Where are human subjects in Big Data research? The emerging ethics divide

Abstract

There are growing discontinuities between the research practices of data science and established tools of research ethics regulation. Some of the core commitments of existing research ethics regulations, such as the distinction between research and practice, cannot be cleanly exported from biomedical research to data science research. Such discontinuities have led some data science practitioners and researchers to move toward rejecting ethics regulations outright. These shifts occur at the same time as a proposal for major revisions to the Common Rule—the primary regulation governing human-subjects research in the USA—is under consideration for the first time in decades. We contextualize these revisions in long-running complaints about regulation of social science research and argue data science should be understood as continuous with social sciences in this regard. The proposed regulations are more flexible and scalable to the methods of non-biomedical research, yet problematically largely exclude data science methods from human-subjects regulation, particularly uses of public datasets. The ethical frameworks for Big Data research are highly contested and in flux, and the potential harms of data science research are unpredictable. We examine several contentious cases of research harms in data science, including the 2014 Facebook emotional contagion study and the 2016 use of geographical data techniques to identify the pseudonymous artist Banksy. To address disputes about application of human-subjects research ethics in data science, critical data studies should offer a historically nuanced theory of “data subjectivity” responsive to the epistemic methods, harms and benefits of data science and commerce.

Chapter 4: Using Twitter as a Data Source: An Overview of Ethical, Legal, and Methodological Challenges

“…This case study is distinct from the previous three case studies in that the researchers are not retrieving data generated by human participants. This is one of the major ethical debates in social media research i.e., identifying what counts as a human subject (Metcalf & Crawford, 2016).…”

Big Data-Driven Health Surveillance

“…CDS researchers analyse and examine the implications, biases, risks and inequalities, as well as the counter-potential, of such (big) data. In this context, the need for qualitative, empirical approaches to data subjects' daily lives and data practices (Lupton 2016;Metcalf and Crawford 2016) has been increasingly stressed. Such critical work is evolving in parallel with the spreading ideology of datafication's unquestioned superiority: a tendency which is also noticeable in scientific research.…”

Big Data in Organizations and the Role of Human Resource Management

“…There are fragmented discussions about the subjective influence of big data (e.g. Boyd & Crawford 2012, Dalton & Thatcher 2014, Kitchin 2014a, Scholz 2015a, Metcalf & Crawford 2016). …”