Although there is much discussion in scientific and law journals regarding direct-to-consumer genetic testing (DTCGT), there is a paucity of philosophical-ethical examination of how such services threaten to repeat the essentialist, racial-projects of the past. On the one hand, testing for ancestry can be cathartic: for those lacking familial history as to when and how they came to be where they are, DTCGT can offer powerful access to their lineage and identity-formation. On the other hand, DTCGT inevitably reinscribes problematic epistemologies (...) of race—even when the companies claim that their tests can be tools to combat white supremacy. Tracing the roots of biological essentialism back to Aristotle, through the invention of raza as cocreator of modernity, and up to critical race theories today, provides a strong foundation to examine the nascent race-thinking underlying DTCGT. Borrowing heavily from Paul Taylor and Charles Mills, but also enlisting scholars from other disciplines, such as Ifeoma Ajunwa (law), Alondra Nelson (sociology), and Troy Duster (genetics), provides the broad scope necessary for thoughtful, agile engagement of that which is ameliorative, unethical, and even dangerous—for all of us—in the age of 23andMe. (shrink)

The Bermuda Principles for DNA sequence data sharing are an enduring legacy of the Human Genome Project. They were adopted by the HGP at a strategy meeting in Bermuda in February of 1996 and implemented in formal policies by early 1998, mandating daily release of HGP-funded DNA sequences into the public domain. The idea of daily sharing, we argue, emanated directly from strategies for large, goal-directed molecular biology projects first tested within the “community” of C. elegans researchers, and were introduced (...) and defended for the HGP by the nematode biologists John Sulston and Robert Waterston. In the C. elegans community, and subsequently in the HGP, daily sharing served the pragmatic goals of quality control and project coordination. Yet in the HGP human genome, we also argue, the Bermuda Principles addressed concerns about gene patents impeding scientific advancement, and were aspirational and flexible in implementation and justification. They endured as an archetype for how rapid data sharing could be realized and rationalized, and permitted adaptation to the needs of various scientific communities. Yet in addition to the support of Sulston and Waterston, their adoption also depended on the clout of administrators at the US National Institutes of Health and the UK nonprofit charity the Wellcome Trust, which together funded 90% of the HGP human sequencing effort. The other nations wishing to remain in the HGP consortium had to accommodate to the Bermuda Principles, requiring exceptions from incompatible existing or pending data access policies for publicly funded research in Germany, Japan, and France. We begin this story in 1963, with the biologist Sydney Brenner’s proposal for a nematode research program at the Laboratory of Molecular Biology at the University of Cambridge. We continue through 2003, with the completion of the HGP human reference genome, and conclude with observations about policy and the historiography of molecular biology. (shrink)

There has been increasing attention given to the way in which racial genetic clusters are constructed within population genetics. In particular, some scholars have argued that the conception of “whiteness” presupposed is such analyses is inherently problematic. In light of these ongoing discussions, this article aims to further clarify and develop this implicit relationship between whiteness, purity and contemporary genetics by offering a Foucauldian critique of the discourse of race within these genetic admixture studies. The goals of this article, then, (...) are twofold: first, to unearth some of the presuppositions operative in this genetics discourse that make possible a biological conception of race; and second, to examine some of the social and historical origins of those presuppositions. To this end, this article provides a brief genealogy of racial purity beginning with its formal legal codification in the one-drop rule. (shrink)

In September 1950, the Genetics Society of America (GSA) dedicated its annual meeting to a "Golden Jubilee of Genetics" that celebrated the 50th anniversary of the rediscovery of Mendel's work. This program, originally intended as a small ceremony attached to the coattails of the American Institute of Biological Sciences (AIBS) meeting, turned into a publicity juggernaut that generated coverage on Mendel and the accomplishments of Western genetics in countless newspapers and radio broadcasts. The Golden Jubilee merits historical attention as both (...) an intriguing instance of scientific commemoration and as an early example of Cold War political theatre. Instead of condemning either Lysenko or Soviet genetics, the Golden Jubilee would celebrate Mendel – and, not coincidentally, the practical achievements in plant and animal breeding his work had made possible. The American geneticists' focus on the achievements of Western genetics as both practical and theoretical, international, and, above all, non-ideological and non-controversial, was fully intended to demonstrate the success of the Western model of science to both the American public and scientists abroad at a key transition point in the Cold War. An implicit part of this article's argument, therefore, is the pervasive impact of the Cold War in unanticipated corners of postwar scientific culture. (shrink)

The historiography on the concept of race in the post-war sciences has focused predominantly on the UNESCO campaign against scientific racism and on the Anglo-American research community. By way of contrast, this article highlights the history of the concept of race from a thus far unexplored angle: from Swiss research centres and their global interconnections with racial researchers around the world. The article investigates how the acceptance, resonance, and prestige of racial research changed during the post-war years. It analyses what (...) resources could be mobilised that enabled researchers to carry out and continue scientific studies in the field of racial research or even to expand them and link them to new contexts. From this perspective, the article looks at the dynamics, openness, and contingency of the European post-war period, which was less stable, anti-racist, and spiritually renewed than retrospective success stories often suggest. The pronounced internationality of Swiss racial science and its close entanglement with the booming field of human genetics in the early 1950s point to the ambiguities of the period’s political and scientific development. I argue that the impact of post-war anti-racism on science was more limited than is frequently assumed: it did not drain the market for racial knowledge on a continent that clung to imperialism and was still shaped by racist violence. Only from the mid 1950s onwards did a series of unforeseen events and contingent shifts curtail the importance of the race concept in various sectors of the human sciences. (shrink)

Crediting scientific discovery for prolonging life is pervasive in biomedical histories of the genetic blood disorder, sickle cell disease. This includes the preventive strategies, such as newborn screening, that have underwritten the success of its life-extending interventions. Newborn screening is a technology that relies not only upon intact health infrastructures but also expertise and enhanced vigilance on the part of caregivers to anticipate complications while they are still open to circumvention. This paper posits that even after overcoming institutional barriers to (...) make newborn screening equitably available, care and vigilance are resources that are themselves subject to what I term anticipatory politics, where structural conditions also stratify expectations for the future, including the affective appeal of medical innovations. This paper elaborates the paradigm of anticipatory politics through an ethnographic examination of newborn screening to connect the comprehensive care practices that have improved survival for sickle cell disease, and as the burden of mortality shifts to young adulthood, to expose how those who are resourced to care for these futures preferentially stand to benefit from preventive interventions. (shrink)

In the target article, McGuire and colleagues (2009) found that 54% of social networkers would consider using direct-to-consumer personal genome testing (DTC PGT) for their child and that 63% agree...