Responsible research and innovation: A manifesto for empirical ethics?

In 2013 the Nuffield Council on Bioethics launched their report Novel Neurotechnologies: Intervening in the Brain. The report, which adopts the European Commission's notion of Responsible Research and Innovation, puts forward a set of priorities to guide ethical research into, and the development of, new therapeutic neurotechnologies. In this paper, we critically engage with these priorities. We argue that the Nuffield Council's priorities, and the Responsible Research and Innovation initiative as a whole, are laudable and should guide research and innovation in all areas of healthcare. However, we argue that operationalising Responsible Research and Innovation requires an in-depth understanding of the research and clinical contexts. Providing such an understanding is an important task for empirical ethics. Drawing on examples from sociology, science and technology studies, and related disciplines, we propose four avenues of social science research which can provide such an understanding. We suggest that these avenues can provide a manifesto for empirical ethics.The paper derives from a project that was funded by Wellcome Trust (Wellcome Trust Biomedical Strategic Award 086034)

Identity, community and care in online accounts of hereditary colorectal cancer syndrome

Sociological literature has explored how shifts in the point at which individuals may be designated as diseased impact upon experiences of ill health. Research has shown that experiences of being genetically “at risk” are shaped by and shape familial relations, coping strategies, and new forms of biosociality. Less is known about how living with genetic risk is negotiated in the everyday and over time, and the wider forms of identity, communities and care this involves. This article explores these arrangements drawing on online bloggers’ accounts of Familial Adenomatous Polyposis (FAP). We show how accounts of genetic risk co-exist with more palpable experiences of FAP in everyday life, notably the consequences of prophylactic surgeries. We consider how the act of blogging represents but also constitutes everyday experiences of hereditary cancer syndrome as simultaneously ordinary and exceptional, and reflect on the implications of our analysis for understanding experiences of genetic cancer risk

Synthetic biology: ethical ramifications 2009

During 2007 and 2008 synthetic biology moved from the manifesto stage to research programs. As of 2009, synthetic biology is ramifying; to ramify means to produce differentiated trajectories from previous determinations. From its inception, most of the players in synthetic biology agreed on the need for (a) rationalized design and construction of new biological parts, devices, and systems as well as (b) the re-design of natural biological systems for specified purposes, and that (c) the versatility of designed biological systems makes them suitable to address such challenges as renewable energy, the production of inexpensive drugs, and environmental remediation, as well as providing a catalyst for further growth of biotechnology. What is understood by these goals, however, is diverse. Those assorted understandings are currently contributing to different ramifications of synthetic biology. The Berkeley Human Practices Lab, led by Paul Rabinow, is currently devoting its efforts to documenting and analyzing these ramifications as they emerge

Dilemmas in doing insider research in professional education

This article explores the dilemmas I encountered when researching social work education in England as an insider researcher who was simultaneously employed as an educator in the host institution. This was an ethnographic project deploying multiple methods and generating rich case study material which informed the student textbook Becoming a Social Worker the four-year period of the project. First, ethical dilemmas emerged around informed consent and confidentiality when conducting surveys of students and reading their portfolios. Second, professional dilemmas stemmed from the ways in which my roles as a researcher, academic tutor, social worker and former practice educator converged and collided. Third, political dilemmas pertained to the potential for the project to crystallize and convey conflicts among stakeholders in the university and community. Since the majority of research in social work education is conducted by insiders, we have a vital interest in making sense of such complexity

Biodigital publics: personal genomes as digital media artifacts

The recent proliferation of personal genomics and direct-to-consumer (DTC) genomics has attracted much attention and publicity. Concern around these developments has mainly focused on issues of biomedical regulation and hinged on questions of how people understand genomic information as biomedical and what meaning they make of it. However, this publicity amplifies genome sequences which are also made as internet texts and, as such, they generate new reading publics. The practices around the generation, circulation and reading of genome scans do not just raise questions about biomedical regulation, they also provide the focus for an exploration of how contemporary public participation in genomics works. These issues around the public features of DTC genomic testing can be pursued through a close examination of the modes of one of the best known providers—23andMe. In fact, genome sequences circulate as digital artefacts and, hence, people are addressed by them. They are read as texts, annotated and written about in browsers, blogs and wikis. This activity also yields content for media coverage which addresses an indefinite public in line with Michael Warner’s conceptualisation of publics. Digital genomic texts promise empowerment, personalisation and community, but this promise may obscure the compliance and proscription associated with these forms. The kinds of interaction here can be compared to those analysed by Andrew Barry. Direct-to-consumer genetics companies are part of a network providing an infrastructure for genomic reading publics and this network can be mapped and examined to demonstrate the ways in which this formation both exacerbates inequalities and offers possibilities for participation in biodigital culture

Rights or containment? The politics of Aboriginal cultural heritage in Victoria

Aboriginal cultural heritage protection, and the legislative regimes that underpin it, constitute important mechanisms for Aboriginal people to assert their rights and responsibilities. This is especially so in Victoria, where legislation vests wide-ranging powers and control of cultural heritage with Aboriginal communities. However, the politics of cultural heritage, including its institutionalisation as a scientific body of knowledge within the state, can also result in a powerful limiting of Aboriginal rights and responsibilities. This paper examines the politics of cultural heritage through a case study of a small forest in north-west Victoria. Here, a dispute about logging has pivoted around differing conceptualisations of Aboriginal cultural heritage values and their management. Cultural heritage, in this case, is both a powerful tool for the assertion of Aboriginal rights and interests, but simultaneously a set of boundaries within which the state operates to limit and manage the challenge those assertions pose. The paper will argue that Aboriginal cultural heritage is a politically contested and shifting domain structured around Aboriginal law and politics, Australian statute and the legacy of colonial history

Accomplice, patron, go-between? A role to play with poor migrant Qur’anic students in northern Nigeria

What does it mean to conduct ethnographic research in a context where inequalities are pervasive? Drawing on experiences conducting research with poor migrant Qur’anic students (almajirai) in Kano, northern Nigeria, this article explores the challenges of establishing productive and ethical research relationships with informants whose social and socioeconomic status is significantly lower than that of the researcher. The article argues that large socioeconomic and educational inequalities demand a rethinking of the subject positions available to researchers in such contexts. In the article, I consider in turn my roles as an ‘accomplice’ of exclusionary elite behaviour, as a ‘patron’ for my informants, and as a ‘go-between’ facilitating access for them to otherwise inaccessible ‘social microworlds’

Locative media and data-driven computing experiments

Over the past two decades urban social life has undergone a rapid and pervasive geocoding, becoming mediated, augmented and anticipated by location-sensitive technologies and services that generate and utilise big, personal, locative data. The production of these data has prompted the development of exploratory data-driven computing experiments that seek to find ways to extract value and insight from them. These projects often start from the data, rather than from a question or theory, and try to imagine and identify their potential utility. In this paper, we explore the desires and mechanics of data-driven computing experiments. We demonstrate how both locative media data and computing experiments are ‘staged’ to create new values and computing techniques, which in turn are used to try and derive possible futures that are ridden with unintended consequences. We argue that using computing experiments to imagine potential urban futures produces effects that often have little to do with creating new urban practices. Instead, these experiments promote Big Data science and the prospect that data produced for one purpose can be recast for another and act as alternative mechanisms of envisioning urban futures

STS in management education: connecting theory and practice

This paper explores the value of science and technology studies (STS) to management education. The work draws on an ethnographic study of second year management undergraduates studying decision making. The nature and delivery of the decision making module is outlined and the value of STS is demonstrated in terms of both teaching method and module content. Three particular STS contributions are identified and described: the social construction of technological systems; actor network theory; and ontological politics. Affordances and sensibilities are identified for each contribution and a discussion is developed that illustrates how these versions of STS are put to use in management education. It is concluded that STS has a pivotal role to play in critical management (education) and in the process offers opportunities for new forms of managin