Feminist Bioethics

1. Origins of Feminist Bioethics

1.1 The Field of Bioethics

Both bioethics and second wave feminism gathered momentum in the 1960s, a pivotal era for social ferment. The bioethics movement was triggered by protest against such gross abuses of medical authority as the Nazi doctors' experiments on unconsenting concentration camp inmates and the Tuskegee Syphilis Study, a forty year “experiment” on poor black men who were misled into believing they were receiving therapy.[1] Over succeeding decades bioethics has grown into a highly professionalized interdisciplinary field that borrows from a cluster of interrelated areas of scholarship including philosophy, law, medicine, and the social and biological sciences. It has generated a massive literature ranging over a broad array of moral problems that arise within medical research, the health care professions, and the institutions that deliver heath care services. Its reach extends to philosophical and legal issues from the beginning to the end of life, to areas of biology and genetics on which medicine draws, and to research that seeks to expand the knowledge base of medicine. Over the years bioethicists have gained considerable prestige among health care professionals, other academics, and the general public. Some now serve on public policy panels and medical school faculties. Frequent conferences introduce newcomers to the field and disseminate recent scholarship among established bioethicists. Professional medical and allied health organizations now require bioethics training for certification and federal regulations in the U.S. and other countries now compel medical schools to include research ethics in their curricula. A few bioethicists have become media celebrities.

1.2 Criticisms of the Main Tendencies in Bioethics

However, as the field has professionalized, questions have arisen about its direction and focus. Despite its early attention to defense of the exploited, some critics discern an increasingly conservative bent. They note that as bioethics has become institutionalized, many of its practitioners are losing sight of its historical origins (Purdy 2001; Holmes 1999; Murray 2000). Though a growing number of women have entered the field, the upper reaches of the profession continue to be dominated by men who frame issues and formulate theory from the vantage point of the more advantaged members of society. Within the U.S., for instance, bioethics has largely adapted to the commodification of health care. Issues relating to the erosion of social programs — healthcare needs of marginalized groups, exclusion of increasing numbers from health care coverage, and cutbacks in health care funding to children and the poor — receive scant attention. Gender-specific disparities in health care research and therapy and the effects of racial and class differences on quality of care tend to be overlooked too.

Some critics associate these shortcomings with the abstract character of bioethical theory, the explanatory framework that draws on multiple strands of discourse to ground analysis of research and clinical practices. Feminists working in bioethics have called attention to several systemic weaknesses in the reigning framework. They point out that it overlooks key components of morality including the contexts that frame health care and the relational bonds that inform patient decision-making. Given this attenuated framework, it is easy to ignore particulars such as the unequal burden borne by women by virtue of their reproductive and nurturing roles and their disproportionate representation among the poor. Such contested features of the prevailing framework are often exported to developing regions of the world as their bioethicists seek a share in the prestige of high technology medicine (Salles & Bertomeu 2002).

Scrutiny of the discipline's partiality is due both to an increase in the number of feminists doing bioethics and to the influence of the women's health movement. In the early years of second wave feminism, activist feminists directed attention to areas of health care where women's interests were most severely neglected — access to birth control and abortion, pregnancy, and representations of female sexuality. Their tenacity kindled feminist bioethics scholarship and strengthened relationships with feminist ethics and social theory. Both scholarly groups share common vantage points. They take sex, gender, and other marginalizing characteristics as categories of analysis that are bound up with power relations across both public and private life.[2] Both emphasize the need for theoretical grounding not only to provide an explanatory framework but also to uncover directions for interventions to curtail oppressive practices. For instance, both groups have focused much attention on social constructions that establish and maintain gendered hierarchies. Theoretical analysis of these constructions is often used to critique medical practices that impose excessive burdens on women such as unnecessary surgeries and physician attitudes that stereotype women patients.

In the early 1990s interest in feminist bioethics escalated and it achieved recognition as a distinctive academic concentration that offers a sustained critique of inequities within health care systems and the partiality of the dominant bioethics framework. The range of feminist bioethics extends to pedagogy, the selection of topics addressed in major bioethics publications, and the explanatory grounding of clinical and research practices. Though feminists working in bioethics speak in many different voices, they share significant commonalities, both in their criticisms of dominant structures and in their efforts to build a more adequate framework that is responsive to the disparate situation of women and other groups whose health needs are under-represented. They direct attention to the hierarchical rankings that parcel people into groupings based on categories including sex, race, ethnicity, age, disability, and susceptibility to genetic disease and they uncover uses of these categories that perpetuate unjust practices. Some focus explicitly on one or another particular axis of oppression but all recognize their interconnectedness. The development of a distinctively feminist approach integrates insights of the women's health movement with cross-disciplinary analysis of structural relationships that divide and marginalize people and the perspectives of those who do not fit within the generalized abstract categories of the dominant bioethics framework. I now turn to more detailed discussion of the derivation and development of feminist bioethics.

1.3 Contributions from the Women's Health Movement

Women have a long history of interest in healthcare issues that predates the comparatively recent resurgence of feminism. This history antedates the seizure of control of the practices of midwifery and nursing by the medical profession.[3] The protest movements of the 1960s and increasing medicalization and commodification of women's bodily functions rekindled concern about the sexist bias in medical research and practice and fed a fledgling women's health movement. Public notice of the widespread exclusion of women from clinical trials increased its momentum. Feminists campaigned for increased breast cancer research, more convenient and cheaper contraceptive methods, research on the physiology of menopause, and elimination of unnecessary surgical interventions such as hysterectomies, Cesarean sections, and radical mastectomies. These campaigns were supported by several advocacy groups both in the U.S. and abroad including the Boston Women's Health Book Collective,[4] the National Women's Health Network, the National Black Women's Health Network, and the Women's Health Action Trust in New Zealand. They have struggled to raise public awareness of women's health issues, influence federal health policy, and act as a counter force to organized medicine and the drug industry. Finally, in belated response to almost two decades of struggle, the U.S. National Institutes of Health acknowledged the longstanding exclusion of women from clinical trials and the consequent dearth of research on diseases prevalent among women and differential drug effects. Then in 1990 NIH established an Office of Research on Women's Health and launched the Women's Health Initiative to redress gender inequities in medical research.

More recently, feminist activists have turned increasing attention to the health needs of women in developing countries. Several feminist advocacy groups including the Center for Health Law and Policy in the U.S. (recently renamed the Center for Reproductive Rights, see Other Internet Resources) have been extending their reach beyond the developed world to encourage recognition of health-related human rights cross-culturally. Their work is complemented by non-governmental organizations in numerous developing countries. Public interest groups, such as the Council for Responsible Genetics (see Other Internet Resources) which monitors the social impact of biotechnology, have also influenced orientations in feminist bioethics.

2. The Growth of Feminist Bioethics

Since the early 1970s feminist scholars had been complementing the agendas of activists and some have continued to work within both scholarly and activist communities. They documented the erosion of abortion access, presumably secured by the 1973 Roe v. Wade Supreme Court decision, and critiqued childbirth practices that sacrifice the interests of the birthing woman to the convenience of her obstetrician and the allegedly independent ”right” of her fetus. By the 1980s, scholarship featuring women-centered health issues was being widely circulated (e.g., Holmes, Hoskins, & Gross 1980, 1981; Corea 1985). A sprinkling of this effort was surfacing in bioethics journals (e.g., Whitbeck 1981; Young 1984). Feminist commentary on innovative reproductive interventions was burgeoning (e.g. Arditti, Klein & Minden 1984; Corea 1985; Stanworth 1987). Bioethics courses were proliferating and increasing the market for bioethics texts, but few included articles by feminists. Editors had a growing body of feminist literature on which to draw, but stereotypes persisted.

Feminist approaches were often mistakenly assumed to address “women's concerns” — a special ethics for women. Feminist contributions to the leading texts were confined principally to treatment of reproductive issues such as abortion, maternal-fetal relations, and reproductive technologies despite interconnections between these issues and more pervasive bioethical concerns such as: the limits of physician authority, conflicts between commercial interests and patient well being, the conflation of moral and medical values, and boundaries between disease and desire. To bring attention to disregard of feminist perspectives relating to the latter issues, Susan Wolf undertook a project at The Hastings Center which led to the anthology: Feminism and Bioethics: Beyond Reproduction (1996). A stinging attack on prevalent bioethical norms, this collection incorporates feminist perspectives on many issues long neglected in standard course texts including the widespread exclusion of women as subjects of medical research, the abstract individualistic conception of personal autonomy pervading bioethical thought and the stigmatizing portrayal of HIV positive women. Through such efforts, the identification of feminist perspectives with reproductive issues began to loosen. Even feminist critiques of bioethical theory achieved some recognition in bioethics texts though they tended to be classified among ”alternative” approaches (along with communitarianism, casuistry, and the ethics of care). Presently, few texts give proportional prominence to the health care priorities of women and other underserved groups.[5] Prestige continues to attach principally to a narrowly defined range of topics and theory-building approaches that rely on abstractly formulated universal norms.

In an effort to provide a congenial home for feminists working in marginalized areas of bioethics, to encourage international cross-fertilization, and to influence the agenda of mainstream bioethics, the International Network on Feminist Approaches to Bioethics (FAB) was founded in 1993 (see Other Internet Resources). FAB aims to foster development of a more inclusive theory of bioethics at both the academic and the grassroots levels. Three goals have been central: extension of bioethical theory to integrate concerns about race, class, ethnicity and gender; reexamination of the principles of bioethics; and creation of new strategies and methodologies that interject the standpoints of socially marginalized people. The articulation of these objectives represents an effort to systematize prevailing commonalities among feminists working in the field and stimulate further collaborative work. FAB's central focus includes adaptation of the theoretical grounding of bioethics to more fully reflect key components of moral life that structure physician/patient and researcher/subject relationships, power differences that mark these relationships, and cross-cultural perspectives on bioethical issues that reflect intersections between specific technologies and the social, political and economic structures in which they are embodied.

The founding of FAB coincided with the appearance of a critical mass of feminist bioethics scholarship. In 1992 a collection of articles previously published in the journal Hypatia was brought out as Feminist Perspectives in Medical Ethics (Holmes & Purdy, 1992). Susan Sherwin published No Longer Patient: Feminist Ethics and Health Care, the first book-length treatment of feminist bioethical theory (1992). In this groundbreaking work, Sherwin expanded feminist bioethics in new directions that circumvent the prevalent theoretical approaches of the dominant bioethics framework and demonstrate its shortcomings. A major thread throughout her book is the ethical imperative that bioethicists recognize oppressive social practices and devise strategies to remedy them.

Volumes by Susan Bordo (1992) and Mary Mahowald (1993) critiqued medical and cultural attitudes toward women's bodies. Susan Wendell's The Rejected Body (1996) pressed this theme further integrating into discussions of bodily life the experience of disabled people. She shows how cultural attitudes toward the body contribute to the stigma of disability and resistance to accepting the body's inevitable weaknesses.

Soon bioethics think tanks and journals began to recognize feminist approaches. Several journals featured special issues by feminist scholars spanning a cluster of topics including AIDS, reconfiguration of the principle of autonomy, gender issues in psychiatry, and global dimensions of feminist bioethics. As an increasing diversity of reproductive innovations flooded the medical marketplace, feminists continued to reassess their social impact (Overall 1993; Holmes 1994; Callahan 1993, 1995; Murphy 1995; Purdy 1996; Gupta 2000). Bioethics conferences in a number of countries began to schedule sessions that explicitly addressed feminist bioethics and more feminists were being included in the general program. In 1994, bioethicists in China held the first of a series of conferences featuring feminist approaches.

However, the dearth of feminist representation on governmental panels formulating public policy, particularly in English speaking countries, changed remarkably little. A group of Canadian feminists has addressed this omission from the perspective of their own efforts to influence government policy. In an illuminating collection of essays, they relate their frustrations following the completion of projects funded by Canadian governmental agencies. They enumerate obstacles to implementation of published reports which hinder policy reforms and amended practices (Sherwin et al. 1998).

Feminist bioethicists have recently focused increasing attention on global issues. Collaboration between feminists in industrialized and developing countries has led to the publication of two anthologies based on papers from international FAB conferences (Donchin & Purdy 1999; Tong et al. 2001). A third examining human rights issues is about to appear (Tong, Donchin & Dodds 2004). The initial volume calls attention to the traditional mind/body dualism, specifically its tendency to de-legitimate women's cognitive and emotional lives by focusing only on their symbolic links with the body. Political dimensions of this problem extend to formerly Socialist countries that are now appropriating Western technological practices that view women's bodies as (often faulty) reproductive machines (Jones 1999). Contributors to the second volume seek to transcend the usual dichotomies dividing the contemporary world into developed/ developing economies and technological/ nontechnological societies to address a broad array of concerns that pave new ground at the intersection between feminism and global concerns. Several themes predominate. Some contributors focus on the globalization of issues stemming from the proliferation of reproductive technologies and fetal visualizing techniques, particularly their tendency to focus disproportionate attention on the human embryo ignoring the needs of impoverished mothers and children. Both Susan Sherwin (Sherwin 2001) and Rosemarie Tong (2001) point to tensions between specific cultural practices and features of common humanity that override geographical, cultural, and racial difference, most conspicuously: childbirth, illness, disability, and death. However, Sherwin cautions that since universal value commitments have emerged out of particular historical and geographical locations, too exclusive a focus on global features of the human condition can obscure operations of power relations that vary from locality to locality.

All three volumes are the fruit of collaboration between feminist bioethicists in the advanced industrialized countries and their colleagues in transitional areas of the world. They document the ways dominant Western technological practices are crossing geographical boundaries, influencing developing economies, and mimicking morally dubious western technological practices that divert scarce resources from efforts to reign in preventable morbidity and mortality and extend basic health care services. Of particular concern are the problematic moral consequences for the lives of those who lack the power to alter externally imposed conditions that control their lives.

This work overlaps and is complemented by other recent feminist contributions to the bioethical literature. A particularly active area of interest concerns the rapid pace of genetic research and the need to counterbalance the effusive claims of enthusiasts who extol the rosy future increasing genetic knowledge will bring to humankind. The scope of their interest ranges over a broad array of issues including sex selection techniques, genetic ties to children, disabilities, genetic testing and screening, abortion, discrimination in health insurance and employment, and human cloning (e.g. Rothman 1998, 2001; Mahowald 2000; Davis 2001; Parker & Ankeny 2002). Of immediate concern are the burdens genetic interventions impose on women to utilize prenatal techniques so they produce only “perfect” children and intensified stigma on future children who happen to be born with disabilities. Development of genetic enhancement techniques would magnify this concern and pose an even greater threat to social equality. Many of these issues overlap concerns feminists have voiced in other contexts such as the impact of caregiving responsibilities on the caregiver and the impact of economic policies on marginalized groups (such as blacks with sickle cell disease). They offer a number of novel proposals to minimize the threat of intensified inequalities such as including within policy-making bodies representatives of affected groups, such as people living with disabilities and breast cancer survivors.

2.1 Feminist Perspectives on Bioethical Theory

As the preceding discussion illustrates, feminists have participated in scholarly discussion of virtually all the major topics in bioethics. Their contributions are distinctive insofar as treatment of these topics is grounded in feminist scholarship that draws on background norms and conditions that shape available health options. Virtually all feminists have doubts about the emphasis on abstract universal norms and the framework of allegedly universal moral principles that have dominated bioethical theory. The conception of the generic subject implicit in that theory privileges the perspective of an elite, mostly male group. Feminists point out that this emphasis tends to justify the prevailing status quo inhibiting consideration of social change. They also criticize the tendency of the dominant framework to interpret harms suffered by oppressed groups as harms solely to generic individuals who have been stripped of their particularity. Susan Wolf notes that even the impoverished black men in the Tuskegee syphilis study or Nazi concentration camp inmates have been treated abstractly, without taking adequate account of the particular conditions that governed their lives (1996).

Search for a more compatible moral grounding for bioethics has led feminist scholars in several directions. A few favor dispensing with principles entirely and reconstituting bioethics through narrative case-specific interpretation along the lines pioneered by followers of Nel Noddings (1984). Some have serious reservations about Noddings' formulation of care ethics, but are convinced nonetheless that the narrative approach has useful bioethical applications (e.g. Nelson 2001). Others, such as Mary Rawlinson (2001), have taken their cues from Continental feminist thought that has vividly exposed the masculine markings of the supposedly generic human subject and identified it as a source of cultural and individual sickness. Another group has ventured into post-structuralist and post-modern theory to discredit the claims of universality and build a more particularist feminist framework (Shildrick 1997, Shildrick & Mykitiuk 2005). However, a growing contingent of feminists think a framework that incorporates universal principles should constitute one dimension of an adequate bioethical theory providing its principles are formulated in nonexclusionary terms that reflect the relational context of individual lives. They draw on two themes in feminist theory. The first stems from attention to an ethics of care and the second from reflections on the sources of women's subordination in patterns of domination and oppression.

Out of these controversies a new perspective has been emerging. It draws on several tendencies within feminist thought, particularly debates about care and justice. Springing from the work of Carol Gilligan (1982) and the proliferation of scholarship stimulated by her insights, care theorists have emphasized patterns of reasoning allegedly characteristic of women — caring, relationships, and responsibilities — and contrasted them with modes of reasoning that privilege justice and rights which Gilligan and her followers have taken to be more characteristic of men. Care theorists distrust traditional moral principles and press for an ethics that stresses alternative values such as love, care, and responsibility. They emphasize the suitability of such values for capturing contextual subtleties and relational bonds that are overlooked within principle-oriented frameworks.

But others have voiced doubts about the adaptability of a care ethic to some of the concerns of feminist bioethics. Susan Sherwin notes connections between care ethics and a long academic tradition that views women as having a distinctively different character than men. She points out that this orientation lacks a distinctively political perspective toward patterns of domination and oppression that affect women (1992, 42-49). Feminists who share Sherwin's concern do not wholly reject an ethics that encompasses caring relationships but stress the need to complement it within a framework that includes considerations of justice, suitably reconfigured to circumvent the tendency to lapse into abstract generalization that is so pronounced within the dominant framework.

Over the past two decades feminist philosophers have been making notable refinements in care ethics and integrating its key concerns into a more comprehensive moral framework that gives serious attention to issues of justice. Works by Sara Ruddick (1989), Virginia Held (1993, 1995) and others have had a notable influence on feminist bioethics. Their perspectives exemplify the tendency among feminist theorists to extend features of a care ethic beyond resolution of interpersonal problems to the social and political issues that require more generalized principled treatment. Building on this base Rosemarie Tong makes a forceful case for incorporating features of a care ethic into bioethical theory to challenge the structures and systems that perpetuate women's disempowerment (1997). For, she notes, justice and care are closely intertwined on a practical level. Though far greater prestige attaches to high-tech medicine than the mundane tasks of providing quality care to the sick and infirm, caring values count heavily in providing high caliber healthcare. Yet, as Virginia Warren points out, the caring tasks of medicine have been stigmatized as “housekeeping issues” that garner little interest and even less remuneration while “crisis issues” dominate attention and reward their practitioners handsomely (1992).

Recent work has sought to bring increased attention to this situation, particularly insofar as it affects those who require extended care. Both Jennifer Parks' No Place Like Home: Feminist Ethics and Home Health Care (2003) and Rosalind Ladd's anthology, Ethical Issues in Home Health Care (2002) address an issue of alarming proportions for the welfare of the aging and home-bound. They bring to their task much recent feminist work on justice and care. Several other feminist bioethicists have joined the growing company of disability scholars who adapt features of care ethics conjoined with issues of justice to a range of themes intersecting disability (e.g., Parens & Asch 2000; Silvers, Wasserman and Mahowald 1999).

Subsequent work branches off in a number of directions. One theme combines a care perspective with virtue theory. Ruth Groenhout is convinced that this way of thinking about an ethics of care provides a fruitful theoretical perspective for bioethical issues (2004). She teases out structural similarities between the two orientations that support a more comprehensive feminist bioethics: both emphasize the holistic nature of human persons, their particular social contexts, the centrality of emotional responses in ethical reasoning, and refusal to judge actions apart from the lived narrative that confers meaning on them. Of course, care ethics includes features seldom found in virtue ethics, such as commitment to women's full membership in the moral community. Together these perspectives require the theorist to take social location and imbalances of power seriously for both affect the provision of care in crucial ways. Groenhout draws examples from several fields including uses of new reproductive technologies noting that adoption of care theory would require consideration of many factors beyond the desires of the patient. These would include costs and benefits to everyone affected by the treatment, the impact of these services on other health care needs, and whether use of these technologies is likely to contribute to commodification of children and women's bodies.

Another related stream of feminist theorizing emphasizes the advantages of retaining a conception of autonomy within bioethics, providing it is framed more robustly than the narrow conception common in the bioethics literature. Susan Sherwin and Susan Dodds point out several respects in which this conception fails to fit good medical practice. First, the traditional view of autonomy directs no attention to the details of personal experience, so individuals are treated as interchangeable. Sherwin emphasizes that “if we are to effectively address these concerns, we need to move away from the familiar Western understanding of autonomy as self-defining, self-interested, and self-protecting, as if the self were simply some special kind of property to be preserved” (1998, 35). Susan Dodds points more specifically to a consequence of the tendency among bioethicists and physicians to reduce autonomy to informed consent and restrict its exercise in medical practice to a patient's selection of choices from a restricted set of options (2000). This formulation of the principle fails to take adequate account of background conditions that patients bring to their medical experience and is insensitive to institutional power relationships that influence their health care options. For both available options and patient preferences are constrained by multiple pressures including physician authority, power hierarchies within families, economy inequities, and other inequitable social arrangements. Once the influence of such constraints is recognized, the need for a more nuanced conception of autonomy becomes obvious.[6]

Feminists have suggested a number of ways that autonomy might be reconceived to give fuller consideration to the agency of patients. Virginia Warren argues that the concept needs to be supplemented by an ethics of empowerment so, rather than relying on one's physician as the primary source of health care information, patients be given access to a far broader informational network that draws on the work of feminist activists (2001). Others favor overhauling the conception more extensively and tailoring other leading bioethical principles accordingly. They emphasize the importance of encouraging patient development of autonomy capacities to balance disparities in education and prestige that distort physician-patient communication. For autonomy ought not be viewed only as a proficiency possessed by all competent adults but also as an aspirational achievement that requires moral development, social cooperation, and supportive institutions.[7] An adequate conception would make visible the ways social norms and pressures condition the choices offered to patients and stress the obligations of health care providers to actively support patient autonomy.

This perspective shares with care theory the conviction that human agents are not fundamentally single-minded, rational, self-interested choice-makers but social beings whose selfhood is constituted and maintained within overlapping relationships and communities. Recognizing the complexity of connection among individuals, their social milieu and their cultural matrix, some feminists are now calling for adoption of a relational model of autonomy that stresses the web of interconnected (and sometimes conflicting) relationships that affect individuality. Oppressive social environments, illness or trauma can easily impair autonomy. In an insightful book, Aftermath: Violence and the Remaking of the Self, Susan Brison, drawing on her own rape experience, views the loss of connection experienced by trauma survivors as a serious threat to their autonomous selfhood (2001). Like trauma, serious illness endangers these interconnections and thwarts autonomous pursuits. The body one has trusted to pursue one's plans and projects is shown to be vulnerable, fragile, and unprotected (Donchin 2000).

This direction of inquiry has been resourcefully extended by Carolyn McLeod (2002). She elucidates a novel conception of self-trust within a feminist theoretical framework, thereby adding a new dimension to projects that aim to reframe the dominant conception of personal autonomy in a way that illuminates its relational character (2002). Drawing her illustrations principally from reproductive contexts including miscarriage, infertility treatment and prenatal diagnosis, she shows how encounters with health care providers may undermine women's self-trust, thereby threatening their autonomy. She suggests how providers might reduce barriers to self-trust and why respect for patient autonomy obligates them to be attentive to their power to influence the trust of patients in their own capacities. Her analysis and suggestive use of case histories invites extension of her conceptual innovations to further health care contexts.

3. The Expanding Landscape

Feminist bioethicists have brought new issues and fresh perspectives to bioethics. They share feminism's common commitment to rectifying systemic injustices. They look toward a future when feminist theorizing has a more profound influence on bioethics, when the voices of the socially marginalized are fully recognized, and the needs of all social groups are incorporated into a system of healthcare justice that is responsive to the diverse needs of humans across the globe. As work in feminist bioethics coalesces several key objectives are becoming discernible.