We take great pleasure in introducing this issue of IJFAB, which is based on papers presented at the Sixth International Congress of Feminist Approaches to Bioethics (FAB). The theme of our 2008 congress, in Rijeka, Croatia, was "Voice, Power, and Responsibility in Health Care." The congress offered two and a half days of stimulating thought, fresh insights, vigorous debate, and new perspectives on issues in bioethics. The papers in this issue reflect the current strength and diversity of feminist bioethics. The issue includes articles from eminent colleagues, together with papers from younger scholars whose strong contributions indicate very promising futures.
The FAB biennial congress has played a significant role in the development of feminist bioethics. The first FAB congress in San Francisco in 1996 led to the publication of Embodying Bioethics: Recent Feminist Advances, edited by Anne Donchin and Laura Purdy. Several other collections based on papers from FAB congresses, including a special issue of Bioethics, provide critical resources for teaching and scholarship. In 2007, FAB established IJFAB to advance feminist approaches in bioethics. Beginning with this issue, every fourth issue of IJFAB will be based on FAB's biennial congress.
The field of feminist bioethics has expanded far beyond an early focus on issues that primarily affect women. This volume includes papers that elegantly [End Page 1] and successfully use feminist theory to investigate topics that are very much in the mainstream of bioethics (e.g., conflicts of interest or evidence-based medicine), as well as papers on topics that have particular resonance for women (e.g., care of the elderly and hybrid embryos). As we write this, the World Health Organization has declared the emerging swine flu to be a level-4 pandemic. If a full-blown global pandemic ensues, health care systems and societies around the world will be challenged to find just and ethical ways to respond. Several of the themes in this issue are relevant here. Who will care for those affected, and who will receive care? It is unlikely that existing services will be able to care for all who become ill. How will resources be distributed, and will those who already are vulnerable be further disenfranchised? What notions of duty and responsibility will be at play, and on what basis will health care professionals advise their patients in this situation of uncertainty? The first congress issue of IJFAB demonstrates clearly that feminist bioethics plays a crucial role in addressing these and other questions in the potentially difficult times ahead.
The three opening papers of the issue focus on ethical issues in providing health or home care for marginalized people, especially the elderly and immigrants. Rosemarie Tong's paper analyzes the growing need for elder care worldwide as life expectancies increase in most parts of the world. She explains that it would be unrealistic to expect all governments or all elderly people needing care to provide for this care, financially or otherwise. Some of the burden will inevitably fall on family members; and until our collective imaginations about care work change, it will fall disproportionately on female family members. With the need for elder care increasing, now more than ever, it is crucial that nations worldwide "explode the gender system" that forces women "to do the bulk of care work, all too often to their detriment" (Tong).
Monique Lanoix focuses on the care provided by non-professionals paid to help adults who cannot care for themselves. Because most of the people who do this sort of work are women, we assume that they can easily provide the care needed because care supposedly comes naturally to them as women. Lanoix demonstrates why this assumption, along with others that underlie the current structure of paid care labor in North America, is morally problematic. The care worker repeatedly faces morally ambiguous and compromising situations in her work that inhibit the care she can provide.
The focus for Anna Gotlib is on what she calls the "double marginalization" of immigrant patients with serious illness who seek treatment within the medical system of the United States. These patients are marginalized by their [End Page 2] immigrant status and experience, as well as by their illness. Gotlib argues that the type of medicine they require, but generally do not receive in the United States, is "narrative medicine." She presents cases about Russian immigrant women who are ill and their care-giving daughters to illustrate the importance of medical professionals knowing the stories of their patients' lives.
A second set of three papers directly concern public policy and health care or health care research. Françoise Baylis writes of a possible future in which women with mitochondrial DNA (mtDNA) mutations can choose whether to reproduce using human/animal embryos in an effort to avoid transmitting mitochondrial disease to their offspring. Should we allow for such a future? Baylis argues "no"; on grounds of social justice, we should not allow it because devoting scarce resources to develop techniques to permit a small number of women to conceive genetically related offspring is unjust when so many women around the world receive abysmal reproductive health care. Research into these techniques could be permissible were it not for these social justice concerns (i.e., because reproducing using human/animal embryos may not be inherently objectionable). But these concerns are serious enough to warrant prohibiting the research according to Baylis.
Jocelyn Downie's paper exposes the effects of funding on bioethics research. She argues that the nature, source, and structure of the funding available for bioethics research has a number of possible harmful consequences including: loss of independence, narrowing of the research agenda, changing the nature of bioethics research methods and sites of publication, and lack of support for important but underfunded questions. Downie challenges all bioethics researchers to develop higher standards of practice lest we lose our credibility and, with it, our capacity to critique biomedicine in important areas. Importantly, Downie includes employment practices in her critique. The trend among academic institutions toward temporary, part-time, teaching staff was reinforced by our observations at the congress of many colleagues who lack stable employment and a secure step on the career ladder.
Meredith Schwartz draws out connections between responsibility and trust in public health policy. Issues of responsibility have loomed large in the literature about health inequities as explanations are sought for the well-known gradient in health status that occurs between those who are better off and those who are worse off. Are those with worse health somehow responsible for their ill health due to their own behaviors? If so, what do we mean by "responsible" in unfavorable social circumstances including privation and discrimination? Using a recent Medicaid Reform plan from West Virginia as a case study, Schwartz argues that health policy relies upon an authoritative model of responsibility, [End Page 3] in which experts (policy makers) identify salient health-related responsibilities that are assigned to citizens who are then rewarded or penalized in accordance with how they meet these responsibilities. Schwartz criticizes this approach because it disempowers many citizens and undermines or fails to build their trust in health-care professionals who are charged with monitoring their compliance. It can also create or contribute to a general climate of distrust. These problems are particularly acute for citizens from vulnerable populations.
The final two papers bring feminist insights to bear on evidence-based medicine (EBM). There has been a steady critique of EBM since its emergence in the 1990s as a highly influential template for clinical practice. Despite a plethora of literature, only a few contributions develop a specifically feminist perspective. Robyn Bluhm argues that comprehensive understandings of autonomy, such as those developed by feminist scholars, show that providing patients with "more and better information" not only fails to support their autonomy, but can also constrain it. Accounts of decision making within guides to EBM rely on an impoverished view of autonomy, according to Bluhm. She reminds us of the importance of time and experience in making decisions; evidence-based information is only part of the picture. But she also insists that the EBM approach is fundamentally mistaken in equating autonomy with informed choice about treatment options. Importantly, Bluhm goes beyond theoretical concerns about autonomy to discuss the ongoing work required to clarify the relationship between health and self-governance and the scope of medical responsibility for patient autonomy.
The critique of EBM continues with Kirstin Borgerson's paper in which she investigates an emerging approach to EBM characterized by the use of increasingly abstract summaries (known as the "4S" approach). This approach is intended to assist busy clinicians by eliminating some of the hard work of reading and reviewing evidence. However, as Borgerson argues, this approach reinforces and extends the already unjustified evidence hierarchy, while wasting undervalued sources of evidence and ignoring important contextual features. Feminist epistemology provides an effective response to the 4S approach because its norms address specific shortcomings of EBM. Borgerson's paper demonstrates yet again why feminist theory is essential to bioethics.
We look forward to seeing you all at our next FAB congress in Singapore, in July 2010.
Wendy Rogers is professor of clinical ethics in the Department of Philosophy and Australian School of Advanced Medicine at Macquarie University. She is a chief investigator on several Australian Research Council funded projects and has served on the National Health and Medical Research Council (NHMRC)'s Australian Health Ethics Committee. Her main research interests are research ethics, public health ethics, and feminist ethics.
Carolyn McLeod is associate professor and graduate chair in the Department of Philosophy at the University of Western, Ontario. Her book, Self-Trust and Reproductive Autonomy (MIT Press, 2002), is representative of her research interests in general, covering areas at the intersection of reproductive ethics, philosophical moral psychology, and feminist theory.