SHI papers: Davison, Davey Smith and Frankel's (1991) classic article on lay epidemiology and the prevention paradox; and Richards (1993) influential article, 'The new genetics: some issues for social scientists', indicating the very recent growth of this area in the journal. She describes how experts employed a series of normative strategies, including claiming ownership of knowledge and practices; separating the social and scientific; and advocating the application of bioethics in their genetics work. Her conclusion, entitled, 'The need for sociological vigilance', ends with this rallying call: 'As sociologists, we have the important task of uncovering some of the unintended consequences of the new genetics… the intellectual issues that these experts are concerned with are deeply intertwined with social and political questions concerning the privileging of scientific knowledge and nature over ethical values and social issues. Reproductive genetics embodies complex social relationships and experts involved in these relationships are key players in cultures where genetic knowledge is being valued increasingly on a daily basis' (pg 555).
The articles reviewed here cover a range of important issues relating to SRTs. At the micro level, they are particularly strong in using qualitative methods to illustrate the social, clinical and ethical issues which result from the use of these technologies in the clinic. They illustrate clearly how Western philosophical debates and recommendations on, for example, non directive counselling, informed choice, autonomy and reproductive decision making can be inadequate when they run up against the complexities of the social and clinical setting. It is perhaps pertinent to note that a number of these studies and papers have been funded by the UK Wellcome Trust Biomedical Ethics Programme, and to recognise the importance of such funding streams for particular areas of work.
However, there are obvious gaps in the areas covered. For example, it is notable that only one article explored in any depth the ways in which these technologies reach the clinic. Future papers could explore the role of governments, policy makers, commercial companies and 'experts' in promoting and/or regulating the use of SRTs. Comparative studies in different national contexts would also help shed light on what state-citizen relationships are operating in relation to SRTs. For example, what national notions of disability, responsible motherhood and parenthood are at work, and how do these influence the promotion, regulation, offer and uptake of SRTs? Are there national or local contexts where the introduction or roll out of SRTs have been opposed, and what effects did this have? What are the ethical/philosophical principles being drawn on in other cultural settings, and how do these interface with SRTs?
There are very few papers which explore gender differences. In her article, Reed suggests some key areas for further exploration, including the ways in which gendered patterns of responsibility relate to screening for different conditions; and the ways in which attitudes towards different types of screening interact with biomedical discourses on disability and race and ethnicity.
Finally, in relation to theoretical perspectives, there are very few articles drawing on, for example, Science and Technology Studies perspectives, but those that do – LeHoux et al's paper springs to mind - make a very thought provoking contribution to the area of SRTs and to the journal. I concur with Armstrong and Eborall (2012) who, in their Introduction to the latest SHI monograph on the sociology of medical screening, emphasise the need for studies and papers which develop and extend concepts and theories that can be applied more widely.
Hopefully this Virtual Special Issue will encourage others to explore these fascinating areas which are at the centre of profound debates about the sorts of children we want to be born, and how we envisage the society that they will be born into.