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Diversity via datafication? Digital patient records and citizenship for sexuality and gender diverse people
BioSocieties ( IF 1.3 ) Pub Date : 2022-04-05 , DOI: 10.1057/s41292-022-00277-5
Mark D. M. Davis 1 , Allegra Schermuly 1 , Anthony K. J. Smith 2 , Christy Newman 2
Affiliation  

In 2018, the Australian Government adopted an ‘opt-out’ strategy to increase participation in My Health Record (MHR), the national digital patient record system. Opt out was rationalised through discourse on the universal right to health. Media controversy ensued due to privacy fears, security and commercial exploitation of patient information. LGBT community organisations warned that people with complex health needs should consider their privacy and legal situation when deciding whether or not to opt out of MHR. With reference to the health needs of sexuality and gender diverse people, we examine MHR’s rights universalism, possessive individualism, and state-based rationalisation of health governance. MHR hails all but no-one in particular, erasing diversity and straightwashing data medicine. It is a technological solution to state-based imperatives for health governance, an emphasis that does not serve minority communities or address health needs that attract stigma and prejudice. We counterpose these effects with citizenship framings seated in critical approaches to data assemblages and sexuality and gender diversity. We suggest ways in which data medicine, of which MHR is but one example, can be made more relevant and effective for individuals and communities whose healthcare is poorly served by mainstream health systems.



中文翻译:

通过数据化实现多样性?性取向和性别多样化人群的数字病历和公民身份

2018 年,澳大利亚政府采取了“选择退出”策略,以增加对国家数字患者记录系统“我的健康记录”(MHR) 的参与。通过对普遍健康权的讨论,选择退出变得合理化。由于隐私担忧、安全性和对患者信息的商业利用,媒体争议随之而来。 LGBT 社区组织警告说,有复杂健康需求的人在决定是否选择退出 MHR 时应考虑自己的隐私和法律状况。参考性取向和性别多样化人群的健康需求,我们考察了MHR的权利普遍主义、占有个人主义和基于国家的健康治理合理化。 MHR 向所有人表示欢迎,但没有特别指出一个人,因为他们消除了多样性并直接清洗了数据医学。它是针对基于国家的健康治理要求的技术解决方案,其重点不服务于少数群体社区或解决引起耻辱和偏见的健康需求。我们通过数据组合、性和性别多样性的关键方法中的公民框架来对抗这些影响。我们提出了一些方法,可以使数据医学(MHR 只是其中之一)对于主流卫生系统医疗保健服务较差的个人和社区更加相关和有效。

更新日期:2022-04-05
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