Richard Tutton

Life, Science, and Biopower

This article critically engages with the influential theory of ‘‘molecularized biopower’’ and ‘‘politics of life’’ developed by Paul Rabinow and Nikolas Rose. Molecularization is assumed to signal the end of population-centred biopolitics and the disciplining of subjects as described by Foucault, and the rise of new forms of biosociality and biological citizenship. Drawing on empirical work in Science and Technology Studies (STS), we argue that this account is limited by a focus on novelty and assumptions about the transformative power of the genetic life sciences. We suggest that biopower consists of a more complex cluster of relationships between the molecular and the population. The biological existence of different human beings is politicized through different complementary and competing discourses around medical therapies, choices at the beginning and end of life, public health, environment, migration and border controls, implying a multiple rather than a singular politics of life.

The standardization of race and ethnicity in biomedical science editorials and UK biobanks

As the search for human genetic variation has become a priority for biomedical science, debates have resurfaced about the use of race and ethnicity as scientific classifications. In this paper we consider the relationship between race, ethnicity and genetics, using insights from science and technology studies (STS) about processes of classification and standardization. We examine how leading biomedical science journals attempted to standardize the classifications of race and ethnicity, and analyse how a sample of UK genetic scientists used the concepts in their research. Our content analysis of 11 editorials and related guidelines reveals variations in the guidance on offer, and it appears that there has been a shift from defining the concepts to prescribing methodological processes for classification. In qualitative interviews with 17 scientists, the majority reported that they had adopted socio-political classification schemes from state bureaucracy (for example, the UK Census) for practical reasons, although some scientists used alternative classifications that they justified on apparently methodological grounds. The different responses evident in the editorials and interviews can be understood as reflecting the balance of flexibility and stability that motivate standardization processes. We argue that, although a genetic concept of race and ethnicity is unlikely to wholly supplant a socio-political one, the adoption of census classifications into biomedical research is an alignment of state bureaucracy and science that could have significant consequences.

Constructing participation in genetic databases : Citizenship, governance, and ambivalence

This paper discusses the discourse of ‘participation’ in the context of genetic databases. Focusing on UK Biobank, it suggests that this discourse can be seen as a reflexive institutional response to public ambivalence towards science and expertise. Drawing on empirical evidence from focus groups, I explore how people from various backgrounds constructed and contested two different kinds of participation in UK Biobank. The first relates to people providing research materials to genetic databases and the second to people becoming ‘co-decision makers’ in these projects. My analysis highlights how focus groups positioned themselves and others in relation to UK Biobank and drew on a variety of ‘discursive repertoires’, such as altruism, public ignorance, expertise, and lay empowerment. I conclude that discourses of participation reflect the way people position themselves and others - as experts, publics, patients, or research subjects - in relation to the opportunities and uncertainties of new biomedical research.

Promising pessimism : reading the futures to be avoided in biotech

A number of science and technology studies (STS) scholars have suggested that the performativity of the ‘forward-looking statement’ is an important institutional element of contemporary biocapital. This paper considers how, when making projections that set up expectations about their futures, firms also acknowledge and detail the risk factors that they face in their operations. In other words, in addition to projecting optimistic scenarios, firms advance much more pessimistic images of futures that they wish to avoid: possible failures, disappointments and financial losses. I examine such pessimistic projections in company filings to the US Securities and Exchange Commission (SEC) and investigate their discursive character. I ask what value such pessimism might hold for STS scholars interested in the mangle of science and capital. I sample the SEC filings of three companies: deCODE Genetics, DNAPrint Genomics Inc. and NitroMed Inc. In their own particular ways, these projections exemplify the volatility and the promise of the life sciences in the 21st century. My reading shows that such pessimistic risk factor statements provide interesting commentary on the dynamics of risk and innovation in the context of contemporary biocapital, raising questions to which analysts to date have given little attention.

They want to know where they came from: population genetics, identity, and family genealogy.

This paper discusses the changing relationship between population genetics, family genealogy and identity. It reports on empirical research with participants in a genetic study who anticipated that personal feedback on the analysis of their donated samples would elucidate aspects of their own family genealogies. The paper also documents how geneticists, building on the practices of offering personal feedback to research participants, have developed genetic tests marketed directly to people wishing to trace their ancestry. Some of the social and ethical issues raised by this development in the use of genetic testing are considered.

Racial Categories in Medicine: A Failure of Evidence-Based Practice?

Race and ethnicity are imprecise markers of the genotypic and sociocultural determinants of health, argue the authors.

‘Ethics was here’: Studying the language-games of ethics in the case of UK Biobank

Recent years have seen a proliferation in discourses on ethics, not least in relation to the establishment of large genetic databases, so-called biobanks. Through an analysis of UK Biobank and its so-called Ethics and Governance Framework, this paper suggests viewing the increased attention paid to ethics as part of a special mode of regulation created through what Wittgenstein called language-games. This article outlines selected aspects of this mode of regulation focusing on its political implications, namely in relation to (1) the representation of individual choice, (2) the use of public consultation, (3) the effects of ethical discourses on the establishment of regimes for property exchange, (4) and changing conceptions of governance.

Genotyping the future: scientists' expectations about race/ ethnicity after BiDil

The ongoing debate about the FDA approval of BiDil in 2005 demonstrates how the first racially/ethnically licensed drug is entangled in both Utopian and dystopian future visions about the continued saliency of race/ethnicity in science and medicine. Drawing on the sociology of expectations, this paper analyzes how scientists in the field of pharmacogenetics are constructing certain visions of the future with respect to the use of social categories of race/ethnicity and the impact of high-throughput genotyping technologies that promise to transform scientific practices.

Can science alone improve the measurement and communication of race and ethnicity in genetic research? Exploring the strategies proposed by Nature Genetics

The long-standing concerns about the measurement and communication of race and ethnicity in genetic research have spilled over into the editorial columns of a growing number of biomedical journals. Nature Genetics has played a prominent role in this debate with a series of editorials published between 2000–2004, culminating in the publication of an open-access Special Issue (Genetics for the human race) in November 2004. The Special Issue brought together contemporary research on the relationship between race, ethnicity and genetic variation, and a range of views on the social and ethical implications of this research. In this article we analyse interviews with each of three the editors in charge of Nature Genetics during this period to show that scientific concerns related to the measurement and communication of race and ethnicity in genetic research had been responsible for making this a ‘special issue’ for the journal. Two broad strategies for tackling these concerns were identified from an analysis of contributions to the Special Issue: continuing to use racial and ethnic categories until such time as these become obsolete; or replacing racial and ethnic categories with alternatives based on socio-cultural and geographical ancestry. We also identified additional suggestions for improving the communication of genetic findings disaggregated by race or ethnicity, which were: developing guidelines for measurement and interpretation; and greater ‘community engagement’. We argue that neither of the broad strategies and neither of the suggestions for improving communication can be wholly effective. We suggest that this is because these proposals do not adequately confront the notion that race and ethnicity are difficult concepts to operationalize or examine in scientific research precisely because they have meanings and uses which exist beyond the domain of scientific practice or control.

Pharmacogenomic biomarkers in drug labels: what do they tell us?

AIM This article investigates the number of drugs on the market with pharmacogenomics (PGx) biomarker data in their labels using two public sources - the US FDA and the PharmGKB. METHODS The article analyzes the FDA Table of Pharmacogenomic Biomarkers in Drug Labels to show the number of drugs with PGx biomarker information in their labels. Scrutinizing the language of labels, it also engages with whether this information is intended to direct clinicians to take particular actions or not, and whether biomarker information is included on grounds of drug efficacy or to improve safety. The FDA table is compared to the PharmGKB Drug Labels with PGx info database to highlight how they differ in the number of drugs that they include. CONCLUSION Analysis of the FDA and the PharmGKB data show that approximately 12% of drugs licensed in the period 1998-2012 had PGx biomarker information included in their labels at the time of their approval. Of that number, labels direct clinicians to utilize PGx testing prior to prescribing treatments in only 14 cases. This clearly falls short of expectations many had in the 1990s about the transformative impact of PGx. In most cases, the inclusion of this information currently has limited or no direct clinical utility.