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New Genetics and Society
Critical Studies of Contemporary Biosciences
Volume 30, 2011 - Issue 1
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Articles

Risk, parental autonomy and the epistemic divide: preimplantation genetic diagnosis in the Australian print news media, 1990–2007

Pages 115-131 | Published online: 03 Mar 2011

Abstract

Preimplantation genetic diagnosis (PGD) is a reproductive/genetic technology which has become the subject of public and scholarly debate because it involves the evaluation and consequent selection (and implantation) or destruction of human embryos. This research investigates the way PGD is constituted in the Australian print news media. Foucauldian discourse analysis reveals that proponents draw on their direct knowledge and experience of PGD to support their claims. There is an epistemic divide between consumers and others claiming direct knowledge, and critics and others drawing on indirect or abstract understandings of PGD. This divide characterizes the discourses present in the data and is directly linked to changes in these over the period under analysis.

Introduction and background

Preimplantation genetic diagnosis (PGD) is a reproductive/genetic technology in which human embryos in vitro are genetically screened (using cell biopsy) prior to selection and transfer to the womb (Braude et al. Citation2002).

Theoretical perspectives on PGD (and on human genetics more broadly) draw on the twin concepts of risk and responsibility. Preimplantation genetic diagnosis occurs in a social context in which dominant health risk discourses encourage personal, parental and familial responsibility (Polzer et al. Citation2002, p. 156, Lupton Citation2003, p. 166, Kerr Citation2004, p. 81). Lupton (Citation1999, p. 104) draws on Beck Citation(1992) to argue, “reflexive awareness and concern about risk pervades modern sensibilities.” A Foucauldian governmentality approach reveals that this pervasive sense of risk contributes to the conceptualization of the “autonomous, self-regulating moral agent” who, apparently without coercion, behaves according to broadly accepted risk positions (Lupton Citation1999, pp. 104, 105–113). Kerr and Cunningham-Burley Citation(2000) argue that the new human genetics are highly characteristic of reflexive modernity and the rhetoric of risk (Kerr and Cunningham-Burley Citation2000, p. 284). Their analysis suggests that the practices of the new human genetics represent the embodiment of the often contradictory conditions of reflexive modernity as they are book-ended by notions of autonomous choice on the one hand and individual responsibility on the other (Kerr and Cunningham-Burley Citation2000, pp. 284–286). They acknowledge the potential eugenicist implications of PGD but point out that sociology has the capacity to disrupt the dominant discourses of risk, responsibility, choice and autonomy which underpin such concerns (Kerr and Cunningham-Burley Citation2000, pp. 296–298).

Habermas Citation(2003) is also concerned with eugenic risk that he associates with PGD. He argues that PGD undermines our basic humanity and has far-reaching implications for the instrumentalization of human life. Habermas' position is echoed in that of popular futurist Fukuyama (Citation2003, p. 7) who argues that PGD and other forms of biotechnology threaten to “alter human nature and thereby move us into a ‘posthuman’ stage of history.” Franklin and Roberts (Citation2006, pp. 32–39) argue that these fears result from muddied thinking about the concept of “human nature” as well as an inability to distinguish between the desire of parents to provide the best possible start for their children and the design of children in and of itself.

An alternative perspective is proposed by Foucaldian sociologists. Rose (Citation2005, p. 7) maintains that the “troubled discourse” of writers such as Habermas and Fukuyama is built upon a dystopic interpretation of “overstated claims.” Rose (Citation2005, p. 12) draws on Rapp Citation(1999) to label PGD consumers as “ethical pioneers” and lauds them for engaging with a complex array of social, technical, ethical and practical demands. Petersen (Citation2006, p. 488) agrees, stating that for individuals facing decisions about PGD, “issues of identity, risk and responsibility for others are likely to take on heightened significance.” Petersen (Citation2006, p. 495) maintains that perspectives drawing on an ethical framework are inherently unable to make sense of the complex and distinctive questions associated with PGD and other forms of human genetic technology, while sociology as a critical discipline is able to offer a more sophisticated examination of both the “normative and social justice implications” attached to these processes.

Bunton and Petersen Citation(2005) suggest that Foucault offers a number of analytical techniques and conceptual tools for understanding the ways in which PGD embodies contemporary surveillance and risk discourses. They argue that Foucault's governmentality thesis provides a framework for understanding PGD in terms of neoliberal rationality and governance regimes (Bunton and Petersen Citation2005). Such public policy and individual governance regimes are based on neoliberal values of individual choice, autonomy and responsibility (Petersen Citation1994, p. 140, Kerr and Cunningham-Burley Citation2000, Novas and Rose Citation2000, Galvin Citation2002, Smith Citation2003). Bunton and Petersen (Citation2005, p. 2) claim that Foucauldian approaches allow for a more critical exploration of questions “often left unexplored by recent research on ethical, legal and social issues” associated with PGD. They propose a sociological scholarship of human genetics technologies which unpacks “the intimate relationship between ethical considerations and governance” (Bunton and Petersen Citation2005, p. 9).

The empirical literature exploring PGD and related genetics concepts has not fully engaged with the concepts highlighted in theoretical discussions. Some research suggests parents view the idea that undergoing PGD is a “choice” with ambivalence (Roberts and Franklin Citation2004, Franklin and Roberts Citation2006). Participants who undertook PGD in order to prevent the conception of a child who will experience a severe or fatal illness argued passionately that in this context PGD is not a “choice” but a “necessity” (Roberts and Franklin Citation2004, p. 288). This research highlights the complex decision-making processes PGD consumers undertake, and the way in which these decisions are framed in terms of parental responsibility. In light of these findings, it is unsurprising that participants expressed anger and resentment towards media depictions of PGD which rely on the “designer baby” trope (Roberts and Franklin Citation2004, p. 289).

Conrad (Citation1997, p. 142) uses a social constructionist approach to demonstrate that genetic explanations for social problems are gaining currency due to their apparent ability to simplify complex issues: “identifying specific genes seems so much neater than complex, messy, epidemiological and social analyses.” Conrad explored three media debates about the potential application of PGD: alcoholism (Conrad and Weinberg Citation1996), homosexuality (1997), and “race” and intelligence (1997). Conrad (Citation1997, p. 150) argues that when genetic explanations are combined with the media's tendency to oversimplify complex issues, genetics becomes privileged in the public discourse about social problems.

Several studies have identified the use of metaphor as a key element in reporting of human genetics (Condit Citation1999, Petersen Citation2001, Nerlich et al. Citation2003, Knudsen Citation2005, Petersen et al. Citation2005). While most of these studies (Petersen Citation2001, Nerlich et al. Citation2003, Petersen et al. Citation2005) used discourse and content analysis to identify discursive strategies such as metaphor, Condit (Citation1999, pp. 171–172) explored readers' responses to news articles containing different metaphors. The findings from this study suggest that while metaphors are implicated in reader interpretations, readers' overall interpretations rely on the “broader ideologies” within which metaphors are located (Condit Citation1999, p. 175). Condit (Citation1999, p. 176) recommends that future studies should explore how different subject positions are produced (and privileged) within media debates about human genetics and how this shapes the overall discourse.

Scholarly perspectives on PGD have highlighted the theoretical and conceptual salience of ideas about risk, responsibility, choice and autonomy. Studies of PGD in the media have not yet identified a link between dominant public discourses of PGD and these concepts. This article reports on research designed to address this gap and to explore the role of subject positions in the creation and deployment of these dominant discourses. As suggested in Bunton and Peterson (2005), a Foucauldian perspective has been employed as a framework for this research.

Method

This paper explores findings from a Foucauldian discourse analysis of Australian print news media coverage of PGD from its approximate date of first clinical use in 1990 through to commencement of the project in July 2007. Foucauldian discourse analysis is concerned with the way power and knowledge are constituted and produced in discourse. A Foucauldian approach draws on both constructivist and interpretivist traditions within qualitative research. A Foucauldian perspective understands meaning to be produced and maintained within discourse (Hall Citation2001, p. 73) and is primarily concerned with situating knowledge within specific historical and cultural locations (Hall Citation2001, p. 76). Foucauldian discourse analysis is a loosely defined method based on Foucault's concept of genealogy. Genealogy is a style of analysis which uncovers continuities and discontinuities in the practices and strategies of knowledge and power used over time (Dreyfus and Rabinow Citation1982, pp. 104–108, Hall Citation2001, pp. 73, 75).

A broad sample of newspapers was indicated in order to ensure that cultural differences associated with geography and audience were addressed. Five newspapers were selected to provide this broad sample on the basis of their circulation (audience reach), publication format (tabloid/broadsheet), legislative jurisdiction (regulation or non-regulation of PGD), and geographic coverage (national/states/regional). Items from all genres were selected (e.g. news, editorials, feature articles, letters to the editor, etc.). Every item which directly referenced PGD by name or description was selected. One hundred and sixty-eight articles were identified and included in the final sample.

Analysis began with a close reading and re-reading of the data to identify both manifest and latent content. Statements were coded and grouped into discourses if they shared an object (Cousins and Hussain 1984, pp. 84–85, cited in Hall Citation2001, p. 73), drew upon shared discursive strategies (Carabine Citation2001), and if they produced the same or similar effects (Carabine Citation2001). Discourses were then conceptually mapped in order to identify relationships within and between discourses.

In this research, individuals who appeared in articles (i.e. consumers, geneticists, ethicists etc.,) are characterized as participants, as are the journalists and others involved in the production of media. This is to acknowledge the role of these individuals as participants in the creation and deployment of discourse. The representation of participants was analyzed, with particular reference to the use of illustrations, use of direct and indirect quotes, and tone and style of reporting. Absences and silences among participants, in concepts and in arguments, along with evidence of counter-discourses, were identified (Carabine Citation2001). The application of discursive strategies and occurrence of media effects were reviewed in terms of the effect these produced in shaping discourses. All aspects of the analysis were reviewed to identify changes over the period of analysis.

Findings and discussion

Discourses

Three groups of discourses were identified. While discourses were grouped according to their object, identified groups are not discrete. All discourses identified intersect with other discourses both within their analytical grouping and across other groups, as depicted in .

Figure 1. Relationships between discourses.

Figure 1. Relationships between discourses.

Discourses surrounding parents: choice, commodification and autonomy

The concept of choice is pervasive in these data. It is particularly explicit in headlines such as “Choosing the sex of your baby is just the beginning” (Gibson Citation1999, p. 3) and “Pick-a-baby: life or death choice as parents scan embryos for cancer” (Taylor Citation2001a, p. 1). Choice here is typically framed as parental choice. Words such as “pick,” “select,” and “decide” emphasize parental agency and suggest a process unfettered by regulation or constraint. Parents use “pick-an-embryo technology” (Riley Citation2002b, p. 5) to “make a choice in their reproductive abilities” (Tobler 2004, p. 6). Parents “can predetermine the sex of their child” (Callaghan Citation2002, p. 24) and “pre-select ‘desirable’ baby characteristics” (Madden Citation2003, p. 5). Parents “are choosing who lives and who dies” (Jones Citation1996, p. 3). Parents are not to be trusted with these choices, as they “can make poor decisions on behalf of their children, especially when driven by ambition, fads or wrong-headed expert advice” (Hope Citation2002, p. 9).

Unfettered parental choice is a target for critics of PGD who argue that (freedom of) choice can be an imposition on the freedom of others:

The reality is that every form of discrimination, whether it is for race, gender, marital status, religion, or in this case, genetic difference, is just a matter of individual choice. The wrong is precisely that categories of individuals are denied equality by the unjust choices of others. (Tonti-Filippini Citation2002, p. 18)

Parental choice is also highlighted in discussions which posit PGD as an alternative to termination of pregnancy. Parents who have a family history of genetic illness “face the difficult choice” (Stock Citation2001, p. 5) and are “forced to have abortions” (Pinkney Citation1998, p. 32) because they cannot “bring another baby in the world” (Whitworth Citation2000, p. 15). The choice to use PGD rather than terminate a pregnancy is “not playing God but being very sensible and moral about it” (Reardon and Gray Citation1999, p. 4). Parents feel “more comfortable with destroying three-day-old embryos that carry a genetic abnormality than terminating a pregnancy” (Davies Citation2003, p. 1) and “selecting an unaffected embryo is far more emotionally satisfying than having to terminate a pregnancy” (de Brito Citation2006, p. 22).

In these discussions, PGD is framed as saving parents from having to terminate or from having to decide whether or not to terminate. Thus the choice to undergo PGD is seen as both ethically more desirable and easier than the choice to terminate. Indeed, PGD is seen to be so much more desirable than termination as to be a non-choice: parents naturally choose PGD because it saves them from “having” to terminate.

PGD as a representation of the commodification of babies and children is persistent in both manifest and latent content. The ubiquity of the expression “designer baby” in reports gives rise to a number of semantic connections implying that babies conceived via PGD are “commodities to be sold” (Nerlich et al. Citation2003, p. 476). Designer babies are “made to order” (Pinkney Citation1998, p. 32) and “a supermarket product you can just pick off the shelves” (O'Brien Citation2005, p. 15). The semantic link to designer fashion is highlighted in the context of desirable characteristics: “… what does it mean to be human once we code fashions and fads into the genome?” (Nicholls Citation2001, p. 12).

The cost of PGD, the financial status of parents, and the commercial nature of IVF/PGD clinics is highlighted: “The pair denied creating a designer baby with the $87,000 treatment” (Herald Sun Citation2001a, p. 26).

The Brave New World is upon us as couples flock to clinics – promoted by catchy websites such as www.choosethesexofyourbaby.com and myboyorgirl.com – to determine the sex of their offspring … the price tag: $US18,480 ($23,760) plus travel. (Australian Citation2004, p. 21)

The wealthy couples are spending up to $25,000 to use a controversial embryo sex screening procedure that is banned in Australia … All couples had high incomes, with many couples working in the corporate sector. (Papps Citation2006, p. 2)

Women are singled out as direct and indirect targets for commodification discourses in a way that men are not:

Any woman so repulsed by maleness … should perhaps consider a) therapy and b) that bearing a loving son might help her restore her faith in men – rather than paying $10,000 to buy an IVF-design daughter. (Singer Citation1999, p. 20)

With more and more women waiting until their 30s to have a child, long after their fertility has begun to decline, [the IVF/PGD] market will grow as the Australian birthrate declines. (Cook Citation2004, p. 20)

The concepts of choice, commodification and autonomy are explicitly linked when proponents employ classic liberal philosophies to argue that parents should be free to make reproductive choices without interference:

Yes, for about $13,500 you can choose the sex of your child for non-medical reasons. While this process is regulated by an ethics committee, it does mean that parents of two girls who desperately want a boy now have that option. Medical director Professor Robert Jansen argues that as there is no Medicare rebate available and no drain on the public purse, this is a private matter between mother and father. Perhaps he's right. Why shouldn't Victorian couples have the right to choose the sex of their child? Is this really such an offensive concept? (Henderson Citation2002, p. 19)

People should be allowed to choose whether they have a male or female child. We live in a liberal democracy, not in one ruled by an individual or a single set of values or ideals, religious or political. Liberal democracy respects liberty or freedom, freedom to live the kind of life we choose, have children in the way we choose and when we choose – even if some people disapprove or believe it is wrong. (Savulescu in Savulescu and Tonti-Filippini Citation2004, p. 77)

Regulatory authorities are seen as “totalitarian” (Singer Citation1999, p. 20) for “questioning the ethics, the morality or the legalities” (Herald Sun Citation2002, p. 62) of parents. One parent likened the HFEAFootnote1 to “Caesar at the Coliseum. They have the right to choose life or death for our son simply by giving us the thumbs up or the thumbs down” (Riley Citation2004, p. 20).

Here parental autonomy is recast as parental responsibility. According to this discourse, it is the responsibility of parents to ensure their children are born free of genetic disease, to prevent pain and suffering. The interference of the state in the private functions of the family is a direct affront to dominant neoliberal ideas emphasizing autonomy and choice. In this context, PGD is acceptable because it occurs within a framework of individualized responsibility, rather than as an instrument of state control: “[PGD] is acceptable, because it is ‘voluntary, personal and based on a plausible view of what is good for our children,’ rather than a state-imposed vision of perfection” (Dunn and Noble Citation2005, p. 13).

Discourses surrounding children: natural, healthy, perfect, normal

While discourses focusing on parents emphasize parental agency, discourses surrounding embryos, babies and children reflect their passivity, their status as objects to be conceived, assessed, selected, implanted, born and cherished. They are both subjected to PGD and the objects of PGD.

Embryos, babies and children are assessed against a range of dichotomous descriptors. Conceptions are “natural” or alternatively, “nature is given a helping hand” (Riley Citation2004, p. 16). Embryos are “healthy” if unaffected by genetic abnormalities, or “unhealthy” if affected. Babies are “perfect” or “insufficiently perfect” (Robotham and Smith Citation2004, p. 27). Children are able to live “normal” lives, in contrast with the unspoken “abnormal” that this usage implies. These discourses are drawn upon by both proponents and critics of PGD.

The idea of a natural conception is often contrasted with PGD. This highlights the “unnaturalness” of PGD. References to natural conception are accompanied by caveats setting out the “risks” associated with this choice.

“Many couples may try to conceive a child naturally to be a tissue match for a sick sibling, but the odds are not good,” he said. “Now there is an alternative and couples in this situation should seriously think about it.” (Riley Citation2002e, p. 6)

The idea that PGD is any more unnatural than other medical interventions is specifically addressed by some proponents:

Most of medicine is unnatural in that it prevents us leading a natural life – dogged by disease, nasty, brutish and short. We are already designer humans living longer, better lives than any humans before. Technology allows us to avoid the lottery of nature – we should choose our destiny. (Savulescu and Tonti-Filippini Citation2004, p. 77)

Desirable embryos are “healthy” embryos. Only “healthy embryos are implanted into the uterus” (Taylor Citation2001a, p. 1): “The world-first DNA fingerprint test will enable prospective parents to have only healthy embryos re-implanted [sic]” (Taylor Citation2001b, p. 14).

The corresponding implication that embryos not selected for implantation are “unhealthy” is particularly contentious in relation to certain PGD applications. PGD for adult-onset illnesses blurs the ontological distinctions inherent in descriptions such as healthy and unhealthy. This ontological challenge to the human status of embryos is also evident in discourses drawing on the concept of perfection. In addition to being “healthy,” embryos are “perfect” and “near-perfect match[s]” for siblings (Riley Citation2003, p. 18) or have “perfect hearing” (Berry Citation2002, p. 22).

Allocating embryos the ontological status of “imperfect” is anathema to critics writing from a Christian perspective:

What we are faced with here is a distortion of basic values. The pursuit of human perfection is a distortion that rejects the idea of dignity inhering in every human being, however imperfect; no longer appreciates children as gifts; and fails to comprehend the “goodness of fragility”, the value of human diversity and the deepest dimensions of what it means to be human. (Pell Citation2007, p. 5)

Children conceived via PGD or siblings provided with donor products thanks to PGD are “normal” and have access to all the opportunities and abilities that this conveys: “Mrs Sunderland said …‘I'd just like him to be a kid and do normal things that kids do’” (Kelly Citation2004, p. 8).

Critics seek to interrogate the meanings attached to “normal” and to unpack the (literally) normative effects of this definition: “We set the standard of quality of life very high based on what we define as normal” (Robotham Citation2004, p. 1).

Some years ago the Murdoch Children's Research Institute used stationery that carried a very disturbing slogan with words to the effect “towards the day when every child is born normal with normal abilities”. The slogan was chilling for its eugenic aim of eliminating difference in the population. (Tonti-Filippini Citation2002, p. 18)

Dystopia and the critique of PGD

Critiques of PGD are primarily framed in terms of the potential risks posed by the technology. In general debates about PGD, these concerns are invoked more frequently than concerns about the way PGD is currently being used. These discourses have as their object the abstract concepts of “society” or “humanity.” This tendency to the abstract is dominant throughout the critical discourses and is a key point of difference between advocates and critics of PGD.

Critics (of PGD) do not directly engage with the specific circumstances of families seeking to prevent the birth of severely disabled or life-limited children. In contrast, proponents offered specific and persuasive “common-sense” arguments: to prevent suffering on behalf of the children involved; to extinguish the genetic transmission of disease; and to save the parents the anguish, cost and commitment of caring for such children (no proponents raised the cost to the community of caring for disabled children). Critics respond to these arguments by invoking a range of dystopic scenarios drawing on metaphors, and allusions to science fiction and Nazi eugenics. As Nerlich et al. Citation(2003) state, dystopic discourses or “discourses of fear … thrive on fictional references and threshold metaphors.”

The tendency by critics to locate PGD in the abstract produces some paradoxical effects. While critics emphasize the threat posed by PGD to our “humanity,” their failure to situate their arguments in the context of genuinely compelling family dilemmas serves to dehumanize their arguments. The contrast between dehumanized and de-contextualized critiques and the strongly humanized and contextualized arguments of proponents is evident in illustrations. Critical discussions are frequently accompanied by abstract illustrations such as photographs of anonymous naked babies, floating in the womb or in space, or photographs of cells, cell division or biopsy. In one extreme (and bizarre) example of dehumanization, a story critical of sex selection for social purposes is accompanied by a photo of a baby wombat (Gibson Citation1999, p. 3).

This can be contrasted with discussions emphasizing proponents' points of view which are typically accompanied by photos of real families, identified by name. Family members are photographed looking wistfully into the camera or into the distance in stories about trying to access PGD. Stories about PGD successes are accompanied by photographs of families playing in playgrounds or “savior-siblings” hugging their older, “saved” sibling. These photographs are the graphical equivalent of human interest stories, serving to make information about PGD more accessible and “real” to readers.

Slippery slope arguments, in addition to explicitly invoking the “slippery slope,” employ other metaphors such as a “step too far” (Nerlich et al. Citation2003, p. 476). These are collectively described as “threshold metaphors.” Although these metaphors are referencing a dystopic future, they serve to “contaminate” contemporary uses of PGD by implicating it in the “suddenness, progressiveness, irreversibility, and inevitability” of negative outcomes (Nerlich et al. Citation2003, pp. 476, 489), and are elements of a discursive strategy which posits PGD as inevitable:

… it was necessary to make a distinction between selection for the sex and selection for other characteristics such as height, hair colour and intelligence. This was dangerous and the first step to the creation of designer babies. (Herald Sun Citation2001b, p. 14)

In response, advocates directly challenged slippery slope arguments on the basis either that the technology for such usage does not exist or that societal restraints would prevent such misuse.

When we talk about qualities that humans may value such as strength, beauty, intelligence, athletic ability, musical ability and so forth, we are such a country mile from knowing anything about the complex interplay of genes that influence such traits that no serious scientist is thinking about applying gene therapy in a positive or negative eugenic fashion of a mad dictator … That's where you cross the line from future forecasting into straight science fiction – where you can go wherever you damn well want. (Birnbauer and Ewing Citation1993, p. 13)

Eugenics discourse in these data is situated within temporal references to past Nazi eugenics practices or to futuristic scenarios drawing on science fiction metaphors. These devices are used interchangeably and often in the same article.

Allusions to Nazi eugenics programs are common: “Learn from master race nightmares” (Preston Citation1998, p. 11). These are used as journalistic shorthand to represent dystopia, and are not situated in more detailed discussions of historical instances of eugenic practices enacted in Australia and elsewhere.

If a baby's sex comes to be regarded as an acceptable area of choice, it will be hard to argue against a range of other potential preferences: blonde hair, blue eyes, IQ or musicality for example. We do not want to goosestep into a eugenic future. (Age Citation1999, p. 18)

The prevalence of science fiction metaphors in discussions about human reproductive genetics and the broader genetics project is well documented (see, for example Van Dijck Citation1998, Petersen Citation2001, Nerlich et al. Citation2003, Petersen et al. Citation2005). These metaphors assist journalists to simplify complex issues by inviting readers to draw on familiar conceptual frameworks (Petersen et al. Citation2005). The most frequently invoked science fiction metaphor in these data is based on the movie Gattaca, in which a world of entrenched genetic discrimination means only genetically perfect individuals are permitted to reproduce:

With the development of techniques such as PGD, we could be well on our way to a future like that portrayed in Gattaca, where people will choose not only the sex of their child, but also its height, weight, intelligence level – even other characteristics we haven't imagined yet. (Nicholls Citation2001, p. 12)

Risk

Risk is omnipresent in these data and operates across all other discourses. As we have already seen, PGD is constituted in risk in a number of ways. First, it is risky to allow parents to make unregulated reproductive and genetic decisions. Secondly, natural conception risks conceiving a child affected by genetic disease. Finally, PGD represents a risk to our ontological status as humans in a dystopic future world.

Risk is expressed explicitly in discussions about having children in the context of a family history of genetic illness or recurrent miscarriage. Risk is often conveyed via the use of gambling metaphors such as “against the odds” (Davies Citation2003, p. 1) and “the luck of the draw” (Singer Citation1999, p. 20). Thus a couple who tired of delays in approving their request to use PGD had “taken a gamble and had a child themselves, risking having another child with the same disorder as their sick daughter” (Davies Citation2003, p. 1).

Risk is also expressed in terms of percentages or chances of possible outcomes. For example, in one paragraph risk is referred to as a percentage or chance eight times, concluding: “We cannot eliminate a life risk, we can only reduce it and I think couples should be allowed to have a child who starts life with the least risk and the best opportunities” (Taylor Citation2001a, pp. 1, 4). In this article, despite the caveat, the reader is left with the impression that risks thus quantified can be addressed and that PGD provides the best chance of doing so. The imperative to parental responsibility, evident in discourses of parental autonomy in these data as well as in other research (Roberts and Franklin Citation2004), demands that parents engage with these risks in order to fulfill their parental obligations.

Discursive strategies

Discursive strategies are the means by which a discourse is given power and meaning (Carabine Citation2001). They define and construct both the object and the subject of discourses (Carabine Citation2001). Two discursive strategies emerged from the data. The first relates to the epistemological differences inherent in participants' relationship to PGD. Participants' direct or indirect knowledge of PGD defined their own contribution to discussions about PGD, characterized the discourses in which they participated, and ultimately reshaped the terms of the debate over the period under analysis.

There is an “epistemic divide” (Maranta et al. Citation2003) between participants in these data; however, this divide is not aligned with the usual expert/lay segregation. All participants in this study have expert status. For some participants such as clinicians/scientists, this status can be attributed to their professional role or affiliation. For others, their expert status comes from personal experience of PGD, as in the case of consumers (Myskja Citation2007). For the purposes of media workers, who are themselves experts in media production, all participants are potential sources of expertise (Conrad Citation1999). The epistemic divide in these participants is directly aligned with their relationship to PGD. Thus those who have direct, personal experience of PGD claim a superior understanding of PGD and of its social implications. Those who do not have direct, personal experience of PGD may claim only an abstract, even theoretical understanding of PGD.

Participants draw on their direct knowledge of PGD to add veracity, power and meaning to their claims. Proponents contrast their direct experience (of PGD) with critics' lack of knowledge:

… Jansen has also witnessed – first hand in this room – the private pain of childless couples and the very personal reasons for their wanting a boy or a girl, perhaps in a way priests and some ethicists never do. (Callaghan Citation2002, p. 24)

It is plain to see that Dalrymple has never suffered the torment of disillusion, frustration, resentment and dissatisfaction that arises when choice is not available … he probably has had little direct experience of the torment he describes. (Powell Citation2000, p. 11)

Media workers capture the power inherent in this direct knowledge by framing articles about PGD as human interest stories. Human interest stories personalize abstract concepts and make them “more real” for readers (Petersen Citation2001). The unfolding of the story in installments (Petersen et al. Citation2005) which follow the family's ups and downs creates “dramatic tension” (Petersen et al. Citation2005, p. 351). Thus discussions of the family situation come to comprise a narrative, and the family members become characters in their own story. The use of “character sketches” emphasizing the goodness of the family “invite[s] the reader to empathise with their plight” (Petersen et al. Citation2005, p. 346).

When Christina was born, she had so many serious problems doctors offered to “let her go”. There were two things they did not count on: a mother's love and child's determination to live. (Riley Citation2002a, p. 3)

The effectiveness of “human interest stories” in making complex issues accessible is acknowledged by writers.

Stephen and Leanne gave a human face to the debate … there is no simple way of dealing with the question of PGD. It's not a case of good versus evil. It's much more complex than that. (Brown Citation2004, p. 3)

Thus the interests of media workers, in seeking to make PGD stories more interesting and accessible, and proponents, seeking to make arguments for PGD more “real” and less abstract, coincide and are served by the use of human interest stories which capture the personal experience of PGD.

The second discursive strategy identified in these data is the way in which PGD is constructed as inevitable. A number of devices are deployed which serve to reinforce the inevitability of PGD. It is presented as a series of breakthroughs and developments. Thus developments in the use of PGD are described as “a major breakthrough” (Riley Citation2002d, p. 17) and particular techniques are used “for the first time” (Whitworth Citation2000, p. 15). Scientists “don't believe anyone else can do it” (Kelly Citation2002, p. 1) and develop “world first” technology (Papadakis Citation2004b, p. 5). Specific uses of PGD are announced and re-announced over a period of years. Thus the use of PGD in cases of predisposition to cancer is trumpeted in 1995, 2001, 2003, 2006 and 2007 (Rogers Citation1995, p. 8, Taylor Citation2001a, p. 1, Cauchi and Baumont Citation2003, p. 3, Age Citation2006, p. 11, Australian Citation2007, p. 12). Writers claim geographic distinctions in these stories of breakthrough and this emphasizes the “spread” of PGD: “a controversial Australian-first test” (Taylor Citation2001a, p. 1).

Descriptions of PGD breakthroughs in particular, and stories about PGD generally, give rise to what Conrad (Citation1999, p. 232) describes as the “illusion of specific aetiology.” This is the tendency for disease, behavior and other characteristics such as physical appearance or sporting prowess to be attributed to one particular gene or genetic explanation. The implication of genes as the cause of particular conditions in turn implicates PGD in the cure, prevention or amelioration of these conditions. Thus, despite only a minor proportion of breast cancer being attributed to genetic predisposition: “Women prone to breast cancer will be able to use an IVF technique pioneered in Melbourne to prevent the risk being passed on to their daughters” (Papadakis Citation2004a, p. 4).

The illusion of specific etiology (Conrad Citation1999) and the neglect of non-genetic and multi-factorial explanations (Petersen Citation2001) are elements of genetic essentialism or reductionism. Another device which is implicated in genetic essentialism is anthropomorphism. In discussions of PGD, the technology itself is reified as having (either malevolent or beneficent) power without reference to human actors: “Should science reshape the human race?” (Dunn and Noble Citation2005, p. 13). The illusion of specific etiology and anthropomorphism essentialize and reify genes and genetic technologies as “responsible” for disease and cure.

The combined effect of devices emphasizing the “spread” of PGD, the role of genetics in “causing” disease and the reification of PGD is to suggest that the continued use and development of PGD is inevitable. For some participants, this produces fears that PGD is a “juggernaut” beyond human control (Hope Citation2002, p. 9). For others, debate about PGD becomes superfluous: “… the genie is out of the bottle. While ethicists, philosophers and others furrow their brows, the scientific community presses on” (Birnbauer and Ewing Citation1993, p. 13).

Changes over time

Early coverage of PGD is scant, with the first article appearing in 1992. By 1999, all newspapers in this study had published PGD stories. There is a dramatic increase in coverage in Victorian newspapers starting in 2001 and peaking in 2002–2003. This coincides with extended coverage of one family's attempts to access PGD to conceive a “savior sibling” for their dying daughter. While the Curkowskyjis are not the only family to be the subject of human interest stories, they received far more exposure than any other family represented in these data.

Early coverage of PGD is characterized by relative equity in the prominence given to critics and proponents of PGD. Proponents in this period are typically clinicians/scientists engaged in experimental or preliminary attempts at PGD. Many news stories, editorials and opinion pieces take a negative position. This pattern is evident until late 2001. The turning point in debates about PGD is apparent in the coverage of the Curkowskyj family. Coverage of PGD after the Curkowskyj family is markedly changed. The circumstances of individual families are more frequently profiled. News stories of all genres are less polemical and more likely to portray the immediate “good” of PGD as more compelling than the possible “bad” of PGD. News stories about “breakthroughs” in PGD use are more likely to describe the beneficial outcome of the technology rather than its possible misuse. Dystopia is invoked much less frequently and families using PGD are cast in a sympathetic light. Although the Herald Sun “took up” the Curkowskyj's cause and published the large majority of stories about the family, this shift in position is apparent in all the data.

Changes identified in these data can be understood in three ways. First, increases in the prevalence of articles about PGD can be understood to produce a greater knowledge of the existence and uses of PGD among readers. Secondly, changes in participant involvement, and the discursive strategies they employ, can be understood to indicate a shifting of power from participants who are critical of PGD towards participants who are supportive of PGD. Finally, changes in the prevalence of particular discourses suggest that dominant discourses have shifted from initially dystopic positions towards supportive positions drawing on concepts of parental choice and autonomy. The shift in the episteme (Hall Citation2001, p. 73) from indirect to direct knowledge of PGD is implicated in a shift in the epistemological construction of PGD.

Summary and conclusion

The key finding of this research is that participants drew on their direct knowledge or experience of PGD to give their claims power and meaning. Power operated through the deployment of epistemic expert knowledge. Proponents countered critics' concerns about the possible implications of PGD by drawing on the stories of “real” families. The interests of PGD proponents and of media workers coincide with the introduction of human interest stories which personalized the complex issues inherent in discussions about PGD.

Three groups of discourses were identified. Discourses of choice, commodification and autonomy surrounded parents. Discourses drawing on the dichotomous descriptors natural/unnatural, healthy/unhealthy, perfect/imperfect and normal/abnormal surrounded children associated with PGD. Dystopic discourses drew on slippery slopes metaphors and raised fears of eugenics.

Over time, dystopic discourses gave way to discourses which emphasized parental choice and autonomy. This shift was marked and exemplified in the extensive coverage of the Curkowskyj family. The epistemic divide between proponents and critics was vital in the transition from discourses of dystopia located in abstract, indirect knowledge, to discourses drawing on “real,” direct knowledge.

This research has identified an epistemic divide evident in participants' contributions and the salience of this discursive strategy to the changed terms of the debate about PGD. This finding establishes the basis for an understanding of how power and meaning are constituted in PGD and how participants' subject-positions are produced and privileged to shape debates about PGD. These findings directly respond to the suggestions for future research made by Condit Citation(1999).

This research also explicitly links contemporary social ideas about risk, responsibility, choice and autonomy identified in the theoretical literature to public discourses about PGD. Thus the proposed salience of these concepts and the utility of a Foucauldian theoretical, conceptual and methodological framework as suggested by Bunton and Peterson (2005) have been confirmed.

Acknowledgements

I would like to thank Dr Karen Willis and Dr Mark Stranger for their personal support and professional guidance during this research.

Notes

Human Fertilisation and Embryology Authority (the regulator of PGD in the UK).

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