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

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.

[1]  James M. Orten,et al.  Trials of War Criminals Before the Nuremberg Military Tribunals , 1950 .

[2]  D. Wellman,et al.  Field work and the protection of human subjects. , 1979, The American sociologist.

[3]  Mark S. Frankel,et al.  Professional codes: Why, how, and with what impact? , 1989 .

[4]  G. Annas,et al.  The changing landscape of human experimentation: Nuremberg, Helsinki, and beyond. , 1992, Health matrix.

[5]  Robert Kevin Grigsby,et al.  Federal Policy for the Protection of Human Subjects , 1993, Research on social work practice.

[6]  M. Kaptein,et al.  Twelve Gordian Knots When Developing an Organizational Code of Ethics , 1998 .

[7]  Christopher Shea Don't Talk to the Humans. , 2000 .

[8]  Bruce R. Gaumnitz,et al.  Contents of Codes of Ethics of Professional Business Organizations in the United States , 2002 .

[9]  J. E. Reardon Race to the Finish: Identity and Governance in an Age of Genomics , 2004 .

[10]  J. Walther Research ethics in Internet-enabled research: Human subjects issues and methodological myopia , 2002, Ethics and Information Technology.

[11]  S. Jasanoff States of Knowledge: The Co-production of Science and the Social Order , 2004 .

[12]  Christiane,et al.  World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. , 2004, Journal international de bioethique = International journal of bioethics.

[13]  Elizabeth H. Bassett,et al.  Ethics of Internet research: Contesting the human subjects research model , 2002, Ethics and Information Technology.

[14]  Sarita Albagli,et al.  Memory Practices in the Sciences , 2008 .

[15]  P. Pronovost,et al.  An intervention to decrease catheter-related bloodstream infections in the ICU. , 2006, The New England journal of medicine.

[16]  David Bawden,et al.  Memory Practices in the Sciences , 2007 .

[17]  Lawrence O. Gostin,et al.  Code of Federal Regulations Title 45: Public Welfare Part 46: Protection of Human Subjects , 2007 .

[18]  Robert J Levine,et al.  The dysregulation of human subjects research. , 2007, JAMA.

[19]  Heidi Ledford Human-subjects research: Trial and error , 2007, Nature.

[20]  P. Pronovost,et al.  Controversy and quality improvement: lingering questions about ethics, oversight, and patient safety research. , 2008, Joint Commission journal on quality and patient safety.

[21]  Helen Nissenbaum,et al.  Privacy in Context - Technology, Policy, and the Integrity of Social Life , 2009 .

[22]  Mitch Librett,et al.  Apples and oranges: ethnography and the IRB , 2010 .

[23]  Katherine L Kahn,et al.  Burdens on research imposed by institutional review boards: the state of the evidence and its implications for regulatory reform. , 2011, The Milbank quarterly.

[24]  C. Dwork A firm foundation for private data analysis , 2011, Commun. ACM.

[25]  H. Nissenbaum A Contextual Approach to Privacy Online , 2011, Daedalus.

[26]  Viewpoint: Why our conceptions of research and practice may not serve the best interest of patients and subjects , 2011, Journal of internal medicine.

[27]  R. Ghooi The Nuremberg Code–A critique , 2011, Perspectives in clinical research.

[28]  Arnulf Zweig,et al.  De Minimis Risk: A Proposal for a New Category of Research Risk , 2011, The American journal of bioethics : AJOB.

[29]  C. Grady,et al.  A Systematic Review of the Empirical Literature Evaluating IRBs: What We Know and What We Still Need to Learn , 2011, Journal of empirical research on human research ethics : JERHRE.

[30]  Fabian Neuhaus,et al.  AGILE ETHICS FOR MASSIFIED RESEARCH AND VISUALIZATION , 2012 .

[31]  D. Boyd,et al.  CRITICAL QUESTIONS FOR BIG DATA , 2012 .

[32]  Peter J Pronovost,et al.  Variation in Local Institutional Review Board Evaluations of a Multicenter Patient Safety Study , 2012, Journal for healthcare quality : official publication of the National Association for Healthcare Quality.

[33]  T. Beauchamp,et al.  The historical foundations of the research-practice distinction in bioethics , 2012, Theoretical medicine and bioethics.

[34]  Keith W. Miller,et al.  Big Data: New Opportunities and New Challenges [Guest editors' introduction] , 2013, Computer.

[35]  John P A Ioannidis,et al.  Informed Consent, Big Data, and the Oxymoron of Research That Is Not Research , 2013, The American journal of bioethics : AJOB.

[36]  Charis Thompson,et al.  Good Science: The Ethical Choreography of Stem Cell Research , 2013 .

[37]  Viktor Mayer-Schnberger,et al.  Big Data: A Revolution That Will Transform How We Live, Work, and Think , 2013 .

[38]  Deirdre K. Mulligan,et al.  It's Not Privacy, and It's Not Fair , 2013 .

[39]  K. Crawford,et al.  Big Data and Due Process: Toward a Framework to Redress Predictive Privacy Harms , 2013 .

[40]  Ryan Calo,et al.  Consumer Subject Review Boards: A Thought Experiment , 2013 .

[41]  T. Graepel,et al.  Private traits and attributes are predictable from digital records of human behavior , 2013, Proceedings of the National Academy of Sciences.

[42]  W. A. Danyllo,et al.  Identifying Relevant Users and Groups in the Context of Credit Analysis Based on Data from Twitter , 2013, 2013 International Conference on Cloud and Green Computing.

[43]  Michelle N. Meyer Misjudgements will drive social trials underground , 2014, Nature.

[44]  A. Zwitter Big Data ethics , 2014, Big Data Soc..

[45]  The Test We Can"”and Should"”Run on Facebook , 2014 .

[46]  Cognitive Board on Behavioral Proposed Revisions to the Common Rule for the Protection of Human Subjects in the Behavioral and Social Sciences , 2014 .

[47]  Sandra Payette,et al.  The policy knot: re-integrating policy, practice and design in cscw studies of social computing , 2014, CSCW.

[48]  Jeffrey T. Hancock,et al.  Experimental evidence of massive-scale emotional contagion through social networks , 2014, Proceedings of the National Academy of Sciences.

[49]  James Mussell Raw Data is an Oxymoron , 2014 .

[50]  R. Kitchin,et al.  Big Data, new epistemologies and paradigm shifts , 2014, Big Data Soc..

[51]  Helen Nissenbaum,et al.  Big data's end run around procedural privacy protections , 2014, Commun. ACM.

[52]  Mark Andrejevic,et al.  Big Data, Big Questions| The Big Data Divide , 2014 .

[53]  Omer Tene,et al.  Beyond the Common Rule: Ethical Structures for Data Research in Non-Academic Settings , 2015 .

[54]  Lois Ann Scheidt,et al.  It’s Complicated: The Social Lives of Networked Teens , 2015, New Media Soc..

[55]  James Grimmelmann,et al.  The Law and Ethics of Experiments on Social Media Users , 2015 .

[56]  D. Richardson,et al.  Embedding Privacy and Ethical Values in Big Data Technology , 2015 .

[57]  Eric Gossett,et al.  Big Data: A Revolution That Will Transform How We Live, Work, and Think , 2015 .

[58]  M. Meyer,et al.  Two Cheers for Corporate Experimentation: The A/B Illusion and the Virtues of Data-Driven Innovation , 2015 .

[59]  Andrew J. Russell,et al.  Using Ethical Reasoning to Amplify the Reach and Resonance of Professional Codes of Conduct in Training Big Data Scientists , 2014, Sci. Eng. Ethics.

[60]  Katie Shilton,et al.  "We Aren't All Going to Be on the Same Page about Ethics": Ethical Practices and Challenges in Research on Digital and Social Media , 2016, 2016 49th Hawaii International Conference on System Sciences (HICSS).

[61]  B. Knoppers,et al.  Ethics review for international data-intensive research , 2016, Science.

[62]  Michelle V. Hauge,et al.  Tagging Banksy: using geographic profiling to investigate a modern art mystery , 2016 .