This paper examines five groups of women that were instrumental in the emergence of the category of "feeblemindedness" in the United States. It analyzes the dynamics of oppression and power relations in the following five groups of women: "feeble-minded" women, institutional caregivers, mothers, researchers, and reformists. Ultimately, I argue that a feminist analysis of the history of mental retardation is necessary to serve as a guide for future feminist work on cognitive disability.

This paper examines five groups of women that were instrumental in the emergence of the category of “feeblemindedness” in the United States. It analyzes the dynamics of oppression and power relations in the following five groups of women: “feebleminded” women, institutional caregivers, mothers, researchers, and reformists. Ultimately, I argue that a feminist analysis of the history of mental retardation is necessary to serve as a guide for future feminist work on cognitive disability.

A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.

A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.

The ArgumentEugenics is generally regarded as evil; but what was its sin? Racism, class bias, and violation of reproductive freedom, which tainted objectionable eugenic interventions, are not part of the core notion of eugenics. A number of candidates have been suggested as the wrong inherent in eugenics, ranging from statism to the impossibility of consensus on the ideal human being. It is most plausible to view eugenics as sharing moral dilemmas with much of public health, and the critical issues as (...) those of distributive justice. (shrink)

Tuberculosis was clearly one of the most predominant diseases of the early twentieth century. At this time, Americans involved in the eugenics movement grew increasingly interested in methods to prevent this disease's potential hereditary spread. To do so, as this essay examines, eugenicists' attempted to shift the accepted view that tuberculosis arose from infection and contagion to a view of its heritable nature. The methods that they employed to better understand the propagation and control of tuberculosis are also discussed. Finally, (...) the essay explores the interpretative analyses of data that the Eugenics Record Office used in an attempt to convince contemporaries of the hereditary transmission of tuberculosis. (shrink)

Eugenics casts a long shadow over contemporary genetics. Any measure, whether in clinical genetics or biotechnology, which is suspected of eugenic intent is likely to be opposed on that ground. Yet there is little consensus on what this word signifies, and often only a remote connection to the very complex set of social movements which took that name. After a brief historical summary of eugenics, this essay attempts to locate any wrongs inherent in eugenic doctrines. Four candidates are examined and (...) rejected. The moral challenge posed by eugenics for genetics in our own time, I argue, is to achieve social justice. (shrink)

As a result of the publicly funded Human Genome Project (HGP), and an increasing number of private enterprises, a new form of eugenic theory and practice has emerged, differing from previous manifestations. Genetic testing has become a consumer service that may now be purchased at greatly reduced cost. While the old eugenics was pseudoscientific, the new eugenics is firmly based on DNA research. While the old eugenics focused on societal measures against the individual, the new eugenics emphasizes the family as (...) a control agent. Eugenics is now voluntary, with the promise of abortion for those afraid of producing genetically damaged children. The ethical concepts of beneficence, avoidance of maleficence, autonomy, and equity are discussed in terms of aspects of the HGP. One major issue is the need for an ethical system available to health consumers that will empower them and assist in their biogenic decisions. “The concentration on the genes implicated in cancer is only a special case of a general genomania (emphasis added) that surfaces in ... the weekly announcements in The New York Times of the location of yet another gene for another disease. The revealing rhetoric of this publicity is always the same; only the blanks need to be filled in: ‘It was announced today by scientists at [Harvard, Vanderbilt, Stanford] Medical School that a gene responsible for [some, many, a common form of] [schizophrenia, Alzheimer’s, arteriosclerosis, prostate cancer] has been located and its DNA sequence determined. This exciting research, say scientists, is the first step in what may eventually turn out to be a possible cure for this disease.’”. (shrink)

Though the reputation of eugenics has been tarnished by history, eugenics per se is not necessarily a bad thing. Many advocate a liberal new eugenics—where individuals are free to choose whether or not to employ genetic technologies for reproductive purposes. Though genetic interventions aimed at the prevention of severe genetic disorders may be morally and socially acceptable, reproductive liberty in the context of enhancement may conflict with equality. Enhancement could also have adverse effects on utility. The enhancement debate requires a (...) shift in focus. What the equality and/or utility costs of enhancement will be is an empirical question. Rather than philosophical speculation, more social science research is needed to address it. Philosophers, meanwhile, should address head-on the question of how to strike a balance between liberty, equality, and utility in cases of conflict (in the context of genetics). (shrink)

This article explores contemporary biopolitics in the light of Michel Foucault's oft quoted suggestion that contemporary politics calls `life itself' into question. It suggests that recent developments in the life sciences, biomedicine and biotechnology can usefully be analysed along three dimensions. The first concerns logics of control - for contemporary biopolitics is risk politics. The second concerns the regime of truth in the life sciences - for contemporary biopolitics is molecular politics. The third concerns technologies of the self - for (...) contemporary biopolitics is ethopolitics. The article suggests that, in these events, human beings have become `somatic individuals': personhood is increasingly being defined in terms of corporeality, and new and direct relations are established between our biology and our conduct. At the same time, this somatic and corporeal individuality has become opened up to choice, prudence and responsibility, to experimentation, to contestation and so to a politics of `life itself'. (shrink)

By the 1950s, eugenics had lost its scientific status; it now belonged to the context rather than to the content of science. Interest in the subject was also at low ebb. But that situation would soon change dramatically. Indeed, in an essay-review published in 1993, Philip Pauly commented that a “eugenics industry” had come to rival the “Darwin industry” in importance, although the former seemed less integrated than the latter. Since then, the pace of publication on eugenics, including American eugenics, (...) has only accelerated, while the field has become even more fractured, moving in multiple and even contradictory directions. This essay explores the trajectory of work on the history of American eugenics since interest in the subject revived in the 1960s, noting trends and also fractures. The latter are seen to result partly from the fact that professional historians no longer own the subject, which has attracted the interest of scholars in several other disciplines as well as scientists, political activists, and journalists, and also from the fact that the history of eugenics has almost always been policy-oriented. Historians’ desire to be policy-relevant and at the same time attentive to context, complexity, and contingency has generated tensions at several levels: within individuals, among historians, and between professional historians and others who also engage with the history of eugenics. That these tensions are resolved differently by different authors and even by the same authors at different times helps explain why the fragmentation that Pauly noted is not likely to be overcome anytime soon. (shrink)

This essay re-examines the disability critique of prenatal and pre-implantation screening in light of evidence about the larger context in which fertility and reproductive healthcare is rendered in the U.S. It argues that efforts to identify acceptable criteria for trait-based selection or otherwise impose reasons-based limitations on reproductive choice should be avoided because such limitations tend to perpetuate the discrimination encountered by adults with disabilities seeking fertility and reproductive health services.

In this consensus report by a diverse group of academics who conduct and/or are concerned about social and behavioral genomics (SBG) research, the authors recount the often‐ugly history of scientific attempts to understand the genetic contributions to human behaviors and social outcomes. They then describe what the current science—including genomewide association studies and polygenic indexes—can and cannot tell us, as well as its risks and potential benefits. They conclude with a discussion of responsible behavior in the context of SBG research. (...) SBG research that compares individuals within a group according to a “sensitive” phenotype requires extra attention to responsible conduct and to responsible communication about the research and its findings. SBG research (1) on sensitive phenotypes that (2) compares two or more groups defined by (a) race, (b) ethnicity, or (c) genetic ancestry (where genetic ancestry could easily be misunderstood as race or ethnicity) requires a compelling justification to be conducted, funded, or published. All authors agree that this justification at least requires a convincing argument that a study's design could yield scientifically valid results; some authors would additionally require the study to have a socially favorable risk‐benefit profile. (shrink)

For all its apparent debate bioethical discourse is in fact very narrow. The discussion that occurs is typically within limited parameters, rarely fundamental. Nor does it accommodate divergent perspectives with ease. The reason lies in its ideology and the political and economic perspectives that ideology promotes. Here the ideology of bioethics' fundamental axioms is critiqued as arbitrary and exclusive rather than necessary and inclusive. The result unpacks the ideological and political underpinnings of bioethical thinking and suggests new avenues for a (...) broader debate over fundamentals, and a different approach to bioethical debate. (shrink)

This article assesses the potential impact of current genomics research on human rights against the backdrop of the eugenics movement in the English-speaking world during first third of the twentieth century, The echo of eugenic interventions in societies far beyond Nazi Germany reverberates in the ethical debates triggered by the potential inherent in recent molecular biological developments. Mandatory eugenic restrictions of reproductive freedom seem less likely in countries committed to civil liberties than under authoritarian governments. More likely, consumer choice might (...) sustain a trend towards voluntary “improvement” of biological inheritance in the future. However, the increasing availability of genetic information and the patenting of human genes may lead, respectively, to a loss of reproductive autonomy and a reduction in equitable access to medical care; hence new regulations and/or legislation may be required to ensure appropriate control over genetic information and use of intellectual property rights in human genes. (shrink)

The ArgumentAmerican eugenics developed out of a cultural tradition independent of medicine. However, the eugenicist Harry Hamilton Laughlin and some legal experts involved in eugenic practice in the United States used medical language in discussing and evaluating enforced eugenic sterilizations. They built on medicine as a model for healing, while at the same time playing down medicine's concern with its traditional client: the individual patient. Laughlin's attitude toward medicine was ambivalent because he wanted expert eugenicists, rather than medical experts, to (...) control eugenic practice. In contrast, legal experts saw eugenics as an integral part of medicine, though one expert challenged basing the judicial system on eugenically minded medicine. All in all, the medicalization of American eugenics involved expanding the scope of medicine to include the mutilation of individuals for the benefit of society. The judicial system was medicalized in that an expanded medicine became the basis of legislation in the thirty states that permitted eugenic sterilizations. (shrink)

On October 1, 1988, thirty-five years after co-discovering the structure of the DNA molecule, Dr. James Watson launched an unprecedented experiment in American science policy. In response to a reporter's question at a press conference, he unilaterally set aside 3 to 5 percent of the budget of the newly launched Human Genome Project to support studies of the ethical, legal, and social implications of new advances in human genetics. The Human Genome Project (HGP), by providing geneticists with the molecular maps (...) of the human chromosomes that they use to identify specific human genes, will speed the proliferation of a class of DNA-based diagnostic and risk-assessment tests that already create professional ethical and health-policy challenges for clinicians. “The problems are with us now, independent of the genome program, but they will be associated with it,” Watson said. “We should devote real money to discussing these issues.” By 1994, the “ELSI program” (short for “Ethical, Legal, and Social Implications”) had spent almost $20 million in pursuit of its mission, and gained both praise and criticism for its accomplishments. (shrink)

The ArgumentPressures to lower health-care costs remain an important stimulus to eugenic approaches. Prenatal diagnosis followed by abortion of affected fetuses has replaced sterilization as the major eugenic technique. Voluntary acceptance has replaced coercion, but subtle pressures undermine personal autonomy. The failure of the old eugenics to accurately predict who will have affected offspring virtually disappears when prenatal diagnosis is used to predict Mendelian disorders. However, when prenatal diagnosis is used to detect inherited susceptibilities to adult-onset, common, complex disorders, considerable (...) uncertainty is inherent in the prediction. Intolerance and the resurgence of genetic determinism are current pressures for a eugenic approach. The increasing use of carrier screening and of prenatal diagnosis could itself generate intolerance for those who refuse the procedures. Genetic determinism deflects society from social action that would reduce the burden of disease far more than even the maximum use of eugenics. (shrink)

During the 1920s and 1930s geneticist L. C. Dunn of Columbia University cautioned Americans against endorsing eugenic policies and called attention to eugenicists' less than rigorous practices. Then, from the mid-1940s to early 1950s he attacked scientific racism and Nazi Rassenhygiene by co-authoring Heredity, Race and Society with Theodosius Dobzhansky and collaborating with members of UNESCO on their international campaign against racism. Even though shaking the foundations of scientific discrimination was Dunn's primary concern during the interwar and post-World War II (...) years, his campaigns had ancillary consequences for the discipline. He contributed to the professionalization of genetics during the 1920s and 1930s and sought respectability for human genetics in the 1940s and 1950s. My article aims to elucidate the activist scientist's role in undermining scientific discrimination by exploring aspects of Dunn's scientific work and political activism from the 1920s to 1950s. Definitions are provided for scientific discrimination and activist scientist. (shrink)

The case of Ashley X involved a young girl with profound and permanent developmental disability who underwent growth attenuation using high-dose estrogen, a hysterectomy, and surgical removal of her breast buds. Many individuals and groups have been critical of the decisions made by Ashley's parents, physicians, and the hospital ethics committee that supported the decision. While some of the opposition has been grounded in distorted facts and misunderstandings, others have raised important concerns. The purpose of this paper is to provide (...) a brief review of the case and the issues it raised, then address 25 distinct substantive arguments that have been proposed as reasons that Ashley's treatment might be unethical. We conclude that while some important concerns have been raised, the weight of these concerns is not sufficient to consider the interventions used in Ashley's case to be contrary to her best interests, nor are they sufficient to preclude similar use of these interventions in the future for carefully selected patients who might also benefit from them. (shrink)

Doctors are regularly confronted with requests for sterilisation of mentally handicapped people who cannot give consent for themselves. They ought to act in a medical vacuum because there doesn't exist a consensus about a model for decision making on this matter. In this article a model for decision making is proposed, based on a review of the literature and our own research data. We have attempted to select and classify certain factors which could enable us to arrive at an ethically (...) justifiable method of making a medical decision. In doing so we distinguish two major criteria: heredity and parenting competence, and six minor criteria: conception risk, IQ, age, personality, medical aspects and prognosis and finally support and guidance for the mentally handicapped person. The major criteria give rise to a "situation of necessity". In this situation the physician is confronted with a conflict of values and interests. The minor criteria are of an entirely different ethical order. They can only be considered once the major criteria have created a "situation of necessity". Ultimately it comes down to deciding whether the benefits of sterilisation outweigh the drawbacks and whether the means are appropriate to the end, where efficient contraception is the end and irreversible sterilisation is the means. (shrink)

Between 1917 and 1935, William Carlos Williams’ poetic style shifted from a focus on color to a verbal grayscale of photorealism. Considering this shift alongside of the historical connection between photography and eugenics raises questions about Williams’ status as a physician during an era when medical discourse was dominated by theories of scientific racism. While one might conclude that Williams move from color to grayscale represents a capitulation to public health anxieties regarding the pathologized bodies of the immigrant poor, I (...) argue that it is precisely through his adoption of black-and-white photorealism that Williams overturns hereditary notions of degeneracy. (shrink)

A recent message on one of the e-mail bulletin boards sent by a college student read, “I believe that the AIDS virus was developed in government labs for the purpose of controlling black folks.” In September 1990, Essence, an African American magazine with a circulation of 900,000, had as a lead article “AIDS: Is It Genocide?” In 1991, the New York Times quoted Clarence Page, African American columnist and Pulitzer prize winner: “You could call conspiracy theories about AIDS and drugs (...) fringe ideas, but they seem, to have a large following among the black intelligentsia. … [And] you find it at all levels.” In April 1992, Lorene Gary explained in Newsweek “Why it's not just paranoia.” In that same month, another New York Times article reported: “Bizarre as it may seem to most people, many black Americans believe that AIDS and the health measures used against it are part of a conspiracy to wipe out the black race.”4 In February 1992, Science quoted Peter Breggin, director of the Center for the Study of Psychiatry in Bethesda, Maryland, as saying that research on violence “cloaks the intention to identify problem black children and then … prescribe pacifying drugs.”. (shrink)

The Oxford Handbook of Philosophy and Race provides up-to-date explanation and analyses by leading scholars of contemporary issues in African American philosophy and philosophy of race. These original essays encompass the major topics and approaches in this emerging philosophical subfield that supports demographic inclusion and diversity while at the same time strengthening the conceptual arsenal of social and political philosophy. Over the course of the volume's ten topic-based sections, ideas about race held by Locke, Hume, Kant, Hegel, and Nietzsche are (...) supplemented by suppressed thought from the African diaspora, early twentieth-century African American perspectives and Native-, Asian-, and Latin-, American views. The contributors bring philosophical analysis to bear on the status of racial divisions as categories of humanity in the biological sciences, as well as within contemporary criticism and conceptual analysis. Essays present the special applications of American philosophy and continental philosophy to ideas of race as methodological alternatives to more analytic approaches. As a collection of analyses and assessments of 'race' in the real world, the volume pays trenchant and relevant attention to historical and contemporary racism and what it means to say that 'race' and racial identities are socially constructed. The essays analyze contemporary social issues including the importance of racial difference and identity in education, public health, medicine, IQ and other standardized tests, and sports. Additionally, the essays consider the societal limitations and structures provided by public policy and law. As a critical theory, the volume compares the study of race to feminism. Historical and contemporary, academic and popular, racisms pertaining to male and female gender receive special consideration throughout the volume. While this comprehensive collection may have the effect of a textbook, each of the original essays is a fresh and authentic development of important present thought. (shrink)