Chapter 3. Flexible Eugenics

This special issue of Studies of Science highlights ongoing debates concerning race, genomics, and disease. Some of the papers examine the production of disease etiology research, pharmaceutical drug response, or DNA genealogy tests, while others analyze institutional consequences and challenges arising from contemporary biomedicine, such as medical education and recruiting subjects for clinical research. In this introduction, we outline major issues that provide background and foreground for the specific studies that follow, and end with a brief description of the papers. First, we briefly outline the debates around contemporary genetics research on race, ancestry, population, and disease. Second, we describe genomics and disease research projects on the genetics of populations that provide the ground on which the past debates have played, as well as introduce very recent projects that may change the tenor of future debates. We discuss why some scientists argue that their research does not biologize race, while others argue that their findings do demonstrate racial differences. Finally, we relate these complex genomic sciences and their biopolitical debates to relevant STS themes.

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Introduction: Race, Genetics, and Disease

Fujimura

2008

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Generating sociability to drive science: Patient advocacy organizations and genetics research

Panofsky

2010

Soc Stud Sci

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This paper examines how patient advocacy organizations (PAOs) representing those with rare genetic disorders drive research to their concerns. The rarity of the diseases produces a basic condition of marginalization: small numbers of widely distributed disease sufferers. The lack of promise of an eventual market makes it difficult to attract the economic and biological resources necessary for sustained research. My analysis relies mainly on 21 interviews with leaders from nine PAOs and scientists involved with them, and seeks to understand how PAOs try to attract and influence scientific research. Using a comparative framework, I find that the five main mechanisms emphasized in the literature--economic resources, social movement-style mobilization, moving early, lay expertise, and organizational controls--cannot fully explain the differences in strategies and relationships among members of my PAO sample. I propose instead to show how 'sociability'--forging close relationships with scientists and orchestrating relationships among them--enables PAOs to drive research to their concerns. I show how the strategic manipulation of sociability can give PAOs substantial influence over the research process. However, the forms of sociability that yield the greatest effects are difficult to achieve, and most forms of relationship-building offer PAOs much less influence on research.

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Genomic designation: How genetics can delineate new, phenotypically diffuse medical categories

Navon

2011

Soc Stud Sci

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This paper reports and discusses 'genomic designation' as a way of classifying people. In genomic designation the object of biomedical analysis--and the concomitant medical category that is subject to scientific, clinical, and social action--is delineated on a genomic basis, while the phenotype is decentralized and tabulated post factum. Unlike prominent sociological concepts such as biosociality or geneticization, where genetic proclivities for or explanations of phenotypic categories affect social processes, genomic designation treats characteristics of the genome as the essential referent of new categories of illness. I outline the relevant sociological literature and the shift to what Nikolas Rose has called the 'molecular gaze' before explicating the concept ofgenomic designation and its half-century history. I use 22q13 Deletion/Phelan-McDermid syndrome as an example of genomic designation: investigations into the deletion of genetic material at site q13 on the 22nd chromosome preceded and made practicable the delineation of a syndrome more than a decade later, even though the associated phenotype is not distinct enough for diagnosis. Finally, I discuss the implications of this turn to 'rigidly designate' kinds of people according to observations made at the level of the genome and outline directions for future research.

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Chapter 3. Flexible Eugenics

Cited by 6 publications

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Introduction: Race, Genetics, and Disease

Introduction: Race, Genetics, and Disease

Generating sociability to drive science: Patient advocacy organizations and genetics research

Genomic designation: How genetics can delineate new, phenotypically diffuse medical categories

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