当前位置: X-MOL 学术Science and Engineering Ethics › 论文详情
Our official English website, www.x-mol.net, welcomes your feedback! (Note: you will need to create a separate account there.)
Ethical Issues in Consent for the Reuse of Data in Health Data Platforms
Science and Engineering Ethics ( IF 3.7 ) Pub Date : 2021-02-04 , DOI: 10.1007/s11948-021-00282-0
Alex McKeown 1 , Miranda Mourby 2 , Paul Harrison 3 , Sophie Walker 4 , Mark Sheehan 5 , Ilina Singh 6
Affiliation  

Data platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine approaches can be derived from their integration. If the integration of diverse datasets enables development of more accurate risk indicators, prognostic factors, or better treatments and interventions, this obviates the need for the sharing and reuse of data; and a platform-based approach is an appropriate model for facilitating this. Platform-based approaches thus require new thinking about consent. Here we defend an approach to meeting this challenge within the data platform model, grounded in: the notion of ‘reasonable expectations’ for the reuse of data; Waldron’s account of ‘integrity’ as a heuristic for managing disagreement about the ethical permissibility of the approach; and the element of the social contract that emphasises the importance of public engagement in embedding new norms of research consistent with changing technological realities. While a social contract approach may sound appealing, however, it is incoherent in the context at hand. We defend a way forward guided by that part of the social contract which requires public approval for the proposal and argue that we have moral reasons to endorse a wider presumption of data reuse. However, we show that the relationship in question is not recognisably contractual and that the social contract approach is therefore misleading in this context. We conclude stating four requirements on which the legitimacy of our proposal rests.



中文翻译:

同意在健康数据平台中重用数据的伦理问题

数据平台代表了开展健康研究的新范式。在平台模型中,数据集被集中用于远程访问和分析,因此可以从它们的集成中获得用于开发更好的分层和/或个性化医疗方法的新见解。如果不同数据集的整合能够开发更准确的风险指标、预后因素或更好的治疗和干预措施,则无需共享和重用数据;基于平台的方法是促进这一点的合适模式。因此,基于平台的方法需要对同意进行新的思考。在这里,我们捍卫了在数据平台模型中应对这一挑战的方法,其基础是: 数据重用的“合理期望”概念;Waldron 将“完整性”描述为一种启发式方法,用于管理有关该方法的道德可允许性的分歧;以及强调公众参与嵌入与不断变化的技术现实相一致的新研究规范的重要性的社会契约元素。然而,虽然社会契约方法听起来很有吸引力,但它在手头的上下文中是不连贯的。我们捍卫需要公众批准提案的社会契约部分指导的前进道路,并认为我们有道德理由支持更广泛的数据重用假设。然而,我们表明所讨论的关系不是可识别的契约关系,因此社会契约方法在这种情况下具有误导性。我们最后陈述了我们提案的合法性所依据的四项要求。

更新日期:2021-02-04
down
wechat
bug