1 This book is the product of a one-year project conducted by the Hastings Center, Institute of Society, Ethics and the Life Sciences, during 1976-1977. The Behavior Control Research Group-an ongoing, interdisciplinary working group com posed of philosophers, psychiatrists, psychologists, social sci entists, and lawyers-met four times over the course of the year with special consultants with expertise in the field of mental retardation. At those meetings, participants gave in formal presentations, which were followed by group discus sion. (...) As the project progressed, formal papers were delivered and subjected to further critical commentary. This volume, in two related parts, represents the deliberations of the group as a whole, and then offers individual papers prepared by some scholars in order to give a sense of the kind of specific arguments on which the general conclusions were based. We undertook the project to examine: (1) questions of competence and consent; and (2) the practical implications, lThe project, entitled "Ethical Issues in the Care and Treatment of the Mildly Mentally Retarded," was supported by the EVI5T program of the National Science Foundation under Grant No. 05576-14793. Any Opinions, findings, conclusions, or recommendations expressed herein are those of the authors and do not necessarily reflect the views of the National Science Foundation. ix x PREFACE in terms of care and treatment, that evolve from differing definitions and models applied to mental retardation. (shrink)

One important problem in cognitive science is to understand the development of cognitive processes in children and to devise computer models to explore the mechanisms that underlie these changes. Our research addresses these general goals. In particular, we are concerned with developmental changes in cognitive strategies in typical children and in children with mild mental retardation.

I'd like to say a few things about the quality of life of people like me. We can have – and now I do have – a good quality of life, but we still have to fight for it. We have to take back control of our lives from the KEEPERS, from the professionals.

Fragile X‐linked mental retardation is an enigmatic inheritable syndrome in which severe mental retardation, a cytogenetically detectable fragile site at Xq27.3 (FraX) and a number of dysmorphic features are associated. Genetic analysis shows that the mode of inheritance is more complex than a straightforward X‐linked recessive trait and probably involves a two‐step process for which several models have been proposed. Early attempts ‘at cloning the fragile site’ provided several DNA segments lying in its general vicinity, and (...) large scale DNA mapping methods were extensively applied in an effort to generate maps including this region. These efforts were complemented by more focussed methods such as microdissection; together these approaches have now provided a number of DNA segments within a 5cM interval around FraX, and with the help of these new probes the site is indeed being cloned. Unravelling the nature of the sequence(s) responsible for the mental retardation syndrome will probably take some time, however. (shrink)

Among the various human forms alluded to in the Hebrew prayer, mental retardation appears to be one of the most difficult to celebrate. It is the disability that other disabled persons do not want attributed to them. It is the disability for which prospective parents are most likely to use selective abortion (Wertz 2000). And it is the disability that prompted one of the most illustrious United States Supreme Court Justices to endorse forced sterilization, because "three generations of (...) imbeciles are enough." The mentally retarded have at times been objects of pity, compassion, or abuse by their caretakers and society at large. But they have rarely been seen as subjects, as citizens, as persons with equal entitlement to fulfillment. (shrink)

Kidney donation by young children and the mentally retarded has been supported by court decisions, arguments based on obligations inherent in family relationships, an array of contextual factors, and the principle of beneficence. These justifications for taking organs from people who cannot protect themselves are problematic and must be weighed against our obligation to protect the vulnerable. A compromise solution is presented that strongly protects young children and the mentally retarded but does not abdicate all responsibility to relieve suffering. Guidelines (...) are proposed that prohibit the retrieval of kidneys from young children and the mentally retarded but permit one exception. They would allow retrieval of a kidney when the consequence to a first order relative with whom the donor has a meaningful and valuable relationship is otherwise imminent death. This would be done in accordance with additional guidelines that minimize harm to the donor. Since most patients with end stage renal disease can be maintained on dialysis the need for a kidney to prevent death should be an uncommon occurrence. This compromise is proposed as a solution to a dilemma that exists because two ethical principles are in conflict and one cannot be honored without violating the other. (shrink)

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.

This paper discusses the issues of deciding to have a child with mental retardation, and of terminating a pregnancy when the future child is known to have the same disability. I discuss these problems by criticizing a utilitarian argument, namely, that one should act in a way that results in less suffering and less limited opportunity in the world. My argument is that future parents ought to assume a strong responsibility towards the well-being of their prospective children when (...) they decide to reproduce. The moral point in cases in which our acts affect the well-being of future children should be expressed strictly in terms of parents' culpability. Future children thus do not have current moral standing but presently living persons have current obligations to consider the presumable effects of their actions on future people. I will also argue that there are morally significant differences between 'selective contraception' and selective abortion. (shrink)

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 article examines two currently disputed issues regarding public policy for mentally retarded people. First, questions are raised about the legal tradition of viewing mental competence as an all-or-nothing attribute. It is argued that recently developed limited competence and limited guardianship laws can provide greater freedom for retarded people without sacrificing needed protection. Second, the question of who should act paternalistically for retarded people incapable of acting for themselves is examined. Rothman's claim that special formal advocates are the best (...) representatives for retarded people is discussed and criticized. It is argued that parents, professionals and legal advocates should share decision-making authority on behalf of those who are incompetent. (shrink)

This article discusses under what circumstances patients who are suffering from senile dementia or mental retardation should be submitted to coercive care, who should decide about this kind of coercion, and in what legal framework it should take place. A distinction is drawn between modest (i.e. of moderate degree) and meddlesome coercion. The use of modest coercion is defended. It is argued that medical personnel ought to decide exclusively about the use of modest coercion. However, no law should (...) render legitimate the use of even modest coercion. It is conceded that to prohibit the use of a kind of coercion that is expected to take place is hypocrisy. It is argued that this is, however, an acceptable form of hypocrisy. (shrink)

In this paper, the author addresses the problem of socialisation of children with a history of disabilities and mental retardation by means of visual arts. It is important to look at the very sphere of life of these categories of children. As a rule, these children, for the most part, live in dysfunctional families, which makes it almost impossible to provide them with a form of socialization. This article focuses on the extent to which and how a programme (...) of socialisation of these children can be achieved through the medium of visual arts. At the moment there are works of modern pedagogues who have devoted their scientific researches to this problem, but there are few teachers-artists who deal with this problem. In this article the author devotes his creative attention to this issue and reflects on what means of fine arts and visual literacy can develop and guide in the right direction the socialization of children and young people with disabilities by means of fine arts. A number of scientific works devoted to this problem are seriously reviewed. The author is actively trying to draw the attention of the teaching community to the problem of prevailing social conditions, to reach an educational and cognitive level and, as a consequence, to a better product of the set task of socialization of children with special needs and disabilities in the learning process by means of subject disciplines: drawing, painting, composition, printmaking, etc. (shrink)

Over the past 15 years, ethics committees have become common within the acute care hospital setting. Their development within long-term care settings has evolved more slowly and has been confined primarily to nursing homes. In this paper, I describe the development of an ethics committee in a residential center for the mentally retarded and developmentally disabled. I describe how the committee has progressed and some of the ethical issues in this setting.

During the late twentieth century, drawing on C. P. Snow’s well-known concept of a “two cultures” divide between scientists and humanists, many psychologists identified polarizing divergences in their discipline. This essay traces how purported professional divides affected the understanding and management of mental retardation in clinical psychology. Previous work in the history of science has compared the differing cultures of disciplines, demonstrating that there is no one, unified science. Through an examination of multiple “two cultures” divides within the (...) discipline of psychology, the essay demonstrates that perceived divergences in the field were animated by considerations of professional identity, ambitions, and goals. It argues that differing views among clinical psychologists about mental retardation, and crucially the localization of its causes—in individual bodies, minds, and genomes or within social institutions—reflected their position among the multiple “cultures” of psychology. References to Snow’s two cultures spanned the late twentieth-century scientific and clinical literature and were often used to encourage a conversation about the nature and goals of research in a field. In considering these purported “two cultures” divides, the essay proposes that historians of science must take care to look beyond constructed polarities, to instead analyze the resulting discussions about professional training and purpose. (shrink)

An evaluation of mental capacity is critical to a clinician's judgment about whether or not persons can make medical treatment decisions on their own behalf, and uncertainty about their ability to meaningfully participate in that process is one of the more common reasons an ethics consult is requested. The care of decisionally incapable patients—particularly those who lack advance care documents and no living relative who can speak for them—presents a quandary to healthcare personnel attempting to plan care in their (...) best interest, especially when options are multiple but none are ideal. These situations can be further complicated if involving a patient with a dual diagnosis of mental retardation and mental illness living in a community group home. (shrink)

: The film "Who Should Survive?: One of the Choices on Our Conscience" contains a dramatization of the death of an infant with Down syndrome as the result of the parents' decision not to have a congenital intestinal obstruction surgically corrected. The dramatization was based on two similar cases at The Johns Hopkins Hospital and was financed by the Joseph P. Kennedy, Jr., Foundation. When "Who Should Survive?" was exhibited in 1971, the public reaction was generally critical of the parents' (...) decision and the physicians' inaction. Although technological developments in medicine were a necessary condition for the production of this film and its unanticipated reception, they were not a sufficient condition. The proximate cause was a changed understanding of the capabilities of individuals with Down syndrome. Part of the impetus for this change was data showing the adverse effects of institutionalization on normal children. (shrink)