The guiding premise from which this special report begins is the conviction and hope that justice is at the normative heart of medicine and that it is the perpetual task of bioethics to bring concerns of justice to bear on medical practice. On such an account, justice is medicine's lifeblood, that by which it contributes to life as opposed to diminishing it. It is in this larger, historical, intersectional, critical, and ethically minded context that we must approach pressing questions facing (...) medicine, including the question of the import and role of genomic knowledge for human life. The second premise is that, at least in principle, the knowledge generated by genomics can be a gift or a weight, or both at the same time. That is to say that, on the one hand, genomic knowledge is a gift, creating novel insights into the genetic drivers of disease and into the geographical paths of our ancestors. And on the other hand, it is a weight, creating new obligations, new forms of social classification, and new forms of surveillance. Because it is in many ways the “common sense” of the day that genomic knowledge is a gift, this special report, which contains nine essays, concentrates on the ways in which such knowledge can be a weight, a weight that has the potential to thwart—and historically has thwarted—medicine from genuinely advancing justice . (shrink)

The 1979 partial nuclear reactor meltdown at Three Mile Island was simultaneously hyper-visible and hidden from public view. It was the subject of non-stop media attention, but its causes and consequences required expert explanation. No fire or explosion marked the moment when insensible radionuclides escaped the facility. Yet, residents recalled a variety of troubling sights, sounds, odors, tastes, and sensations. Public distrust percolated in the interstices between government assertions that little radiation had escaped the facility and residents’ sense memories of (...) the incident. This article traces intertwined networks of activists from Japan and Pennsylvania as they mobilized legally, politically, and scientifically to develop evidence about the offsite effects of Three Mile Island. Exploring the distinct cosmology of evidence that activists marshaled, the article shows how they placed the messy, contingent, dynamic living world at the center of inquiries about the meltdown’s consequences. Activists developed new practices of biological witness that reconfigured the interplay between scientific, legal, and moral authority, while concurrently reformulating sufferers’ subjectivities and notions of scientific objectivity. In the process, they suggested that environmental justice entailed epistemic justice. Their cosmology of evidence served as an argument and a material proof that the beloved but suffering living world, and the sciences used to understand it, could and should frame the governance of industrial society’s invisible harms. (shrink)

The US National Institute of Health’s Human Microbiome Project aims to use genomic techniques to understand the microbial communities that live on the human body. The emergent field of microbiome science brought together diverse disciplinary perspectives and technologies, thus facilitating the negotiation of differing values. Here, we describe how values are conceptualized and negotiated within microbiome research. Analyzing discussions from a series of interdisciplinary workshops conducted with microbiome researchers, we argue that negotiations of epistemic, social, and institutional values were inextricable (...) from the reflective and strategic category work that defined and organized the microbiome as an object of study and a potential future site of biomedical intervention. Negotiating the divergence or tension between emerging scientific and regulatory classifications also activated “values levers” and opened up reflective discussions of how classifications embody values and how these values might differ across domains. These data suggest that scholars at the intersections of science and technology studies, ethics, and policy could leverage such openings to identify and intervene in the ways that ethical/regulatory and scientific/technical practices are coproduced within unfolding research. (shrink)

Based on an ethnographic project in a public high school in a low-income neighborhood in South Los Angeles, this paper argues that access to information and communication technologies cannot be taken as helpful or empowering on its own terms; instead, concerns about justice must be accounted for by the local communities technology is meant to benefit. This paper juxtaposes the concept of technological access with recent work in feminist science and technology studies on infrastructure, maintenance, and ethics. In contrast to (...) popular descriptions of ICTs as emancipatory and transformative, in the setting of an urban school, access produced extensive demands for attention, time, and information. This paper focuses on the labor of a group of student workers, Student Technology Leaders, and how they became responsible for the significant amount of repair and maintenance work involved in keeping hundreds of new computing devices available for use. An expanded process of accounting can more realistically frame issues of justice and its relationship to ICTs. I use a town hall meeting held with these students as an example of a processual vision of justice, one that encourages the beneficiaries of technological access to evaluate costs, benefits, and ethical concerns together. (shrink)

In this article, I examine the rhetoric of democratic science within the field of synthetic biology. The still emerging field of synthetic biology claims to be a new kind of science based on the promises of affordable medicines, environmental bioremediation, and democratic, do-it-yourself science practices. I argue that the formation of a more democratic, DIY portion of this field represents an intervention into ethics debates by becoming “the proper informed public.” Through an analysis of twelve DIY and community-based synthetic biology (...) organizations’ websites, I found that democratic science was presented as a novel, progressive approach to science that addresses ethical concerns and at the same time produces better scientific results. In part, these claims were made possible through a reconfiguring of the boundaries between Science and the Public where scientists lay claim to solidarity with the public at large in opposition to traditional biosciences and Big Bio. My research suggests that the superficial use of the language of rights and democracy relegitimizes the primacy of scientific discovery to solve societal problems. I further suggest that by becoming the proper informed public, ethical challenges from publics critical of genetic sciences may become delegitimized. (shrink)

This article examines a genetic ancestry testing program called the Living History Project that was jointly organized by a nonprofit educational institute and a for-profit genealogy company in South Africa. It charts the precise mechanisms by which the LHP sought to shape a postapartheid genome through antiracist commitments aimed at contesting histories of colonial and apartheid rule in varied ways. In particular, it focuses on several tensions that emerged within three modes of material-discursive practice within the production of the LHP: (...) subject recruitment, informed consent, and participant reflections. In the end, it argues that several contradictory tensions were central to the making of the LHP’s postapartheid genome and that it should be understood as nonracial rather than antiracist. (shrink)

This article provides empirical evidence of the social context and moral reasoning embedded within a parents’ decision to participate in autism genetics research. Based on in-depth interviews of parents who donated their family’s blood and medical information to an autism genetic database, three narratives of participation are analyzed, including the altruistic parent, the obligated parent, and the diagnostic parent. Although parents in this study were not generally concerned with bioethical principles such as autonomy and the issues of informed consent and/or (...) privacy and confidentiality of genetic information, a critical analysis reveals contextual bioethics embedded within these different narratives. These include the negotiations of responsibility that parents confront in biomedical research, the misguided hope and expectations parents place in genomic science, and the structural barriers of obtaining an autism diagnosis and educational services. Based on these findings, this article demonstrates the limits of a principle-based approach to bioethics and the emergent forms of biological citizenship that takes into account the social situations of people’s lives and the moral reasoning they negotiate when participating in autism genetic research. (shrink)