Timotijevic Lada, Carr Indira, De La Cueva Javier, Eftimov Tome, Hodgkins Charo E, Koroušić Seljak Barbara, Mikkelsen Bent E, Selnes Trond, Van't Veer Pieter, Zimmermann Karin
School of Psychology, University of Surrey, Guildford, United Kingdom.
School of Law, University of Surrey, Guildford, United Kingdom.
Front Nutr. 2022 Mar 23;8:795802. doi: 10.3389/fnut.2021.795802. eCollection 2021.
The focus of the current paper is on a design of responsible governance of food consumer science e-infrastructure using the case study Determinants and Intake Data Platform (DI Data Platform). One of the key challenges for implementation of the DI Data Platform is how to develop responsible governance that observes the ethical and legal frameworks of big data research and innovation, whilst simultaneously capitalizing on huge opportunities offered by open science and the use of big data in food consumer science research. We address this challenge with a specific focus on four key governance considerations: data type and technology; data ownership and intellectual property; data privacy and security; and institutional arrangements for ethical governance. The paper concludes with a set of responsible research governance principles that can inform the implementation of DI Data Platform, and in particular: consider both individual and group privacy; monitor the power and control (e.g., between the scientist and the research participant) in the process of research; question the veracity of new knowledge based on big data analytics; understand the diverse interpretations of scientists' responsibility across different jurisdictions.
本文的重点是利用案例研究“决定因素与摄入量数据平台”（DI数据平台），对食品消费者科学电子基础设施的负责任治理进行设计。DI数据平台实施的关键挑战之一是如何制定负责任的治理措施，既要遵守大数据研究与创新的伦理和法律框架，同时又要利用开放科学以及在食品消费者科学研究中使用大数据所带来的巨大机遇。我们针对四个关键治理考量因素来应对这一挑战：数据类型与技术；数据所有权与知识产权；数据隐私与安全；以及伦理治理的制度安排。本文最后提出了一套负责任的研究治理原则，可为DI数据平台的实施提供指导，特别是：兼顾个人和群体隐私；在研究过程中监测权力与控制（例如科学家与研究参与者之间的权力与控制）；对基于大数据分析的新知识的真实性提出质疑；了解不同司法管辖区对科学家责任的不同解读。
