Sahra Gibbon

Undone Science: Charting Social Movement and Civil Society Challenges to Research Agenda Setting

‘‘Undone science’’ refers to areas of research that are left unfunded, incomplete, or generally ignored but that social movements or civil society organizations often identify as worthy of more research. This study mobilizes four recent studies to further elaborate the concept of undone science as it relates to the political construction of research agendas. Using these cases, we develop the argument that undone science is part of a broader politics of knowledge, wherein multiple and competing groups struggle over the construction and implementation of alternative research agendas. Overall, the study demonstrates the analytic potential of the concept of undone science to deepen understanding of the systematic nonproduction of knowledge in the institutional matrix of state, industry, and social movements that is characteristic of recent calls for a ‘‘new political sociology of science.’’

Admixture in Latin America: Geographic Structure, Phenotypic Diversity and Self-Perception of Ancestry Based on 7,342 Individuals

The current genetic makeup of Latin America has been shaped by a history of extensive admixture between Africans, Europeans and Native Americans, a process taking place within the context of extensive geographic and social stratification. We estimated individual ancestry proportions in a sample of 7,342 subjects ascertained in five countries (Brazil, Chile, Colombia, México and Perú). These individuals were also characterized for a range of physical appearance traits and for self-perception of ancestry. The geographic distribution of admixture proportions in this sample reveals extensive population structure, illustrating the continuing impact of demographic history on the genetic diversity of Latin America. Significant ancestry effects were detected for most phenotypes studied. However, ancestry generally explains only a modest proportion of total phenotypic variation. Genetically estimated and self-perceived ancestry correlate significantly, but certain physical attributes have a strong impact on self-perception and bias self-perception of ancestry relative to genetically estimated ancestry.

Breast Cancer Genes and the Gendering of Knowledge

© Sahra Gibbon 2007. All rights reserved. The book examines the social and cultural context of new genetic knowledge associated with breast cancer. It looks at how this knowledge and technologies are used and received in two contrasting social arenas - cancer genetic clinics and a breast cancer research charity.

Genomics as public health? Community genetics and the challenge of personalised medicine in Cuba

Making use of a comparative perspective on the emergence of ‘breast cancer genetics’ in the different cultural context of the UK and Cuba, this article examines the tensions between the modern promise of genomics as personalised medicine and a commitment to public health. Focusing primarily on the Cuba context and drawing on ethnographic research as part of a collaborative project working with genetic professionals and publics, the article examines the particular technologies, identities and socialities at stake in an emerging and evolving field of genetic medicine. It highlights how long-standing continuities in the commitment to the equitable provision of public health, particularly as this relates to ‘family medicine’, are central to understanding the scope and expansion of ‘community genetics’ interventions, even when at the level of local practice, public health is also now subject to the unequal dynamics of economic necessity through the working out of ‘lo informal’. Illuminating the different ways agency, risk, responsibility, citizenship and activism get configured by and between publics and health professionals in Cuba, the article reveals the challenges and opportunities posed by predictive genomic medicine in relation to the dynamic and shifting terrain of public health.

Lancet Commission: Stem cells and regenerative medicine

In this Commission, we argue that a combination of poor quality science, unclear funding models, unrealistic hopes, and unscrupulous private clinics threatens regenerative medicines social licence to operate. If regenerative medicine is to shift from mostly small-scale bespoke experimental interventions into routine clinical practice, substantial rethinking of the social contract that supports such research and clinical practice in the public arena will be required. For decades, stem cell therapy was predominantly limited to bone marrow transplantation for haematological diseases and epidermis transplantation for large burns. Tissue engineering and gene therapy faced huge challenges on their way to clinical translation—a situation that began to change only at the end of the 1990s. The past 10 years have seen an exponential growth in experimental therapies, broadly defined as regenerative medicine, entering the clinical arena. Results vary from unequivocal clinical efficacy for previously incurable and devastating diseases to (more frequently) a modest or null effect. The reasons for these widely different outcomes are starting to emerge. At this stage in their evolution, these experimental therapies (which include, but are not limited to, cell and gene therapy, tissue engineering, and new generation drugs) are necessarily financially expensive. Rigorous and costly clinical-grade procedures have to be followed in the development of medicinal products (involving cells, genetically manipulated cells, viral vectors, or biomaterials with or without cells), often produced in a very limited run. The cost of developing sufficiently high-quality trials means that only wealthier countries are able to fund them. Although public investments in this field are massive internationally, they do not carry guaranteed commercial returns. Compared with conventional drug development, such products follow a highly uncertain route to market. Furthermore, new therapies expose patients to risks, some of which are difficult to predict even with inbuilt safeguards. Despite the relatively small number of clinical successes, optimism and excitement about the potential effect or implications of this field remain great. This enthusiasm has led to gaps between peoples expectations that new therapies should be available, often inflated by media reports, and the realities of translating regenerative technologies into clinical practice. The same environment is also permissive of one-off compassionate applications and poorly regulated trials. Indeed, the number of poorly regulated clinics has grown; clinics that appeal to desperate patients and their families, who, in the absence of reliable clinical knowledge from trials, cannot be adequately informed to assess the risks and benefits. These ethical and governance issues pose a challenge to scientists in engaging with the public, the press, and decision-making bodies in different national health systems. Political agendas might not coincide with the public good. In poorly regulated states, the authorisation of a novel therapy might be politically attractive, even when efficacy is unconfirmed, and the cost to taxpayers means other patients are deprived of established and effective therapies. These challenges are difficult to address and solve. We recommend a solution that lies in a coordinated strategy with four pillars: better science, better funding models, better governance, and better public and patient engagement.

Pharmacogenomics, human genetic diversity and the incorporation and rejection of color/race in Brazil.

Public funding for research on the action of drugs in countries like the United States requires that racial classification of research subjects should be considered when defining the composition of the samples as well as in data analysis, sometimes resulting in interpretations that Whites and Blacks differ in their pharmacogenetic profiles. In Brazil, pharmacogenomic results have led to very different interpretations when compared with those obtained in the United States. This is explained as deriving from the genomic heterogeneity of the Brazilian population. This article argues that in the evolving field of pharmacogenomics research in Brazil there is simultaneously both an incorporation and rejection of the US informed race-genes paradigm. We suggest that this must be understood in relation to continuities with national and transnational history of genetic research in Brazil, a differently situated politics of Brazilian public health and the ongoing valorization of miscegenation or race mixture by Brazilian geneticists as a resource for transnational genetic research. Our data derive from anthropological investigation conducted in INCA (Brazilian National Cancer Institute), in Rio de Janeiro, with a focus on the drug warfarin. The criticism of Brazilian scientists regarding the uses of racial categorization includes a revision of mathematical algorithms for drug dosage widely used in clinical procedures around the world. Our analysis reveals how the incorporation of ideas of racial purity and admixture, as it relates to the efficacy of drugs, touches on issues related to the possibility of application of pharmaceutical technologies on a global scale.

Family medicine, 'La Herencia' and breast cancer; understanding the (dis)continuities of predictive genetics in Cuba

Building on social science research examining the relationship between genetic knowledge, identity and the family this paper takes the cultural context of Cuba as a site for critical ethnographic engagement. The paper makes use of research working with a range of Cuban publics and genetic professionals as part of a collaborative research project exploring the social and cultural context of health beliefs about breast cancer. It illuminates the contrasting ways in which genomic knowledge linked to an increased risk of breast cancer is perceived, communicated, and acted upon. It is argued that the particular meaning and significance of genetic risk linked to breast cancer in this context must be examined in relation to long standing institutional practices relating to public health care provision. The focus on ‘the family’ in the provision of Cuban health provides a particularly viable foundation for the expansion of what is described as ‘community genetics’, including the collation of family history details for common complex diseases such as breast cancer. Nevertheless specific public perceptions of risk related to breast cancer and the difficulties of discussing a diagnosis of cancer openly in the family point to the very specific challenges for the translation and application of predictive interventions in Cuba. In summary the dynamic interrelationship between public health, perceptions of risk or health beliefs about the causes of the disease and attitudes towards cancer diagnosis within the family point to both continuities and discontinuities in the way that genomic interventions linked to breast cancer are unfolding as part of a dynamic yet still ostensibly socialist project of health care in Cuba.

Nurturing Women and the BRCA Genes: Gender, Activism and the Paradox of Health Awareness

This paper explores the relationship between breast cancer activism and a newly emergent arena of ‘predictive’ medicine, breast cancer genetics. Drawing on ethnographic research in UK cancer genetic clinics, it explores the way the goals and gendered values of a certain kind of breast cancer activism operate at the interface between patients and practitioners. It examines how the morality of health awareness and the value female nurturance are implicated in and configured by clinical encounters. Outlining the dense and dynamic ‘traffic’ around the work of transmission, the paper examines how the same gendered values that may enable this field of practice can also result in uneasy consequences for patients, their kin, as well as practitioners. Exploring these intersections demonstrates the scope and challenges for knowledge and care, as well as the paradoxical value of health awareness in an emerging field of genetic medicine.

Introduction. Public Health Genomics: anthropological interventions in the quest for molecular medicine

We introduce this special issue of Medial Anthropology Quarterly on public health genomics by exploring both the unique contribution of ethnographic sensibility that medical anthropologists bring to the study of genomics and some of the key insights offered by the essays in this collection. As anthropologists, we are concerned with the power dynamics and larger cultural commitments embedded in practices associated with public health. We seek to understand, first, the broad significance of genomics as a cultural object and, second, the social action set into motion as researchers seek to translate genomic knowledge and technology into public health benefits.We introduce this special issue of Medial Anthropology Quarterly on public health genomics by exploring both the unique contribution of ethnographic sensibility that medical anthropologists bring to the study of genomics and some of the key insights offered by the essays in this collection. As anthropologists, we are concerned with the power dynamics and larger cultural commitments embedded in practices associated with public health. We seek to understand, first, the broad significance of genomics as a cultural object and, second, the social action set into motion as researchers seek to translate genomic knowledge and technology into public health benefits.

Translating Population Difference: The Use and Re-Use of Genetic Ancestry in Brazilian Cancer Genetics

ABSTRACT In the past ten years, there has been an expansion of scientific interest in population genetics linked to both understanding histories of human migration and the way that population difference and diversity may account for and/or be implicated in health and disease. In this article, I examine how particular aspects of a globalizing research agenda related to population differences and genetic ancestry are taken up in locally variant ways in the nascent field of Brazilian cancer genetics. Drawing on a broad range of ethnographic data from clinical and nonclinical contexts in the south of Brazil, I examine the ambiguities that attention to genetic ancestry generates, so revealing the disjunctured and diverse ways a global research agenda increasingly orientated to questions of population difference and genetic ancestry is being used and reused.