48 research outputs found

    Ancestry: How researchers use it and what they mean by it

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    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 “ancestry” 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 many—including geneticists—ancestry 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 “biological” construct, and it does not represent a “safe haven” 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

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    There is a scientific and ethical imperative to embrace a multidimensional, continuous view of ancestry and move away from continental ancestry categorie

    The Postgenomic Condition: Ethics, Justice, and Knowledge after the Genome

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    Genetic Ancestry Testing among White Nationalists

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    Using a data set drawn from the website Stormfront, this paper presents a qualitative analysis of online discussions of white nationalist individuals’ 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 “purity,” 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 individuals’ 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 “racial realist” interpretive framework that departs from canons of genetic science but cannot be dismissed simply as ignorant

    Disentangling Public Participation In Science and Biomedicine

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    BACKGROUND: This article provides a framework for disentangling the concept of participation, with emphasis on participation in genomic medicine. We have derived seven ‘dimensions’ 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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