48 research outputs found
Ancestry: How researchers use it and what they mean by it
Background: Ancestry is often viewed as a more objective and less objectionable population descriptor than race or ethnicity. Perhaps reflecting this, usage of the term âancestryâ is rapidly growing in genetics research, with ancestry groups referenced in many situations. The appropriate usage of population descriptors in genetics research is an ongoing source of debate. Sound normative guidance should rest on an empirical understanding of current usage; in the case of ancestry, questions about how researchers use the concept, and what they mean by it, remain unanswered.Methods: Systematic literature analysis of 205 articles at least tangentially related to human health from diverse disciplines that use the concept of ancestry, and semi-structured interviews with 44 lead authors of some of those articles.Results: Ancestry is relied on to structure research questions and key methodological approaches. Yet researchers struggle to define it, and/or offer diverse definitions. For some ancestry is a genetic concept, but for manyâincluding geneticistsâancestry is only tangentially related to genetics. For some interviewees, ancestry is explicitly equated to ethnicity; for others it is explicitly distanced from it. Ancestry is operationalized using multiple data types (including genetic variation and self-reported identities), though for a large fraction of articles (26%) it is impossible to tell which data types were used. Across the literature and interviews there is no consistent understanding of how ancestry relates to genetic concepts (including genetic ancestry and population structure), nor how these genetic concepts relate to each other. Beyond this conceptual confusion, practices related to summarizing patterns of genetic variation often rest on uninterrogated conventions. Continental labels are by far the most common type of label applied to ancestry groups. We observed many instances of slippage between reference to ancestry groups and racial groups.Conclusion: Ancestry is in practice a highly ambiguous concept, and far from an objective counterpart to race or ethnicity. It is not uniquely a âbiologicalâ construct, and it does not represent a âsafe havenâ for researchers seeking to avoid evoking race or ethnicity in their work. Distinguishing genetic ancestry from ancestry more broadly will be a necessary part of providing conceptual clarity
Getting Genetic Ancestry Right for Science and Society
There is a scientific and ethical imperative to embrace a multidimensional,
continuous view of ancestry and move away from continental ancestry categorie
How White nationalists mobilize genetics: From genetic ancestry and human biodiversity to counterscience and metapolitics.
Genetic Ancestry Testing among White Nationalists
Using a data set drawn from the website Stormfront, this paper presents a qualitative analysis of online discussions of white nationalist individualsâ genetic ancestry test (GAT) results. Seeking genetic confirmation of personal identities and having a strong ideology of the genetic basis of race and the value of white âpurity,â white nationalists using GATs are sometimes confronted with information they consider evidence of non-white or non-European ancestry. Despite their essentialist views of race, Stormfront posters use GAT information to police individualsâ membership far less commonly than working to develop a variety of scientific and anti-scientific responses enabling them to repair identities by rejecting or reinterpreting GAT results. Simultaneously, however, Stormfront posters use the particular relationships made visible by GATs to debate the collective boundaries and constitution of white nationalism. Bricoleurs with genetic knowledge, white nationalists use a âracial realistâ interpretive framework that departs from canons of genetic science but cannot be dismissed simply as ignorant
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Ambiguity and Scientific Authority: Population Classification in Genomic Science
The molecularization of race thesis suggests geneticists are gaining greater authority to define human populations and differences, and they are doing so by increasingly defining them in terms of U.S. racial categories. Using a mixed methodology of a content analysis of articles published in Nature Genetics (in 1993, 2001, and 2009) and interviews, we explore geneticistsâ population labeling practices. Geneticists use eight classification systems that follow racial, geographic, and ethnic logics of definition. We find limited support for racialization of classification. Use of quasi-racial âcontinentalâ terms has grown over time, but more surprising is the persistent and indiscriminate blending of classification schemes at the field level, the article level, and within-population labels. This blending has led the practical definition of âpopulationâ to become more ambiguous rather than standardized over time. Classificatory ambiguity serves several functions: it helps geneticists negotiate collaborations among researchers with competing demands, resist bureaucratic oversight, and build accountability with study populations. Far from being dysfunctional, we show the ambiguity of population definition is linked to geneticistsâ efforts to build scientific authority. Our findings revise the long-standing theoretical link between scientific authority and standardization and social order. We find that scientific ambiguity can function to produce scientific authority
Disentangling Public Participation In Science and Biomedicine
BACKGROUND: This article provides a framework for disentangling the concept of participation, with emphasis on participation in genomic medicine. We have derived seven âdimensionsâ of participation that are most frequently invoked in the extensive, heterogeneous literature on participation. To exemplify these dimensions, we use material from a database of 102 contemporary cases of participation, and focus here on cases specific to science and medicine. We describe the stakes of public participation in biomedical research, with a focus on genomic medicine and lay out the seven dimensions. DISCUSSION: We single out five cases of participation that have particular relevance to the field of genomic medicine, we apply the seven dimensions to show how we can differentiate among forms of participation within this domain. SUMMARY: We conclude with some provocations to researchers and some recommendations for taking variation in participation more seriously
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The Self-Fulfilling Process of Clinical Race Correction: The Case of Eighth Joint National Committee Recommendations
There is growing attention to how unfounded beliefs about biological differences between racial groups affect biomedical research and health care, in part, through race adjustment in clinical tools. We develop a case study of the Eighth Joint National Committee (JNC 8)'s 2014 Evidence-Based Guideline for the Management of High Blood Pressure in Adults, which recommends a distinct initial hypertension treatment for Black versus nonblack patients. We analyze the historical context, study design, and racialized findings of the Antihypertensive and Lipid-Lowering Treatment to Prevent Heart Attack Trial (ALLHAT) that informed development of the guideline. We argue that ALLHAT's racialized outcomes emanated from a poor and artificial study design and analysis weakened by implicit assumptions about race as biological. We show that the acceptance and utilization of ALLHAT for race correction arises from its historical context within the "inclusion-and-difference paradigm" and its indication of the inefficacy of angiotensin-converting-enzyme inhibitors for Black patients, which follows from the enduring, yet, refuted slavery hypertension hypothesis. We demonstrate that the JNC 8 guideline displays the self-fulfilling process of racial reasoning: presuppositions about racial differences inform the design and interpretation of research, which then conceptually reinforce ideas about racial differences leading to differential medical treatment. We advocate for the abolition of race adjustment and the integration of structural competency, biocritical inquiry, and race-conscious medicine into biomedical research and clinical medicine to disrupt the use of race as a proxy for ancestry, environment, and social treatment and to address the genuine determinants of racialized disparities in hypertension
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Trying to make race science the "civil" science: charisma in the race and intelligence debates.
When studying science contexts, scholars typically position charismatic authority as an adjunct or something that provides a meaning-laden boost to rational authority. In this paper, we re-theorize these relationships. We re-center charismatic authority as an interpretive resource that allows scientists and onlookers to recast a professional conflict in terms of a public drama. In this mode, both professionals and lay enthusiasts portray involvement in the scientific process as a story of suppression and persecution, in which only a few remarkable figures can withstand scrutiny and take on challengers with dignity. Description and elaboration of these figures and the folklore surrounding them sets in motion the interpretive processes by which some actors become charismatic leaders and others charismatic followers within science, ultimately providing alternative symbolic resources for an embattled research agenda to accrue legitimacy. To illustrate, we use the case of Arthur Jensen - a deceased intelligence researcher and the intellectual father to contemporary texts like The Bell Curve - and the circles of hero worship that admirers inside and outside academia have created to praise him. Using this perspective to study Jensen and his admirers demonstrates how the perennial race and intelligence debates gain a kind of symbolic power, unrelated to their scientific merit or racist appeal, which enables such debates to thrive and persist in the public sphere. More generally, our approach identifies contemporary processes by which scientific ideas can gain public authority even when their intellectual merit has been deemed dubious