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Embodied innovation and regulation of medical technoscience: transformations in cancer patienthood

a , b

Law, innovation and technology

Cancer, genomics, patients, participation, work

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      Abstract

      Biomedical advances are transforming the diagnosis and treatment of disease. Patienthood is also transforming, as patients actively participate in research, innovation and regulation of novel technologies and therapies. In this paper we explore the new kinds of practices that patients are performing in their roles as research subject, co-researchers, donors, campaigners, representatives and consumers of novel stratified therapies. We outline their embodied contributions to clinical trials, biobanks and stratified therapies prior to, during and after having cancer. Exploring how patienthood involves donating more than tissue or data to these developments, we consider their emotional and identity work which informs and shapes the novel diagnostics and therapies being developed. We also consider how this kind of work is stratified according to the social and biological location of participants, and end by reflecting on the implications of our analysis for the organisation and regulation of biomedicine.

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      Most cited references 52

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      Performative Acts and Gender Constitution: An Essay in Phenomenology and Feminist Theory

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        The missing voice of patients in drug-safety reporting.

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          Liberal government and techniques of the self

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            Author and article information

            Affiliations
            [a ]School of Sociology and Social Policy, University of Leeds, England, UK
            [b ]School of Molecular, Genetic and Population Health Sciences, Centre for Population Health Sciences and Centre for Research on Families and Relationships, University of Edinburgh, Scotland, UK
            Author notes
            Journal
            101696354
            45918
            Law Innov Technol
            Law Innov Technol
            Law, innovation and technology
            1757-9961
            1757-997X
            11 December 2016
            2 February 2016
            2015
            16 December 2016
            : 7
            : 2
            : 187-205
            5139616
            10.1080/17579961.2015.1106103
            EMS70486

            This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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            work, participation, patients, genomics, cancer

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