Feminism confronts the genome: introduction

Introduction

Contemporary genetics has generated both pervasive cultural transformation and considerable hyperbole. The notion that life has become and is increasingly being rearticulated through genetification is evidenced amply by foundational transformations in everyday as well as professional vernaculars of kinship, health, personal and social identity, and in social–institutional practices crossing over the labours and economic futures of science and medicine, agriculture, pharmaceuticals, business marketing and policing, to name only a few. The ideological reach of genetics and the ideological work of the gene has been indisputably profound and extensive. Interestingly this has occurred notwithstanding that genes and the science of genetics, in material terms, have for the most part not delivered on the extravagant claims attributed to them. Genetics has not paid off in a transformation of curative medicine and genetic diagnostic innovations have had little appreciable impact on either disease prevention or care. The mapping of the human genome has not paid off significantly in the way of understandings, biological or social, of the human condition or the distinctions between or interrelatedness of species. Genetically modified foods have not redressed poverty or hunger; pharmacogenetics has not produced ‘smart’ drugs. So the spread of genetic ideas and investments in the possibilities of the gene would seem to owe much to their ‘fit’ with the times, to both comfortable common sense as well as uncomfortable points of social and cultural rupture, which genetification would seem to fill.

One of the key achievements of feminist scholarship, and one of the centrepoints of both feminist activism and feminist epistemology, has been the development of a critique of science. The advent of genetics and the purported genetics revolution has been articulated on a conceptual terrain in which critical ideas concerning reproductive rights, ecology, embodiment, bioethics, choice and agency have been reshaped by feminism, whether or not this is explicitly acknowledged by other primary definers. Thus the gene has offered both an arena for feminist critical engagement as well as a challenge to feminism and its already developed lines of critique and politics. In confronting the genome, in other words, feminism, of necessity, will confront itself.

This collection presents a set of exemplary case studies aiming to articulate different lines of feminist critical engagement with aspects of genetic science. Here, as we shall discuss in more detail below, the authors raise some of the most pressing points of rupture and discomfort emergent in the wider culture, as they are articulated in the context of the gene. These include notions of risk, choice, the obligations and ownership of gendered bodies, discourses of reproductive ‘fitness’ balanced against the institutional powers of science and medicine, and individualized notions of choice, rights and bodily autonomy. The papers in this collection thus bring together two key critical trajectories. First is a set of critical tools and frameworks that have developed over generations of feminist debate about science, medicine and technology as well as about gendered identity, embodiment, and reproductive and sexual freedom. Second is a tradition of reflexive epistemology in the defining of feminist politics itself. Specifically, the authors in this volume aim to interrogate not only aspects of the material terrain of the gene—its socio-political dimensions and material effects—but also, in so doing, to question and begin to understand the wider cultural romance with genetics. In pursuing such critique, they raise emergent points of tension for future articulation of a feminist politics of science.

Feminism and science

Before outlining in more detail the particular lines of focus for this collection, it is useful briefly to review some of the key aspects of feminist critical work in the general arena of science and medicine. This history both frames and resources the papers in this volume and, importantly, re-emerges here implicitly as a key terrain of dialogue concerning what feminism itself is, and the extent to which the advent of new social orderings, genetics being only one example, might render old wisdoms, if not obsolete, then at the least in need of revisioning.

There have been a number of waves in the history of modern anglophone feminist thought on science. The first wave, articulated in the late 19th century, argued for the extension of education and literacy as foundational to the emancipation of women. Scientific literacy in particular was advocated in response to the, at least ideologically, totalized exclusion of women from the project of rational modernism and the rights and privileges of citizenship that were directly tied to science and education. This became significantly complexified through the latter part of the second wave of feminism, the 1970s through the early 1990s as four traditions of critique emerged. These included, first, a more elaborated advocacy of women's relationship to science. In addition to continued aims to secure access by women to scientific education and professions, critical work also emerged to track and celebrate the heretofore under-recognized and ignored earlier contributions of women to science. A second line of critical work emerged in empiricist analytic frameworks which emphasized distinctions between good and bad science through interrogations of gender bias and gendered inequalities. The impact of social inequality on science and the role of misapplied science to the perpetuation of inequalities were key themes. Third, were the standpoint critiques, which argued that the foundational epistemologies of science, not just their misuse, reflected and were embedded in the patriarchal cultures that produced it. Standpoint theorists began to articulate a theory of located, contingent knowledges, while maintaining investments in certain gendered essentialisms, in particular the notion of epistemic privilege accruing to marginalized social groups, particularly women. Here questions were also raised about the possibility of a woman-centred, feminist science. Finally were the beginnings of a postmodern feminist critique, that questioned the dualistic essentialisms of early standpoint theories, and tried to reconcile (at times with somewhat naïve optimism) the contingent seductions and potentials of empowerment accruing to science (its role in fragmenting as well as consolidating forms of power) with the material inequalities that are embedded in it.1 This latter tendency became increasingly interested in the fractured character of social categories, power relations themselves, personal experience and in the work of identity, and embodied agency.

A number of key concepts and knowledges were powerfully consolidated in this second wave. Particularly important organizing concepts and points of rupture and tension included those concerning embodiment and bodily rights; and those surrounding questions of choice and agency. Complex debates emerged concerning the consequences of bodily subordination, for example through the legal and medicalized imposition of forced motherhood on the one hand and sterilization abuse on the other, through pervasive medicalization of female bodies and through the instrumental, objectifying relationships that accrue to technocratic ethical values. Also emergent in this context were heated contestations concerning the characterization of women's agency vis-à-vis powerful institutions of science and medicine. A third set of debates about the importance not only of access (or denials of access) to reproductive choice, but of developing a perspective of the character of choice that is consistent with a feminist ethic, became points of intense scrutiny and divergent opinion.

We are, arguably, in the midst of a third wave, both of feminism generally as well as of feminist politics of science specifically. This period has been characterized by what might be termed a revised standpoint arena of debate, in which emphases on location and contingency have been more persuasively articulated with questions of social context, the power relations of social categorization as well as institutional relations. There has been an increasing emphasis on theorizing heretofore under-examined links between cultural dimensions everyday as well as institutionalized meaning-making practices), inter/subjectivities and affect (the complex terrain of feeling). In this context, new questions have emerged concerning the powerful seductions of scientific innovations, genetics as a salient case study, the affective, intersubjective losses and phantasies they appeal to, and the ways in which these seductions reveal unconscious ruptures, tensions and normativities of a particular cultural context.2

Feminism confronts the genome

In this special issue, the contributing authors elaborate and apply a range of feminist theoretical tools for analyses of genetic science that derive from and develop on previous terms of feminist debate. They consider epistemological critiques of genetic determinism and see questions of ‘objective’ or ‘value free’ knowledge, institutional relations and lived experience of gender as all interconnected. They articulate and apply concepts that emerge from a range of interlinked feminist debates including: critiques of science and technology, the medical profession, reproductive technologies, the body, semiotics, ethics, philosophy, health and illness, environment, globalization, cultural representation, public policy, governance, the family and kinship. The contributors elaborate their case studies emerging from earlier critical work that aimed to understand women's distinctive relationships to genetics and to challenge all forms of institutionalized social inequalities. Together the authors contribute to the larger project of developing a critical foundation for the imagination of alternatives to what has been and is being produced.

The idea for this volume grew out of the Editors' own feminist interests in confronting genetics and initially we envisaged four main aims, reflecting what we see as feminist concerns. These included: (1) To bring together into one volume different strands of feminist thought including feminist social science (e.g. social policy, sociology, geography, environmental studies, psychology, etc.) and cultural studies and scientific perspectives on genetics; (2) To evaluate the challenge of the growing cultural and scientific hegemony of the gene and genetics to feminist theory and politics; (3) To consider the relationship between, indeed interdependence of, genetic discourses and popular culture; and (4) To explore the ways in which contemporary genetic science is both implicated in and challenges the production and perpetuation of gendered, classed, racialized and other social inequalities.

With these aims in mind, we asked authors to consider a series of key questions as they themselves confronted genomics: Is there a particular place for feminism in relation to genetics? Is an anti-oppressive genetics possible? Do feminists imagine alternatives to genetic science? How has the proliferation of genetics challenged feminist theory and social and cultural theory more widely? How do genetics link lived experience and institutional relations? What are the seductions of genetification? What investments do various social actors have in genetic discourse?

Briefly, let us see how each author in this volume attempts to address some of these questions. Rene Almeling's article brings out some of the sensitive links between contract, commerce and gift relationship in the process of donating eggs and sperm for commercial agencies in southern California, USA. We see how this process is structured differently for women and men in the medical market in genetics. This market is a social context in which technology and economic transactions are made. It becomes clear that in this market in assisted reproduction gendered processes are at work in the social production of altruism. While those working in commercial agencies may pressurize women donating their eggs to highlight altruism, and accept men seeking financial compensation when donating sperm, the picture is more complex. It is inexorably shaped by what agencies and their workers consider appropriate gendered responses as well as the workings of overall gendered social norms in both client recruitment and donors' desire to be selected.

Kelly Happe's article looks closely at what feminists mean by risk within the context of the commercialization of BRCA tests and prophylactic surgery as a prevention of cancer risk for women. Specifically, her focus is on the discourse of ovarian cancer, the role of oophorectomy as a prevention of ovarian cancer risk and how BRCA mutation functions essentially as a trope for disease. We see how researchers and clinicians understand risk and disease through embodied heredity; how the justifications for medical intervention are constructed and ultimately, how for environmental epidemiologists cancer penetrance can be linked to environmental conditions such as chemical pollution. Nevertheless, the routinization of BRCA tests and procedures becomes clear—a routinization embedded in medical discourse as acceptable practice before any objective tests are made with regard to clinical and public health importance. The bottom line is that for any ‘at risk’ woman, her fate is in her genes; BRCA becomes an independent risk factor; the risk factor becomes the disease and in the end, women's ‘risky’ body parts become disposable.

Joanna Badagliacco and Carey Ruiz show the links between poverty, gender and the state control of reproduction through the lens of a kind of modern day eugenics. They show the subtle ways in which the social reality of assisting women and families in the prevention of serious disease is separated from the social construction of ideas regarding who is fit to reproduce. In this process, women's behaviour becomes a survival strategy. Thus, we need to look critically not only at what happens to individual women but also at our social structures and ask, what is the appropriate or more important, socially just response to these women from human genome researchers?

Rachel Grob looks closely at the assumption surrounding newborn screening. At a state level, the medical market in genetics is driven by a series of assumptions based on the well-being of the child. To be successful, newborn screening must be cost effective, mandatory and uncomplicated or simple. Her article exposes the impact of these diagnostic systems on the experiences of parenting and specifically, what newborn screening means for mothers. This automatic classification of newborn babies has far-reaching consequences, altering in particular the experience of new motherhood.

Looking critically at the notion, risk, within the genetic counselling dyad in Germany, Silja Samerski explores how risk thinking and risk calculations not only stand in the way of medical treatment but also dehumanize patients in the genetic counselling environment. She offers a case study of pregnant Ms G, the baker, who wants to assess her risk of cystic fibrosis, given that one of her husband's deceased relatives had been affected. In the end, we see how Ms G's personal risk is built up in the consultation process and more importantly, how confusion, fear and an economy of risk enslavement intrude on her embodied consciousness.

It is clear that all of these authors in this volume present different types of feminisms. Almeling's is a type of resistance feminism, exposing how donating eggs and sperm donors is a gendered affair pressing donors into appropriate gender motivations—women should resist this process. Happe provides the ‘back story’ for a socialist feminist critique of genomics and contends that this position makes links between environmental factors and cancer and works towards changing the social environment rather than women's bodies. Badagliacco and Ruiz's social justice feminism allows us to see structural links in the state control of reproduction as a regulatory regime and the effect of this regime with its powerful genomic discourse on poor women in Appalachia. Grob and Samerski offer a type of debunking feminism. The former author exposes how the assumptions around newborn screening are flawed as well as misleading—not allowing a clear focus on what the experience of motherhood involves. The latter author exposes the linguistic superficiality and yet potent medical connotations of notions such as ‘genes’, ‘genetic information’ and ‘risk’—all notions which in genetic counselling contexts work to enslave women.

The five authors demonstrate different ways in which feminism confronts the genome and, taken together, we are able to see a number of themes emerging from this work.

First, we observe how ideologies confront/intersect with gender bias particularly in biomedicine with the result that a morality is imposed on bodies or body parts. Simply, we see a hierarchy of values imposed on eggs as womb products (Almeling), women's' bodies at risk of cancer (Happe), the potential babies of impoverished women (Badagliacco & Ruiz), diseases of the newborn (Grob) and ‘risky’ women's bodies (Samerski).

Secondly, the expanding commodification/commercialization within genetic markets is emphasized. Almeling focuses on the medical market in genetics, while Happe brings out the effects of commercialization on the bodies of women at risk of cancer. For Badagliacco and Ruiz, commodification becomes visible when we see how poor Appalachian women are asked not to reproduce. For example, who wants more degenerates? Or who wants those viewed as not productive in our capitalist societies? For Samerski, the fear of risk experienced by sick people, pregnant women and healthy people produces service consumers whose needs can never be met and are further enslaved to new risk calculations. For Grob, the emphasis is on the proliferation of selling genetic material at commercial agencies within a world shaped by technologized reproduction.

Thirdly, various discourses on risk emerge. All papers confront medical assumptions about risk which include aggressive treatment of risk and possible death (Happe); degenerates and the mentally ill (Badagliacco & Ruiz); birth and newborn screening (Grob); stages to becoming a donor (Almeling); and the fear of risk as a ‘phantom’ (Samerski).

The articles also raise significant questions for future theorization. For example, there is a tension in these articles between the individual and social and the personal and political. The genome project and those involved in it tend to focus more on the individual and deny that this tension exists. They want to change the person not the environment, which of course is not true of these authors. We as feminists entering into the world of genetics need not only to confront this tension but to make sure it becomes visible. Are there any feminist strategies we can use to ensure that these tensions are confronted both methodologically and theoretically in our work?

Finally, while the authors themselves do not directly examine the question of affect, we are perhaps moved emotionally by these articles. Emergent here are questions concerning what might be termed the feeling structures embedded in this arena—the question of embodied emotions, the question of attachment, not only to particular technologies, but to the meanings and fantasies that become part of the culture-industry context and effects of science. How do we understand the bases of investments in technologies that reveal themselves as deeply imbricated in social inequalities and significant losses as well as in powerful desires? All the articles grapple with different genetic-related experiences, and in so doing suggest the necessity of going further—of connecting these experiences to affective dimensions of life—to questions of the perceived seductiveness of particular technologies at particular moments in time and in particular locations. How do we effectively account for not only the complex and contingent positions of women in respect of genetics, but for the complex attachments, intersubjective relationships and forms of alienation that might be in play? Perhaps this is precisely the sort of politicization we as feminists can offer to the field of genomics today. Certainly feminist ethicists talk about the need for feminists to heal medicine. How can we begin to heal medicine in our engagement with the genetics discourse?

Conclusion

To confront the genome then is to confront the contradictions of contemporary politics and life itself.

What individuals actually face when they confront the genome has been mediated by biomedicine: they confront geneticized illness and they confront issues of procreation. The former are problems that—at least in theory—should equally affect men and women: breast cancer for women; prostate cancer for men; Alzheimer's and Huntington's to share. In reality, breast cancer became the disease that we were asked to think of as ‘genetic’, ‘running in families’, and to treat prophylactically with mastectomy. The fact that only a very small percentage of breast cancers are linked to the ‘breast cancer genes’ has gone unnoticed; the finding of ‘the gene for’ breast cancer has garnered much attention. There is no way to think about this without understanding the long and fraught relationship between women and medicine.

The issues of procreation are ones that women confront in a unique way, as mothers or on the path to motherhood. Foetuses and newborns are the most widely genetically screened population, and the consequences of that screening are felt most intensely by the women who are carrying and birthing them. The ability of genetic science to do far more predicting than curing has important consequences for pregnancy. Information arrives before or with a new baby, shaping the motherhood project. The individualizing of social problems places them squarely in the hands of pregnant women who must decide which babies they can afford—financially, emotionally, socially, politically—to bring forth and to raise.

To say that women ‘must decide’ is to open up the language most clearly associated with feminism in the public mind, the language of ‘choice’. Women who must decide something are women who have been given a choice—whether the decision is to terminate a much-wanted pregnancy because the child would have a very expensive condition and the parents do not have the money to take care of it properly, or the decision is to have a breast surgically removed because it might some day become cancerous. These are choices women do not necessarily experience as freeing and empowering, but yes, they are choices.

If we grapple with the genetic science itself, it offers what Steve Garlick calls ‘resources for thinking differently’ (unpublished observations). By moving to the molecular level, we can see the construction of sex as a category for thinking, and so potentially think differently about it. But that, unfortunately, is not what is actually happening. Again, to quote Garlick who carefully states that he is not arguing that genomics, cloning, biotechnology are inherently or necessarily good or bad, ‘there are clearly dangers involved with the capacity of techno science to facilitate capitalist penetration, control and commodification of the sub individual level of life, as well as the potential for reaffirming and reproducing sexual, race and socioeconomic class based inequalities’. Given on the one hand a potential for thinking differently, and on the other, the potential for strengthening existing practice, experience tells us to hope for the former but realistically expect a lot more of the latter.

Perhaps nowhere is this more clear than in the use of the simplest of genetic testing technologies: sex testing embryos and pre-embryos. While genomic thinking could be used to free us of the dualistic thinking that early sex science encouraged, in fact it is being used to reinforce it in the most basic of ways.

Much attention has been paid in recent years to the ‘missing’ girls in India and China—female newborns that were in some cases ‘unselected’ for implantation as embryos and more often aborted as foetuses. For the first several decades of genetic testing in pregnancy, American, British, Australian and European geneticists and physicians and bioethicists spoke strongly and clearly and as if in one voice in opposition to sex selection. We, they reassured all—and probably each other as well—use this technology of genetic and other testing for good medical reasons, to selectively abort for medical conditions. It is only ‘they’, people of other countries and places, and people who come as immigrants to our countries, who want sex selection. While Tay Sachs, neural tube defects, Downs Syndrome and genes for more nebulous conditions were carefully arrayed along the slippery slope, sex selection was relegated to the bottom of the great cliff at the end.

No more. Baylor College of Medicine in the United States has begun a study of the consequences of sex selection for what is being called ‘family balancing’, arranging for later children to be ‘opposite’ sex to the already-born children in the family. It's a clever turn of phrase: ‘matching’ has traditionally had far greater traction in the arena of family than has ‘balancing’, but in framing sex selection as a woman's ‘choice’ to ‘balance’ her family, opposition is pretty well silenced, made to sound ‘anti-choice’ or ‘anti-balance’. The study itself is limited in an interesting and important way: outcome will be defined at the level of the individual families, but the study is designed with just a few years of follow-up on the ‘social and health effects’. Are children chosen for their sex more bound by parental sex/gender-role expectations than other children? Early childhood is probably not the issue even for the psychological health of the child—adolescence and young adulthood would be of far more interest. How do families deal with gender bending behaviour, sexual experimentation, gender rebellion under these circumstances. Those questions will not be asked or answered. Nor will the more profound issue of the social consequences of this social experiment: how will sex selection shape society? How will it change demography, sex order in families, our very thinking about sex and gender as they become parental choices?

Results of the Baylor study will be on sex-selected children in early childhood, and almost certainly the children will be fine and the parents will be pleased, and the greased chute for sex selection has been opened. Balancing will give way to flat-out choice. Parents will be able to choose the sex of their children, using whatever technologies are available, from the simplest ultrasound and selective abortion, to pre-implantation genetic testing.

The potential for radical rethinking of the dichotomous sex categories goes by the wayside pretty quickly. ‘Choice’ will have entered another arena of women's lives, the choice of the sex of their children. All the data show us that as we introduce ‘choice’ into reproduction, individual women experience coercion as well as choice. Until the situation of women is changed, that will probably continue to be the case. When women are as socially, politically and economically as powerful as men, choices may indeed be experienced as liberating. At this point, that is not the case for the majority of women in the world.

Feminism, confronting the genome, confronts not only the position of women (transformed or maintained), but the future of feminism.

Notes

1. For extended discussion of different ears in feminist theoretical approaches to science, see for example: Rothman (1986); Stanworth (1987); Harding (1991); Kirkup and Smith Keller (1992); Haraway (1990); Steinberg (1999).

2. This third phase is immediate context and point of focus in Janes et al. (2000). See also Fox Keller and Longino (1996); Franklin (1997); Haraway (1997); Steinberg (1999); Ettorre (2002).