“Informed consent” implicitly links the transmission of information to the granting of permission on the part of patients, tissue donors, and research subjects. But what of the corollary, informed refusal? Drawing together insights from three moments of refusal, this article explores the rights and obligations of biological citizenship from the vantage point of biodefectors—those who attempt to resist technoscientific conscription. Taken together, the cases expose the limits of individual autonomy as one of the bedrocks of bioethics and suggest the need (...) for a justice-oriented approach to science, medicine, and technology that reclaims the epistemological and political value of refusal. (shrink)

How do ethics show up in the everyday behaviors and conversations of researchers in a scientific laboratory? How does the microcosmic culture of the laboratory shape researchers’ understandings of scientific ethics? We, an interdisciplinary team representing anthropology, computer science, and rhetorical studies, investigated these questions in two university STEM labs. Similar to previous work mapping out the epistemic cultures, we sought to understand the ethical cultures of these research groups. We observed their lab meetings for several months and conducted interviews (...) with members of the research laboratories. Ultimately, we recognized two distinct ethical cultures within the two laboratories: one focused on the relationship between science and social justice, and the other focused on clean data and accuracy as an ethical issue. These two distinct ethical cultures were discernable through ethnography, close reading of laboratory members’ language, as well as broad-scale topic modeling. Our project complements previous studies of ethics in science that have focused on codes of ethics or student curricula as ways in which scientists develop an understanding of scientific ethics. Our project demonstrates that everyday interactions between the members of scientific research labs additionally shape, at a decidedly local level, how scientists understand and ultimately approach ethical decision-making in the scientific research process. (shrink)

Experimental vaccines are being developed for the treatment of ‘unhealthy lifestyles’ and associated chronic illnesses. Policymakers and other stakeholders will have to deal with the ethical issues that this innovation path raises: are there morally justified reasons to integrate these innovative biotechnologies in future health policies? Should public money be invested in further research? Focusing on the case of an experimental nicotine vaccine, this article explores the ethical aspects of ‘lifestyle vaccines’ for public health. Based on findings from a qualitative (...) study into a vaccine for smoking cessation, the article articulates possible value conflicts related to nicotine vaccination as an intervention in tobacco control. The ‘vaccinization’ of lifestyle disease piggybacks on the achievements of classic vaccines. Contrary to expectations of simplicity and success, quitting smoking with a vaccine requires a complex supportive network. Social justice and public trust may become important ethical challenges when deciding whether to use further public funds for research or whether to implement these innovative vaccines in the future. (shrink)

Research often characterized as “new materialist” has staged a return/turn to nature in social and critical theory by bringing “matter” into the purview of our research. While this growing impetus to take nature seriously fosters new types of interdisciplinarity and thus new resources for knowing our nature-cultural worlds, its capacity to deal with power’s imbrication in how we understand “nature” is curtailed by its failures to engage substantively with the epistemological interventions of postcolonial feminist science studies. The citational practices of (...) many new materialist thinkers eschew the existence of what Sandra Harding has called “a world of sciences.” I argue that the “science” privileged and often conflated with matter in new materialist storytelling is the same science destabilized by postcolonial feminist science studies. This does not mean that new materialist feminisms and postcolonial feminist science studies are necessarily at odds, as new materialist storytelling and prevailing conceptualizations of the postcolonial seem to suggest. On the contrary, I suggest that thinking creatively, capaciously, pluralistically, and thus irreverently with respect to the rules of science––about the boundaries and meanings of matter, “life,” and “humanness”––could be understood as a central project for a postcolonial feminist science studies. (shrink)

Though rapid collection of big data is ubiquitous across domains, from industry settings to academic contexts, the ethics of big data collection and research are contested. A nexus of data ethics issues is the concept of creep, or repurposing of data for other applications or research beyond the conditions of original collection. Data creep has proven controversial and has prompted concerns about the scope of ethical oversight. Institutional review boards offer little guidance regarding big data, and problematic research can still (...) meet ethical standards. While ethics seem concrete through institutional deployment, I frame ethics as produced. Informed by my ethnographic research at a large public university in the U.S., I explore ethics through two models: ethics as institutional procedures and ethics as acts and intentions. The university where I conducted fieldwork is the development grounds for a predictive model that uses student data to anticipate academic success. While students consent to data collection, the circumstances of consent and the degree to which they are informed are not so apparent, as many data are a product of creep. Drawing from interviews and participant observation with administrators, data scientists, developers, and students, I examine data ethics, from a larger institutional model to everyday enactments related to data creep. After demonstrating the limits of such models, I propose a remodeling of ethics that draws on recent works on data, justice, and refusal to pose generative questions for rethinking ethics in institutional contexts. (shrink)

This special issue explores intersections of feminism, postcolonialism, and technoscience. The papers emerged out of a 2014 research seminar on Feminist Postcolonial Science and Technology Studies at the Institute for Research on Women and Gender, University of Michigan. Through innovative engagement with rich empirical cases and theoretical trends in postcolonial theory, feminist theory, and STS, the papers trace local and global circulations of technoscience. They illuminate ways in which science and technology are imbricated in circuits of state power and global (...) inequality and in social movements resisting the state and neocolonial orders. The collection foregrounds the importance of feminist postcolonial STS to our understandings of technoscience, especially how power matters for epistemology and justice. (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)

In December 2010, the governor of Mississippi suspended the dual life sentences of two African American sisters who had been imprisoned for sixteen years on an extraordinary condition: that Gladys Scott donate a kidney to her ailing sister Jamie Scott. The Scott Sisters’ case is a highly unusual one, yet it is a revealing site for inquiry into US biopolitics more broadly. Close attention to the conditional release and its context demands a broader frame than traditional bioethics and helps to (...) push science and technology studies analysis of race past its conventional focus on genetics. This article draws on the Scott Sisters’ case as a site for interrogating the US context of racialized mass incarceration and kin-oriented and consumerist valorization of organ donation. Tensions between racialized exclusions, the promise of consumerist freedom, and the lack of expectations of the state are foundational to a distinctly American biological citizenship. By putting the Scott Sisters’ case into conversation with broader arguments about incarceration as a site of racialization and STS literatures of organ transplantation and of biological citizenship in diverse geographical sites, this article seeks to articulate some of the racialized contours of biopolitics in the United States. (shrink)

In this paper, I describe a collaborative project involving two feminist trained scientists1 in consultation with a bioethicist, a policy analyst, and a research scientist funded by the National Academies Keck Futures Initiative for the design and implementation of a training program for ethics in synthetic biology. In spring 2011, the project culminated in our coteaching an experimental graduate seminar on ethics and synthetic biology.Synthetic biology most commonly refers to an interdisciplinary field that aims to merge engineering and biology methods (...) to create new technologies. The promise is that these new technologies will solve the world’s most pressing problems: for example, they may provide us with cures.. (shrink)

This research explores the perspectives of academic physicists from three national contexts concerning their roles and responsibilities within the realm of science. Using a dataset comprised of 211 interviews with scientists working in China, the United States, and the United Kingdom, the study seeks to explain whether and in what manner physicists conceptualize scientific ethics within a global or national framework. The empirical findings bring to light disparities across nations in the physicists’ perceptions of what constitutes responsible mentorship and engagement (...) in public service. These cross-national variations underscore the moral agency of physicists as they navigate the ethical standards embraced by the global scientific community vis-à-vis those that are specific to their respective national contexts. The study’s empirical insights may carry significant implications for both policymakers and ethicists, underscoring the imperative of soliciting and acknowledging the perspectives of academic scientists working and living in disparate national contexts when formulating comprehensive science ethics frameworks. Such inclusive and context-aware approaches to shaping ethics in science can contribute to the cultivation of a more robust and universally relevant ethical foundation for the scientific community. (shrink)

This special issue of Science, Technology, & Human Values contains articles concerned with ethics in and around scientific practice. These articles ask how organizational routines both produce and diffuse concerns about the risks and benefits of scientific research and products, and why context remains elusive in formal ethical analysis. These cases are from diverse settings, with several touching on issues of economic inequality and participation in scientific research. Each article describes in some way how cultural and institutional configurations shape ethical (...) thinking and the distribution of goods and harms in science. (shrink)

Programs, policies, and technologies — particularly those concerned with health equity — are often designed with justice envisioned as the end goal. These policies or interventions, however, frequently fail to recognize how the beneficiaries have historically embodied the cumulative effects of marginalization, which undermines the effectiveness of the intended justice. These well-meaning attempts at justice are bounded by greater socio-historical constraints. Bounded justice suggests that it is impossible to attend to fairness, entitlement, and equity when the basic social and physical (...) infrastructures underlying them have been eroded by racism and other historically entrenched isms. Using the case of Brazil’s National Health Policy for the Black Population, this paper proposes that bounded justice can contribute to justice discourses by serving as a concept, a proffering to a multi-disciplinary conceptual framework, and a potential analytic for those interested in the design of policy, technology, and programmatic interventions towards health equity. (shrink)