Mendelian Inheritance in Man, a computerized catalogue of human genetic disorders authored and maintained by cardiologist and medical genetics pioneer Victor A. McKusick, played a major part in demarcating between a novel biomedical science and the eugenic projects of racial betterment which existed prior to its emergence. Nonetheless, it built upon prior efforts to systematize genetic knowledge tied to individuals and institutions invested in eugenics. By unpacking the process of digitizing a homespun cataloguing project and charting its development into an (...) online database, this article aims to illuminate how the institution-building efforts of one individual created an ‘information order’ for accessing genetic information that tacitly shaped the norms and priorities of the field toward the pursuit of specific genes associated with discernible genetic disorders. This was not by design, but rather arose through negotiation with the catalogue's users; it accommodated further changes as biomedical research displaced the Mendelian paradigm. While great effort was expended toward making sequence data available to investigators during the Human Genome Project, MIM was largely taken for granted as a ‘legacy system’, McKusick's own labour of love. Drawing on recent histories of biomedical data, the article suggests that the bibliographical work of curation and translation is a central feature of value production in the life sciences meriting attention in its own right. (shrink)

Research on the U.S. women’s movement has documented the difficulties of cross-racial work between White women and women of racial/ethnic minorities. Less understood is how racial/ethnic minorities do cross-racial work among themselves to construct a collective identity of “women of color” that encourages solidarity across race, class, and other statuses. Drawing on research from the reproductive justice movement, I examine how women of color organizations that strive for intersectional praxis negotiate sameness and difference. I identify two different logics at work (...) within women of color organizations: the first relies on a presumption of “same difference” that emphasizes similar experiences of gender and race oppression; the second accords greater recognition to the “difference-in-sameness” that structures constituents’ lived experiences. While the former can reproduce precisely those forms of silencing and exclusion that women of color organizations seek to challenge, the second remains a ongoing process. The article concludes that women of color organizations must strive continuously to actively negotiate, rather than assume, commonality if they are to avoid reproducing various forms of marginalization and inequality. (shrink)

My fundamental argument is that a collective concept of race that presumes that there are, or were at some point in the past, discreet genetic groups that have tracked along continental lines and that those differences are the fundamental basis for our folk and political groupings of white, black, Asian, Native American, and Pacific Islander is a fallacy that will always lead to social inequality. Such an understanding of race currently reverberates through genetic science, but for social and political reasons, (...) and with good intentions. But if we want to move toward a social order that promotes social justice, all of us across the sciences, throughout health policy, and in the wider public will need to reconceptualize race in terms of legacies of discrimination. We will need to shift our focus from molecular differences to social and political differences, especially when we conduct gene‐environment analyses. (shrink)

This paper explores the relationship between eugenics, disability, and dehumanization, with a focus on forms of eugenics beyond Nazi eugenics.

Étant donné la définition de l'eugénisme, il est très difficile d'établir une distinction claire entre la science (médecine, ingénierie génétique) et l'eugénisme en tant que domaine inclus. Et pour définir une ligne sur laquelle l'ingénierie génétique ne devrait pas aller plus loin, conformément aux normes morales, juridiques et religieuses. Si nous acceptons l'aide de la génétique pour trouver des moyens de lutter contre le cancer, le diabète ou le VIH, nous acceptons également l'eugénisme positif tel qu'il est défini à présent. (...) Et si nous acceptons le dépistage génétique et les interventions sur le fœtus, ou l’avortement, nous acceptons implicitement l’eugénisme négatif. En outre, au niveau gouvernemental, bien que l'eugénisme soit officiellement refusé, il a été légalisé dans de nombreux pays jusqu'à récemment et est toujours accepté et légalisé, même sous des formes subtiles, même de nos jours. -/- TABLE: -/- Abstract Introduction 1. Histoire de l'eugénisme - 1.1 Antiquité - 1.2 Le darwinisme social - 1.3 Francis Galton - 1.4 Charles Davenport - 1.5 L'eugenisme en tant que politique d'État - - 1.5.1 L'eugenisme en États-Unis - - 1.5.2 L'eugenisme en Allemagne - 1.6 La période d'après-guerre 2. L'eugénisme actuel - 2.1 L'eugénisme libéral - 2.2 L'eugénisme en tant que politique d'État 3. L'éthique de l'eugénisme 4. L'avenir de l'eugénisme Conclusions Bibliographie -/- DOI: 10.13140/RG.2.2.12520.83203 . (shrink)

În acest articol încerc să argumentez opinia că, așa cum este definită eugenia, este foarte dificil de făcut o diferențiere clară între știință (medicină, ingineria genetică) și eugenie. Și de stabilit o linie peste care ingineria genetică nu ar trebui să treacă, conform unor norme morale, juridice și religioase. Atâta timp cât acceptăm ajutorul geneticii în găsirea unor modalități de combatere a cancerului, diabetului sau HIV, acceptăm în mod implicit și eugenia pozitivă, conform definiției actuale. Și atâta timp cât acceptăm (...) screening-ul genetic, și intervenții asupra fătului nenăscut, sau avortul, acceptăm în mod implicit și eugenia negativă. În plus, la nivel de guverne, deși oficial eugenia este repudiată, ea a fost legalizată în foarte multe țări până de curând, și încă mai este acceptată și legalizată, chiar dacă în forme mai subtile, și în prezent. În Introducere definesc termenul și modurile de clasificare. Urmează Istoria eugeniei pornind din perioada antică, introducerea eugeniei de Francis Galton, practica eugeniei ca politică de stat în diverse țări, și eugenia actuală (eugenia liberală). Analizez apoi diverse probleme ridicate de Etica eugeniei liberale, și am dezvoltat o secțiune aparte pentru Viitorul eugeniei, cu accent pe proiectul genomului uman. În final, în secțiunea Concluzii expun opiniile personale cu privire la practica actuală a eugeniei. Am folosit ca surse principale de investigație articolele lui Kenneth M. Ludmerer, ”American Geneticists and the Eugenics Movement: 1905-1935”, Kathy J. Cooke, ”Duty or Dream? Edwin G. Conklin's Critique of Eugenics and Support for American Individualism”, Jonathan Anomaly, ”Defending Eugenics”, John R. Harding Jr. ”Beyond Abortion: Human Genetics and the New Eugenics”, Michael Boulter, ”Bloomsbury Scientists”, Chapter Title: The rise of eugenics, 1901–14, Michael Ruse and Edward O. Wilson, ”Moral Philosophy as Applied Science” și Goering, Sara, "Eugenics". (shrink)

This article assesses interactions between American and German eugenicists in the interwar period. It shows the shifting importance and leading roles of German and American eugenicists: while interactions and exchanges between German and American eugenicists in the interwar period were important and significant, it remains difficult to establish direct American influence on Nazi legislation. German experts of race hygiene who advised the Nazi government in drafting the sterilization law were well informed about the experiences with similar laws in American states, (...) most importantly in California and Virginia, but there is little evidence to suggest they depended on American knowledge and expertise to draft their own sterilization law. Rather, they adapted a body of thought that was transnational by nature: suggesting that the Nazis’ racial policies can be traced back to American origins over-simplifies the historical record. Still, the ‘American connection’ of the German racial hygiene movement is a significant aspect of the general history of eugenics into which it needs to be integrated. The similarities in eugenic thinking and practice in the USA and Germany force us to re-evaluate the peculiarity of Nazi racial policies. (shrink)

This essay argues that the reigning medical and scientific understanding of the endocrine system, which insists on its fundamental biological plasticity, was historically constructed through a dual child–animal metaphor. The work accomplished by such organic metaphors, as Donna Haraway terms them, returns us to the endocrine laboratories and clinics in which they were built in Europe and the United States in the first half of the twentieth century. The child and animal metaphors implanted the concept of plasticity into the human (...) body to the effect of bringing sexed and gendered life under the jurisdiction of science and medicine, where it could not only be normalized in a sense long appreciated by transgender studies but also cultivated towards the ostensible “improvement” and “perfection” of the human. This is also, then, a history of the eugenic heritage of modern endocrinology, which has been largely ignored in recent discussions of plasticity and the body’s materiality. To interrogate the role of foundational organic metaphors in endocrinology is to open up plasticity not only to its historical context but also to radical contestation, making the contemporary assumptions of transgender medicine untimely, particularly the medicalization of the transgender child. (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)

Sir Francis Galton a sistematizat aceste idei și practici, influențat de cartea Originea Speciilor a vărului lui, Charles Darwin, prin care mecanismele de selecție naturală au fost potențial zădărnicite de civilizația umană. El a afirmat că societatea umană, protejând pe cei defavorizați și slabi, era în contradicție cu selecția naturală , și numai prin schimbarea acestor politici sociale ar putea fi salvată societatea de la o "revenirea spre mediocritate", frază transformată de el ulterior în "regresia spre mediocritatea." Charles Davenport, un (...) om de știință din Statele Unite, a inițiat o mișcare eugenică mondială implementată în multe țări. DOI: 10.13140/RG.2.2.26514.40644. (shrink)

Much of what has been written about the history of medical genetics in North America has focused on physician involvement in eugenics and the transition from heredity counseling to genetic counseling in the United States. What are typically missing in these accounts are details concerning the formation of a new medical specialty, i.e., medical genetics, and Canada’s involvement in specialty formation. Accordingly, this paper begins to fill in gaps by investigating, on the one hand, the history of American and Canadian (...) geneticists working together to support the creation of examining and teaching positions in human genetics in North American medical schools and, on the other, working independently of one another to monitor the rate and direction of workloads and patient access to local genetic counseling and laboratory services and, subsequently, achieve recognition for medical genetics as a medical specialty at the national level. (shrink)