获取癌症靶向疗法:在主流癌症慈善机构之外的自我和集体宣传。

IF 1.3 4区 医学 Q4 BIOTECHNOLOGY & APPLIED MICROBIOLOGY New Genetics and Society Pub Date : 2021-01-17 eCollection Date: 2021-01-01 DOI:10.1080/14636778.2020.1868986
Anne Kerr, Choon Key Chekar, Julia Swallow, Emily Ross, Sarah Cunningham-Burley
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引用次数: 0

摘要

随着精准肿瘤学的发展,患者及其家属通过在大型癌症慈善机构之外开展筹款和宣传活动,更多地参与到获得这些治疗的努力中来。在本文中,我们以九位倡导者的故事为基础,对他们的社交媒体帖子以及新闻、评论和筹款网站对其案例的报道进行了访谈和内容分析,探讨了英国获得治疗倡导者的团结、网络和情感工作。我们考虑了建立网络的情感和知识工作,这些网络跨越了消费主义和激进主义议程,形成了个人和集体目标,并面向公共、私营和第三部门,作为确保支持和获取的一部分。通过这些不同的实践,我们所研究的参与者培养了个人优势以及与其他患者和倡导者的团结,并以此参与到主流癌症慈善机构之外的自我和集体倡导活动中。
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Accessing targeted therapies for cancer: self and collective advocacy alongside and beyond mainstream cancer charities.

As precision oncology has evolved, patients and their families have become more involved in efforts to access these treatments via fundraising and campaigning that take place outside of the larger cancer charities. In this paper, we explore the solidarities, networks, and emotional work of the UK-based access advocates, drawing on the stories of nine advocates, which included interviews and content analyses of their social media posts and coverage of their case in news, commentary, and fundraising websites. We consider the emotional and knowledge work of building networks that spanned consumerist and activist agendas, forged individual and collective goals, and orientations toward the public, private, and third sectors as part of securing support and access. Through these various practices, the actors we have studied cultivated personal advantage and solidarities with other patients and advocates, and in so doing engaged in self and collective advocacy alongside and beyond mainstream cancer charities.

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来源期刊
New Genetics and Society
New Genetics and Society 生物-生物工程与应用微生物
CiteScore
4.30
自引率
16.70%
发文量
19
审稿时长
>12 weeks
期刊介绍: New Genetics and Society: Critical Studies of Contemporary Biosciences is a world-leading journal which: -Provides a focus for interdisciplinary and multi-disciplinary, leading-edge social science research on the new genetics and related biosciences; -Publishes theoretical and empirical contributions reflecting its multi-faceted development; -Provides an international platform for critical reflection and debate; -Is an invaluable research resource for the many related professions, including health, medicine and the law, wishing to keep abreast of fast changing developments in contemporary biosciences. New Genetics and Society publishes papers on the social aspects of the new genetics (widely defined), including gene editing, genomics, proteomics, epigenetics and systems biology; and the rapidly developing biosciences such as biomedical and reproductive therapies and technologies, xenotransplantation, stem cell research and neuroscience. Our focus is on developing a better understanding of the social, legal, ethical and policy aspects, including their local and global management and organisation.
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