Openness in Big Data and Data Repositories

Vicki Xafis,Markus K Labude

doi:10.1007/s41649-019-00097-z

Abstract

There is a growing expectation, or even requirement, for researchers to deposit a variety of research data in data repositories as a condition of funding or publication. This expectation recognizes the enormous benefits of data collected and created for research purposes being made available for secondary uses, as open science gains increasing support. This is particularly so in the context of big data, especially where health data is involved. There are, however, also challenges relating to the collection, storage, and re-use of research data. This paper gives a brief overview of the landscape of data sharing via data repositories and discusses some of the key ethical issues raised by the sharing of health-related research data, including expectations of privacy and confidentiality, the transparency of repository governance structures, access restrictions, as well as data ownership and the fair attribution of credit. To consider these issues and the values that are pertinent, the paper applies the deliberative balancing approach articulated in the Ethics Framework for Big Data in Health and Research (Xafis et al. 2019) to the domain of Openness in Big Data and Data Repositories. Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end.

Highlights

There is a growing expectation, or even requirement, for researchers to deposit a variety of research data in data repositories as a condition of funding or publication
This paper examines some of the ethical considerations that arise with the sharing of data through online data repositories in health and biomedical research
Examples of security mechanisms include, but are not limited to, the following: various levels of control may be imposed by the repository developer and custodian often through formal data sharing agreements with explicit researcher and institutional obligations articulated, including a mandate not to attempt to re-identify participant data; data may be shared over secure platforms and may not be downloadable; there are sometimes requirements for members of the data repository to collaborate on projects; with some data, there are audit trails to provide greater accountability and protections

Summary

Background

“Openness” in scientific research relates to the sharing, in a usable way, of scholarly publications and data resulting from scholarly research There is a general ambition in the scientific community to strive for a model of Open Data sharing, ethical considerations sometimes call for access restrictions where human subject data is concerned, especially in the health and biomedical sciences (Merrett et al 2018; Boulton et al 2012). Examples of security mechanisms include, but are not limited to, the following: various levels of control may be imposed by the repository developer and custodian often through formal data sharing agreements with explicit researcher and institutional obligations articulated, including a mandate not to attempt to re-identify participant data; data may be shared over secure platforms and may not be downloadable; there are sometimes requirements for members of the data repository to collaborate on projects; with some data, there are audit trails to provide greater accountability and protections

Key Issues

Identify the relevant values and potential conflicts among them

Identify actions that could be taken and the values underlying these

Communicate the action to be taken to all relevant stakeholders

Findings

Conclusion