The twisted helix: An essay on genetic counselors,eugenics, and social responsibility

The American eugenics movement had a significant impact on American social history, and analysis of the movement illustrates the relationship among science, scientists, and society. The history of the American eugenics movement as well as more recent examples of eugenic thought and biological determinism are reviewed. The need for genetic counselors to confront eugenic issues in their own profession and in society is discussed.     

The crane's foot: The rise of the pedigree in human genetics

The standard pedigree used by geneticists is intimately connected to the history of genetics. Pedigrees drawn today are based on standards established in the early decades of the twentieth century. Those standards were established by geneticists who pursued an active interest in eugenics. The slightly different standards followed in America vs. England to some extent followed the stronger support of Mendelism by the Americans, as well as the individual preferences of the leading human geneticists in those countries.     

Doing history that matters: Going public and activating voices as a form of historical activism

For many of us academics, doing community‐engaged research means coming to terms with the significant gaps in experience, privilege, and power, and overall access to knowledge. We are trained to learn through texts, not through direct experience. In some ways, we are even conditioned to tune out experience, or anecdote, to dilute personal subjectivities in favor of a critical analysis informed by a combination of methods and sources, and a reliance on text‐based forms of evidence. Whereas for most community members, evidence is experiential. This dynamic also underscores the tremendous power and responsibility we have as historians to shape identities and legacies through the stories we tell. In the end, I believe the risks are worth the rewards.     

Attitudes toward genetic counseling and prenatal diagnosis among a group of individuals with physical disabilities

Few studies have been published on the attitudes of people with physical disabilities toward genetic counseling and prenatal diagnosis. Articles in the lay press and social science literature on this topic, mainly written by disability rights activists and advocates, imply opposition to prenatal diagnosis and the field of clinical genetics by the physically disabled population. In this study, 15 adults with physical disabilities were interviewed regarding their attitudes toward genetic counseling and prenatal diagnosis. Genetic counseling and prenatal diagnosis were generally viewed favorably by this sample of the disability community. Only a small percentage of the sample perceived genetics to be eugenic. Implications for genetic counseling and future research are discussed.     

Expressing the Nature and Meaning of DNA: Six Books for Teachers and Students

DNA is an important agent not only in chemistry and biology but also in technology and modern culture. A number of books approach the double helix from different angles. These perspectives include (1) the science of DNA and genetics; (2) genetic engineering; (3) the ethics of manipulating genetic material; and (4) DNA in culture and religion. Various views of DNAprovide insights into human nature beyond its molecular composition.     

STIRPICULTURE: SCIENCE‐GUIDED HUMAN PROPAGATION AND THE ONEIDA COMMUNITY

Between 1869 and 1879, the communal Christian group the Oneida Community undertook a pioneering eugenics experiment called “stirpiculture” in upstate New York. Stirpiculture resulted in the planned conception, birth, and communal rearing of fifty‐eight children, bred from selected members of the Oneida Community. This article concerns how the Oneida Community's unique approach to religion and science provided the framework for the creation, process, and eventual dissolution of the stirpiculture experiment. The work seeks to expand current understanding of the early history of eugenics in the United States by placing its practice more than two decades earlier than is generally considered. Additionally, this article situates the Community's leader John Humphrey Noyes as an early eugenics and social scientific thinker. Finally, the treatment provides a case study for the transitional period in mid to late nineteenth century America whereby scientific modes of epistemology were accommodated within or supplanted by theological worldviews.     

The relevance of castration and circumcision to the origins of psychoanalysis: 1. The medical context1

In this paper the author outlines and discusses the origins and the decline of castration and circumcision as a cure for the nervous and psychic disturbances in women and little girls between 1875 and 1905. The author argues that the opposition to this medical practice affected the conception of hysteria, promoting a distinction between sexuality and the genital organs, and the emergence of an enlarged notion of sexuality, during the period from Freud’s medical education to the publication of the Three Essays on the Theory of Sexuality. The hypothesis is put forward that Freud came directly in contact with the genital theory of the neurosis at the time of his training on the nervous disturbances in children with the paediatrician, Adolf Baginsky, in Berlin, in March 1886. It is hypothesized that this experience provoked in Freud an abhorrence of circumcision ‘as a cure or punishment for masturbation’, prompting an inner confrontation which resulted in a radical reorganization of the way of thinking about sexuality. It is also suggested that this contributed to Freud developing a capacity to stay with contradictions, something which would become a central quality of the psychoanalytic attitude.     

Germ-line gene therapy and the clinical ethos of medical genetics

Although the ability to perform gene therapy in human germ-line cells is still hypothetical, the rate of progress in molecular and cell biology suggests that it will only be a matter of time before reliable clinical techniques will be within reach. Three sets of arguments are commonly advanced against developing those techniques, respectively pointing to the clinical risks, social dangers and better alternatives. In this paper we analyze those arguments from the perspective of the client-centered ethos that traditionally governs practice in medical genetics. This perspective clarifies the merits of these arguments for geneticists, and suggests useful new directions for the professional discussion of germ-line gene therapy. It suggests, for example, that the much discussed prospect of germ-line therapy in human pre-embryos may always be more problematic for medical genetics than adult germ-line interventions, even though the latter faces greater technical difficulties.     

Disability Rights,Prenatal Diagnosis and Eugenics: A Cross-Cultural View

This paper considers the disability rights critique of genetic testing in the context of different communities and the issue of nondirectiveness. Despite the wide usage of genetic diagnosis in Israel, no public debate has emerged there concerning disability rights and prenatal testing. The common attitude that emerged from interviews with Israeli representatives of organizations “of’’ and “for’’ people with genetic diseases and congenital disabilities can be described as a two-fold view of disability: support of genetic testing during pregnancy, and support of the disabled person after birth. This two-fold view is explained as a secular construction situated in legal, economic and cultural contexts. The paper concludes by considering the implications of the “two-fold view’’ of disability for the profession of genetic counseling. It is argued that awareness of the existence of conflicting views among clients—such as the view of the ‘disability critique’ as well as of the “two-fold view of disability’’—should strengthen the significance of nondirectiveness.     

Plato's Child and the Limit-Points of Educational Theories

This paper analyzes how the figure of the childhas been used to authorize a series ofboundaries that have constituted thelimit-points of educational theories orphilosophies. Limit-points are the conceptualboundaries that educational theories produce,move within, respond to, and make use ofbecause the perception is that they cannot beargued away or around at the time. A method ofcomparative historico-philosophy is used tocontrast limit-points in Platonic figurationsof the child and education with childcenteredand eugenic theories of the late nineteenth andtwentieth century West. The figuration of thechild in both periods is imbricated in formingboundaries around a power-motion-reason nexusand in delineating what necessity and justicemean. The meaning-space that the child canoccupy in relation to such concepts has shiftedwith them and has been important to depictingUtopian and cosmological imaginings atdifferent historical moments and forauthorizing in turn what counts as anappropriate and/or realistic educationalphilosophy.