Nottingham University Business School, Nottingham, UK.
Sociol Health Illn. 2019 Nov;41(8):1585-1599. doi: 10.1111/1467-9566.12969. Epub 2019 Aug 18.
We draw on findings from qualitative interviews with health data researchers, GPs and citizens who opted out from NHS England's care.data programme to explore controversies and negotiations around data sharing in the NHS. Drawing on theoretical perspectives from science and technology studies, we show that the new socio-technical, ethical and economic arrangements were resisted not only on the basis of individual autonomy and protection from exploitation, but also as a collective effort to protect NHS services and patient data. We argue that the resulting opt-outs were a call for more personal control over data use. This was not because these citizens placed their personal interests above those of society. It was because they resisted proposed arrangements by networks of stakeholders, not seen as legitimate, to control flows and benefits of NHS patient data. Approaching informed consent this way helps us to explore resistance as a collective action for influencing the direction of such big data programmes towards the preservation of public access to healthcare as well as the distribution of ethical decision-making between independent, trustworthy institutions and individual citizens.
我们借鉴了定性访谈的结果，访谈对象包括健康数据研究人员、全科医生和选择退出英格兰国民保健署 care.data 项目的公民，以探讨国民保健服务中数据共享的争议和协商。我们借鉴了科学技术研究的理论观点，表明新的社会技术、伦理和经济安排不仅基于个人自主权和防范剥削的需要遭到抵制，而且还遭到了保护国民保健服务和患者数据的集体努力的抵制。我们认为，由此产生的选择退出是呼吁对数据使用拥有更多的个人控制。这并不是因为这些公民将个人利益置于社会利益之上。而是因为他们抵制了利益相关者网络提出的控制 NHS 患者数据流动和利益的安排，这些安排被认为是不合法的。以这种方式处理知情同意有助于我们将抵制视为一种集体行动，以影响此类大数据计划的方向，朝着维护公众获得医疗保健的机会以及在独立、可信赖的机构和个人公民之间分配伦理决策的方向发展。
