Putting the ethical tools of philosophy to work, Ellen K. Feder seeks to clarify how we should understand "the problem" of intersex. Adults often report that medical interventions they underwent as children to "correct" atypical sex anatomies caused them physical and psychological harm. Proposing a philosophical framework for the treatment of children with intersex conditions—one that acknowledges the intertwined identities of parents, children, and their doctors—Feder presents a persuasive moral argument for collective responsibility to these children and (...) their families. (shrink)

Apology is arguably the central act of the reparative work required after wrongdoing. Claudia Card’s (1940-2015) analysis of complicity in collectively perpetrated evils moves one to ask whether apology ought to be requested of persons culpably complicit in institutional evils. To better appreciate the benefits of and barriers to apologies offered by culpably complicit wrongdoers, this article examines doctors’ complicity in a practice that meets Card’s definition of an evil, namely, the non-medically necessary, nonconsensual “normalizing” interventions performed on babies born (...) with intersex anatomies. It argues that in this instance, the complicity of doctors is culpable on Card’s terms, and that their culpable complicity grounds rightful demands for them to apologize. (shrink)

Ellen Feder's monograph is an attempt to think about the categories of race and gender together. She explains and then employs some critical tools derived from Foucault, in order to advance her main argument: that the institution of the family is the locus of the production of gender and race, and that gender is best understood as a function of a "disciplinary" power that operates within the family, while race is the function of a "regulatory" power acting upon (...) the family from outside. Her interdisciplinary work will be of interest to feminist philosophers and theorists because it plays into a recent expansion of interest in the family, as well as to literary scholars of Foucault, to scholars of race and race theory, and to other feminist scholars in political science, sociology, anthropology, and cultural studies. (shrink)

Cheryl Chase has argued that “the problem” of intersex is one of “stigma and trauma, not gender,” as those focused on medical management would have it. Despite frequent references to shame in the critical literature, there has been surprisingly little analysis of shame, or of the disgust that provokes it. This paper investigates the function of disgust in the medical management of intersex and seeks to understand the consequences—material and moral—with respect to the shame it provokes.Conventional ethical approaches may not (...) provide quite the right tools to consider this affective dimension of the medical management of intersex, but we find in Nietzsche's Genealogy of Morality a framework that allows us a profound appreciation of its moral significance (Nietzsche 1887/1998). Understanding doctors' disgust—and the disgust that they promote in parents of those born with atypical anatomies—as a contemporary expression of ressentiment directs us to not focus on the bodies of those born with intersex conditions, which have been the privileged objects of attention both in medical practice and in criticisms of it, but moves us to consider instead the bodies of those whose responses constitute the motivating force for normalizing practices in the first place. (shrink)

Ladelle McWhorter's Bodies and Pleasures provides an unusual and important reading of Michel Foucault's later work. This response is an effort to introduce McWhorter's project and to describe the challenge it presents to engage in askesis, the transformative exercise of thinking, which McWhorter's work itself exemplifies.

The first-ever compilation of articles that highlights the intersection of Derridean and feminist theories--a work that represents the extensive and diverse response feminist theorists have had to Derrida, particularly to the issues of gender, identity, and the construction of the subject.

: Even as feminist analyses have contributed in important ways to discussions of how gender is raced and race is gendered, there has been little in the way of comparative analysis of the specific mechanisms that are at work in the production of each. Feder argues that in Michel Foucault's analytics of power we find tools to understand the reproduction of whiteness as a complex interaction of distinctive expressions of power associated with these categories of difference.

Katrina Karkazis, Fixing sex: Intersex, medical authority, and lived experience, Durham, N.C.: Duke University Press, 2008, reviewed by Ellen K. Feder Elizabeth Reis, Bodies in doubt: An American history of intersex, Baltimore: Johns Hopkins University Press, 2009, reviewed by Ellen K. Feder.

Even as feminist analyses have contributed in important ways to discussions of how gender is raced and race is gendered, there has been little in the way of comparative analysis of the specific mechanisms that are at work in the production of each. Feder argues that in Michel Foucault's analytics of power we find tools to understand the reproduction of whiteness as a complex interaction of distinctive expressions of power associated with these categories of difference.

The recent publication of Michel Foucault’s 1974-75 and 1975-76 lectures at the Collège de France provides an opportunity to reconsider the potential contribution of Foucault’s “analytics” of power for understanding the contemporary operation of race. Unlike the deployment of gender, which, I argue here, is best understood as a function of “disciplinary” power, the deployment of race is primarily a function of “biopower,” an expression of power that is bound up with the state apparatus. The announcement of the federal Violence (...) Initiative in the 1990s provides an illuminating example of the operation of this power, and the chiasmic function of discourse that Foucault famously termed “power/knowledge.”. (shrink)

Ethical questions in medicine tend to emphasize the intentions of researchers and physicians. Questions concerning harm have more often been addressed in terms of legal culpability. This commentary proposes that normalizing interventions for atypical sex anatomies, both historical and ongoing, be recognized as a kind of medical error, and that attention be focused not simply on prevention, but on repair.

Intersex—the fact of bodies neither typically male nor female, together with the grim history of its medical management—was a topic for feminist theory before there was such a thing as intersex activism. Indeed, critical academic scholarship about intersex supported the consciousness raising that made an intersex activist movement possible. Activist engagement, in turn, has expanded the understanding of the theorists whose work is responsive to that activism. Central to the thinking about intersex are the questions of identity and its limits (...) that are an important focus of the work of Gloria Anzaldúa, whose narrative suggests she had a condition associated with intersex. While her work largely predates intersex activism, it powerfully encapsulates the tensions displayed in contests over identity that have become central over the last 15 years, and furthermore offers insight into the challenges that lie ahead. (shrink)

Intersex—the fact of bodies neither typically male nor female, together with the grim history of its medical management—was a topic for feminist theory before there was such a thing as intersex activism. Indeed, critical academic scholarship about intersex supported the consciousness raising that made an intersex activist movement possible. Activist engagement, in turn, has expanded the understanding of the theorists whose work is responsive to that activism. Central to the thinking about intersex are the questions of identity and its limits (...) that are an important focus of the work of Gloria Anzaldúa, whose narrative suggests she had a condition associated with intersex. While her work largely predates intersex activism, it powerfully encapsulates the tensions displayed in contests over identity that have become central over the last 15 years, and furthermore offers insight into the challenges that lie ahead. (shrink)

One of two commentaries on “Normalizing Atypical Genitalia: How a Heated Debate Went Astray,” by Josephine Johnston, from the November‐December 2012 issue.

Following extensive examination of published and unpublished materials, we provide a history of the use of dexamethasone in pregnant women at risk of carrying a female fetus affected by congenital adrenal hyperplasia (CAH). This intervention has been aimed at preventing development of ambiguous genitalia, the urogenital sinus, tomboyism, and lesbianism. We map out ethical problems in this history, including: misleading promotion to physicians and CAH-affected families; de facto experimentation without the necessary protections of approved research; troubling parallels to the history (...) of prenatal use of diethylstilbestrol (DES); and the use of medicine and public monies to attempt prevention of benign behavioral sex variations. Critical attention is directed at recent investigations by the U.S. Food and Drug Administration (FDA) and Office of Human Research Protections (OHRP); we argue that the weak and unsupported conclusions of these investigations indicate major gaps in the systems meant to protect subjects of high-risk medical research. (shrink)

The essays of this volume consider how acknowledgement of the fact of dependency changes our conceptions of law, political theory, and morality, as well as our very conceptions of self.

In this paper, I apply Michel Foucault’s analysis of normalization to the 2006 announcement by the US and European Endocrinological Societies that variations on the term “hermaphrodite” and “intersex” would be replaced by the term, “Disorders of Sex Development” or DSD. I argue that the change should be understood as normalizing in a positive sense; rather than fighting for the demedicalization of conditions that have significant consequences for individuals’ health, this change can promote the transformation of the conceptualization of intersex (...) conditions from “disorders like no other” to “disorders like many others.” Understood in these terms, I conclude, medical attention to those with atypical anatomies should be recast from a preoccupation with “normal appearance” to the concern with human flourishing that is the proper object of medical attention. (shrink)

The question of a genealogy of race and gender is first and foremost a question of methodology. By bringing to bear the critical tools provided by Foucauldian methodology on the construction of race and gender in the specific historical case of Levittown, this chapter explores the manner in which the stories that inform our sense of “the way things are,” are shaped historically. Moreover, the chapter argues that the significance of the institutions and discourses becomes apparent only once they are (...) placed within the context of the play of relations of power and the deployment of bodies of knowledge. A genealogical analysis of Levittown reveals that the concepts of race and gender are not only essential to any conception of modern subjectivity, but also for the products of a network of relations of power. (shrink)

Apology is arguably the central act of the reparative work required after wrongdoing. The analysis by Claudia Card of complicity in collectively perpetrated evils moves one to ask whether apology ought to be requested of persons culpably complicit in institutional evils. To better appreciate the benefits of and barriers to apologies offered by culpably complicit wrongdoers, this article examines doctors’ complicity in a practice that meets Card's definition of an evil, namely, the non-medically necessary, nonconsensual “normalizing” interventions performed on babies (...) born with intersex anatomies. It argues that in this instance the complicity of doctors is culpable on Card's terms, and that their culpable complicity grounds rightful demands for them to apologize. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 12.2 (2002) 215-224 [Access article in PDF] Bioethics Inside the Beltway Expanding Human Research Oversight Ellen Holt [Table]Overwhelmed by all the changes and proposed changes in the system to ensure human subject protection? It is an important subject and one in which everyone is interested. Being for human subject protection is like being for Mom. However, we all know that Mom sometimes can (...) be a handful! So I shall quickly review how we got to where we are, what is being done, and who is doing it. The table at the end of this article provides an additional summary of the current state of human subject protections. How We Got Here The current system of human subject protection was built 30 years ago with Institutional Review Boards (IRBs) as the cornerstone. Some well-publicized system failures in the last decade prompted evaluations that identified increasing volume and research complexity as primary threats to the system's effectiveness. In response, the Department of Health and Human Services (DHHS) Office of Inspector General (OIG 1998), and the National Bioethics Advisory Commission (NBAC 2001) issued recommendations calling for education and reform. Since then, initiatives in pursuit of these objectives have been rolling out non-stop. What Is Being Done The Office of Human Research Protections (OHRP) is leading the effort for DHHS, holding noncompliant research organizations accountable, while expanding the government's capacity for oversight, monitoring, and educating the research community. OHRP already has leveraged resources by: (1) implementing a unified federal registration system for all IRBs that identifies where IRBs are, how they are constituted, what kinds of research they are reviewing, and what volume of work they handle; (2) implementing a streamlined assurance process allowing all federal agencies to recognize a single, common assurance and avoid redundancy. The assurance is a commitment from any entity that receives federal funds for research to follow federal rules for protection of research subjects; and (3) redeploying resources from the process of negotiating assurances to supporting [End Page 215] quality improvement, including increasing the number site visits and providing IRBs with tools for self assessment and guidance for improvement.The goal is to prevent problems before they occur, and positive reinforcement and supportive training are the preferred themes. OHRP does wield a big stick and can shut down clinical studies in response to lax oversight, but it also has developed a big carrot by creating a national awards program to recognize excellence in protection of human research subjects—e.g., best practices, innovations in protecting research volunteers, and lifetime achievement for outstanding protection activities.Dr. Greg Koski, Director of OHRP, also is working with other government agencies to consolidate and build a comprehensive program. OHRP has four goals for a new oversight framework: Simplicity, Uniformity, Efficiency and Effectiveness. Selecting representatives from throughout the federal government, Dr. Koski has created the "SUEE" task force to identify and eliminate inefficiencies between the various agencies' human testing regulatory approaches. In addition, the SUEE task force will suggest improvements to current OHRP practices that can be achieved relatively quickly and easily.OHRP is working in concert with the Food and Drug Administration (FDA), which in October 2001, established the Office of Good Clinical Practice (OGCP) to improve the conduct and oversight of clinical research and to promote the protection of participants in FDA-regulated clinical research. Congressional Developments Although Dr. Koski is leading an aggressive charge to consolidate oversight across the federal government, many feel that reform will require legislation to succeed.Action on Capitol Hill is encouraging Bush administration efforts to reform oversight of clinical research. The House International Relations Committee has approved a measure that protects individuals in clinical trials overseas. A six-part Washington Post series (17-22 December 2000), "The Body Hunters," prompted an amendment to the Export Administration Act that, if finalized, will require drug companies to show that a U.S. ethics committee has approved the clinical trial as part of the application for authorization to export the investigational product.Members of Congress also are considering legislation to expand federal oversight of... (shrink)

In this collection, thirteen prominent philosophers and political scientists address the nature of liberalism, its origins, and its meaning and proper interpretation. Some essays examine the writings of liberalism's earliest defenders, like John Locke and Adam Smith, or the influence of classical liberalism on the American founders. Some focus on the Progressive movement and the rise of the administrative state, while others defend particular conceptions of liberalism or examine liberal theories of justice, including those of John Rawls and Robert Nozick. (...) Several essays discuss the U.S. Constitution, seeking to determine whether it is best viewed as empowering the federal government to achieve certain ends, or as strictly limiting its power to ensure the broadest freedom for individuals to pursue their own ends. Other essays address the limits of economic freedom or focus on the nature and extent of property rights and the government's power of eminent domain. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Institute of MedicineRuth Ellen Bulger (bio)IN 1863 the National Academy of Sciences (NAS) was established by federal charter to advise the government on scientific matters. Almost 100 years later, in 1971, the Academy created the Institute of Medicine within the NAS to focus on health-related problems and issues. Today the IOM has a program budget of about $13 million, which includes both private and government funds, and (...) is regarded as a leading center for health policy research.After briefly explaining the structure and general goals of IOM, this article describes several new or anticipated projects as well as some recently completed reports that have a strong ethical component.The IOMThe IOM's distinguished membership is made up of health care professionals of all sorts, scientists working in health-related disciplines, and lawyers, economists, and others knowledgeable in and involved with policies and activities associated with health issues. It is organized around eight working groups or divisions: Health Sciences Policy; Health Care Services; Health Promotion and Disease Prevention, including AIDS activities; International Health; Biobehavioral Sciences and Mental Disorders; the Food and Nutrition Board; the Medical Follow-up Agency; and the Health Policy Fellowship Programs. Each of these divisions is assisted by an oversight board that provides advice on its activities.It is important to know at the outset that IOM has decided that each of the divisions will include consideration of human values and ethical issues in their activities. Therefore, no separate locus was established within the IOM to deal with these matters. I am director of the Division of Health Sciences Policy, which is the only division that has made ethics a priority in its work, and it is the focus of this article.We have addressed questions of ethics, human values, social values, decision making, and priority setting in many of the division's reports. In fact, most of our reports at least raise ethical questions. In addition, a portion of the interest from endowment funds given to IOM by the Howard Hughes Medical Institute has been devoted to work in this area. [End Page 73]The division's advisory board, headed by Claude Bennett, chairman of the Department of Medicine, University of Alabama at Birmingham School of Medicine, has decided on two major priorities for the division: (1) foster an environment conducive to productive research, and (2) anticipate the impact of scientific—especially biomedical—advances on society, monitoring and considering the social and ethical factors that accompany basic scientific and technological progress. These two priorities are interdependent because the fostering of a good environment for research presupposes that the results of this research will produce beneficial effects for the society that supports the research.Upcoming StudiesSociety has been unable to establish a mechanism for discussing in a meaningful way—and possibly resolving—a number of pressing national issues with social, ethical, legal, and scientific ramifications. The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research considered several such issues and produced important reports about them. However, the commission was funded only until 1983. The Congressional Biomedical Ethics Advisory Committee was authorized in 1985 to address these contentious issues, but it was caught in the crossfire of congressional abortion politics and subsequently died. A new model is needed to attempt to develop national consensus on these complex, contentious issues.The Board on Health Sciences Policy has wrestled with this idea. Recently, it approved a proposal to establish a study committee charged with developing effective alternative methodologies for anticipating and addressing the social, legal, and ethical issues that may accompany rapid advances in biomedical science and technology. This multidisciplinary committee will be given a series of tasks: (1) to explore past experiences with some of these varying methodologies (i.e., town meetings, consensus conferences, forums, commissions, etc.); (2) to develop an agenda of issues likely to arise in the future; (3) to define and test a variety of alternative methodological approaches to these questions; (4) to evaluate strengths, weaknesses, and impact of the various approaches; and (5) to make recommendations on the process and structure by which this fact-finding, analytical, and decision-making function could be... (shrink)

A significant share of the U.S. federal R&D budget is devoted to large-scale, complex technological systems commonly referred to as "big science. " Over the last two decades, these systems have continued to grow in size, complexity, development time, and cost. At the same time, political changes in the United States, particularly the concern over government spending and the federal budget deficit, have made it more difficult for proponents to secure and preserve support for these programs over their lifetimes. Using (...) the U.S. space shuttle and space station programs as examples, the article shows that the political requirements for obtaining approval and funding for large and expensive research and development projects create conditions that reduce the likelihood that they will succeed technologically. The problems of technology-based projects like those of the U.S. space program are in fact deeply rooted in the American political process itself. (shrink)

For years, the collection of DNA samples from individuals arrested for criminal misconduct has been advocated by police officials and endorsed by politicians. Louisiana, Virginia, California, and South Dakota have adopted laws to add DNA profiles derived from these samples to their DNA databases. Texas provides for DNA to be taken after indictment but before conviction. Although the U.S. Department of Justice initially shied away from the issue, the DNA Fingerprint Act of 20055 authorizes the collection of DNA from individuals (...) arrested for violations of certain federal criminal laws, and the inclusion in the national DNA database of all profiles from states that type DNA prior to conviction.But are these laws constitutional? In an article in a previous issue of this journal, and reprinted in this issue, Professor Tracey Maclin concludes that fidelity to precedent should lead the Supreme Court to strike down the Louisiana and Virginia laws as violations of the Fourth Amendment. (shrink)

This paper focuses on the 1986 Amendments to the False Claims Act of 1863, which offers whistle-blowers financial rewards for disclosing fraud committed against the U.S. government. This law provides an opportunity to examine underlying assumptions about the morality of whistle-blowing and to consider the merits of increased reliance on whistle-blowing to protect the public interest. The law seems open to a number of moral objections, most notably that it exerts a morally corrupting influence on whistle-blowers. We answer these objections (...) and argue that the law is not objectionable on these grounds. Since there are no compelling moral objections to the law, it is appropriate and acceptable to judge the law in terms of its economic costs and benefits. We assess the most salient of these and conclude that the benefits outweigh the costs. We suggest that a mechanism similar to the Act should be considered for protecting stockholders’ interests in the private sector. We conclude by making several proposals for improving the existing legislation. (shrink)

This paper focuses on the 1986 Amendments to the False Claims Act of 1863, which offers whistle-blowers financial rewards for disclosing fraud committed against the U.S. government. This law provides an opportunity to examine underlying assumptions about the morality of whistle-blowing and to consider the merits of increased reliance on whistle-blowing to protect the public interest. The law seems open to a number of moral objections, most notably that it exerts a morally corrupting influence on whistle-blowers. We answer these objections (...) and argue that the law is not objectionable on these grounds. Since there are no compelling moral objections to the law, it is appropriate and acceptable to judge the law in terms of its economic costs and benefits. We assess the most salient of these and conclude that the benefits outweigh the costs. We suggest that a mechanism similar to the Act should be considered for protecting stockholders' interests in the private sector. We conclude by making several proposals for improving the existing legislation. (shrink)

Delivering high quality genomics-informed care to patients requires accurate test results whose clinical implications are understood. While other actors, including state agencies, professional organizations, and clinicians, are involved, this article focuses on the extent to which the federal agencies that play the most prominent roles — the Centers for Medicare and Medicaid Services enforcing CLIA and the FDA — effectively ensure that these elements are met and concludes by suggesting possible ways to improve their oversight of genomic testing.

As an institution serving “the youth of Maryland of the colored race,” the evolution of Princess Anne Academy as a land grant school depicts the problems and successes of the early black land grant schools of the South. It responded to the prevailing economic and social forces of its time. Despite the rhetoric of the federal 1890 Land Grant Act, Princess Anne Academy, like other 1890 schools, did not enjoy the equal financial support accorded the 1862 schools. A hostile community (...) and an indifferent legislature prevented Princess Anne Academy from actively participating in the educational life on the Eastern Shore. (shrink)

The law applicable to genomics in the United States is currently in transition and under debate. The rapid evolution of the science, burgeoning clinical research, and growing clinical application pose serious challenges for federal and state law. Although there has been some empirical work in this area, this is the first paper to survey and interview key scientific and legal stakeholders in the field of genomics to help ground identification of the most important legal problems that must be solved to (...) successfully integrate genomics into clinical care. The respondents in this study identified a wide range of interconnected issues, focusing specifically on the need for clear guidelines about how to use these data, fear of liability for those who use these data, and the need to protect patients from use of this information particularly by insurers, while endorsing data sharing. Developing legal strategies to support appropriate use of genomics now and in the future clearly will require making trade-offs, taking into account the full complexity of this legal ecosystem. (shrink)