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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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          Dynamic consent: a patient interface for twenty-first century research networks

          Biomedical research is being transformed through the application of information technologies that allow ever greater amounts of data to be shared on an unprecedented scale. However, the methods for involving participants have not kept pace with changes in research capability. In an era when information is shared digitally at the global level, mechanisms of informed consent remain static, paper-based and organised around national boundaries and legal frameworks. Dynamic consent (DC) is both a specific project and a wider concept that offers a new approach to consent; one designed to meet the needs of the twenty-first century research landscape. At the heart of DC is a personalised, digital communication interface that connects researchers and participants, placing participants at the heart of decision making. The interface facilitates two-way communication to stimulate a more engaged, informed and scientifically literate participant population where individuals can tailor and manage their own consent preferences. The technical architecture of DC includes components that can securely encrypt sensitive data and allow participant consent preferences to travel with their data and samples when they are shared with third parties. In addition to improving transparency and public trust, this system benefits researchers by streamlining recruitment and enabling more efficient participant recontact. DC has mainly been developed in biobanking contexts, but it also has potential application in other domains for a variety of purposes.
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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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