The social licence for research: why care.data ran into trouble.
The social licence for research: why care.data ran into trouble.
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研究的社会许可证：为什么Care.Data遇到了麻烦。
DOI：
10.1136/medethics-2014-102374
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发表时间：
2015-05
影响因子：
4.1
通讯作者：
Dixon-Woods M
中科院分区：
文献类型：
--
作者：
Carter P;Laurie GT;Dixon-Woods M
在这篇文章中，我们借鉴社会许可证的概念来解释公众对care.data的关注，这是一个最近的英国倡议，旨在从初级保健医疗记录中提取数据，用于委托和其他目的，包括研究。社会许可证的概念描述了社会对某些活动的期望如何可能超出遵守正式法规的要求;那些不符合社会许可证条件的人（即使正式遵守）可能会受到持续的挑战和质疑。以前的工作表明，人们与具体研究的合作取决于他们的看法，他们的参与是自愿的，是由互惠，非剥削和公益服务的价值观。如果这些条件得不到满足，就可能出现对社会研究许可证的威胁。我们建议，care.data未能充分确保社会许可证，因为：（一）在提供的信任权证的缺陷care.data，（二）在传统的角色，期望和全科医生的职责隐含断裂，和（三）care.data作为公共产品的地位的不确定性。社会许可证的概念可能有助于解释care.data的具体情况，也有助于为政策制定者强化更普遍的教训，即法律的权威不一定拥有社会合法性。
In this article we draw on the concept of a social licence to explain public concern at the introduction of care.data, a recent English initiative designed to extract data from primary care medical records for commissioning and other purposes, including research. The concept of a social licence describes how the expectations of society regarding some activities may go beyond compliance with the requirements of formal regulation; those who do not fulfil the conditions for the social licence (even if formally compliant) may experience ongoing challenge and contestation. Previous work suggests that people's cooperation with specific research studies depends on their perceptions that their participation is voluntary and is governed by values of reciprocity, non-exploitation and service of the public good. When these conditions are not seen to obtain, threats to the social licence for research may emerge. We propose that care.data failed to adequately secure a social licence because of: (i) defects in the warrants of trust provided for care.data, (ii) the implied rupture in the traditional role, expectations and duties of general practitioners, and (iii) uncertainty about the status of care.data as a public good. The concept of a social licence may be useful in explaining the specifics of care.data, and also in reinforcing the more general lesson for policy-makers that legal authority does not necessarily command social legitimacy.
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影响因子：
2.9
作者：
Armstrong, Natalie;Dixon-Woods, Mary;Tarrant, Carolyn
通讯作者：
Tarrant, Carolyn
影响因子：
1.6
作者：
Dixon-Woods, Mary;Wilson, Duncan;Pritchard-Jones, Kathy
通讯作者：
Pritchard-Jones, Kathy
影响因子：
2.7
作者：
Dixon-Woods, Mary;Tarrant, Carolyn;Kenyon, Sara
通讯作者：
Kenyon, Sara
影响因子：
5.4
作者：
Garrety, Karin;McLoughlin, Ian;Martin, Mike
通讯作者：
Martin, Mike
影响因子：
5.4
作者：
Dixon-Woods, Mary;Tarrant, Carolyn
通讯作者：
Tarrant, Carolyn