The ethics of big data: Focus Feature

Written by Jason Papin, Deputy-Editor-in-Chief for PLOS Computational Biology

There has been a recent explosion of big data due to the development in mobile technologies which quickly and easily connect to the Internet. This “big data” onslaught (a term I use cautiously, given its ill-defined and “buzzy” use) has catalyzed the opening of numerous research avenues. With these exciting new research opportunities comes the much needed consideration of ethical challenges; many of which would not have been predicted a short time ago. These ethical challenges that accompany the use of “big data” in biology and medicine are the subject of a new Focus Feature in PLOS Computational Biology.

The editors of PLOS Computational Biology have developed the Focus Feature concept as a vehicle to group together papers of interest, either newly published or pulled from the journal archives, to provide a forum for discussion of cutting-edge topics in the field. Phil Bourne (Founding-Editor-in-Chief of PLOS Computational Biology and serves as the Associate Director for Data Science at the National Institutes of Health of the United States) writes an Editorial to accompany this initial Focus Feature and as a companion to a new paper by Effy Vayena  and colleagues.

The paper by Vayena et al. published on 9^th February, 2015 discusses the development of “digital epidemiology” and how big data from social media are enabling the development of early disease detection strategies as well as other applications. The recent massive outbreak of Ebola, with reports of early detection from social media data analysis, is an excellent example of the power of the potential in the field. With these developments come unique ethical questions that the community needs to tackle. This paper by Vayena et al. delineates many of the ethical considerations and provides ideas on frameworks to address these concerns.

Three other papers published in PLOS Computational Biology are also featured in this Focus Feature, highlighting related considerations. Marcel Salathé and colleagues write about the genesis of “digital epidemiology” which has emerged as a field with the advent of mobile technologies and social networks. Thus they have provided an opportunity to address outstanding questions on disease and health dynamics in ways that have been impossible previously.

Openness of data and methods has been critical for the development of computational biology, yet there are privacy concerns emerging with personal genomics data that need to be considered. Dov Greenbaum and colleagues discuss these issues for the field and review technological and legal developments that may mitigate particular aspects of these concerns.

Furthermore, Yann Joly and colleagues share experiences and lessons from the International Cancer Genome Consortium on balancing concerns regarding data access and privacy, including a discussion of a tiered access system as a possible strategy to appropriately mitigate issues that arise.

The PLOS Computational Biology editors hope that Focus Features will perform a valuable role in the community, serving as a nexus of work of central concern in the field.  The ethics of big data will be an increasingly important consideration and these papers will bring these issues to the forefront of community discussion.

The Ethics of Big Data Focus Feature consists of the following papers:

Ethical Challenges of Big Data in Public Health Vayena et al.

Confronting the Ethical Challenges of Big Data in Public Health Philip E. Bourne

Digital Epidemiology Salathe et al.

Genomics and Privacy: Implications of the New Reality of Closed Data for the Field Greenbaum et al.

Data Sharing in the Post-Genomic World: The Experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO) Joly et al.