Working Through Ethics Review of Big Data Research Projects: An Investigation into the Experiences of Swiss and American Researchers

The employment of Big Data as an increasingly used research method has introduced novel challenges to ethical research practices and to ethics committees (ECs) globally. The aim of this study is to explore the experiences of scholars with ECs in the ethical evaluation of Big Data projects. Thirty-five interviews were performed with Swiss and American researchers involved in Big Data research in psychology and sociology. The interviews were analyzed using thematic coding. Our respondents reported lack of support from ECs, absence of appropriate expertise among members of the boards, and lack of harmonized evaluation criteria between committees. To implement ECs practices we argue for updating the expertise of board members and the institution of a consultancy model between researchers and ECs.

[1]  B. Elger,et al.  What is your definition of Big Data? Researchers’ understanding of the phenomenon of the decade , 2020, PloS one.

[2]  G. Samuel,et al.  Reasoning “Uncharted Territory”: Notions of Expertise Within Ethics Review Panels Assessing Research Use of Social Media , 2019, Journal of empirical research on human research ethics : JERHRE.

[3]  Markus K. Labude,et al.  An Ethics Framework for Big Data in Health and Research , 2019, Asian Bioethics Review.

[4]  N. Raymond Safeguards for human studies can’t cope with big data , 2019, Nature.

[5]  Henning Hermjakob,et al.  A data citation roadmap for scholarly data repositories , 2016, Scientific Data.

[6]  Bernice Simone Elger,et al.  Big Data and discrimination: perils, promises and solutions. A systematic review , 2019, Journal of Big Data.

[7]  E. Dove,et al.  Charting Regulatory Stewardship in Health Research: Making the Invisible Visible , 2018, Cambridge quarterly of healthcare ethics : CQ : the international journal of healthcare ethics committees.

[8]  E. Dove,et al.  Expert perspectives on ethics review of international data-intensive research: Working towards mutual recognition , 2018 .

[9]  K. Crawford,et al.  Where are human subjects in Big Data research? The emerging ethics divide , 2016, Big Data Soc..

[10]  Luciano Floridi,et al.  The Ethics of Big Data: Current and Foreseeable Issues in Biomedical Contexts , 2015, Science and Engineering Ethics.

[11]  Bonnie Kaplan,et al.  How Should Health Data Be Used? , 2016, Cambridge Quarterly of Healthcare Ethics.

[12]  Katie Shilton,et al.  Beyond the Belmont Principles: Ethical Challenges, Practices, and Beliefs in the Online Data Research Community , 2016, CSCW.

[13]  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).

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

[15]  David Shaw Facebook’s flawed emotion experiment: Antisocial research on social network users , 2016 .

[16]  Sinclair Ewing-Nelson,et al.  Look Out for ‘La Grippe’: Using Digital Humanities Tools to Interpret Information Dissemination during the Russian Flu, 1889–90 , 2016, Medical history.

[17]  V. Xafis The acceptability of conducting data linkage research without obtaining consent: lay people’s views and justifications , 2015, BMC medical ethics.

[18]  Carmen C. Y. Poon,et al.  Big Data for Health , 2015, IEEE Journal of Biomedical and Health Informatics.

[19]  Anne Bowser,et al.  Supporting Ethical Web Research: A New Research Ethics Review , 2015, WWW.

[20]  Marcel Salathé,et al.  Ethical Challenges of Big Data in Public Health , 2015, PLoS Comput. Biol..

[21]  Justin Reich,et al.  Privacy, anonymity, and big data in the social sciences , 2014, Commun. ACM.

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

[23]  Joseph Graskemper Viewpoints regarding dental insurance. , 2014, The Journal of the American College of Dentists.

[24]  Amy Bruckman,et al.  Research Ethics and HCI , 2014, Ways of Knowing in HCI.

[25]  R. Kitchin,et al.  Big data and human geography , 2013 .

[26]  Nicola F. Johnson,et al.  Silences of ethical practice: dilemmas for researchers using social media , 2013 .

[27]  John A. Bates,et al.  Conducting Psychology Student Research Via the Mechanical Turk Crowdsourcing Service , 2013 .

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

[29]  D. Dittrich,et al.  Computer Science Security Research and Human Subjects: Emerging Considerations for Research Ethics Boards , 2011, Journal of Empirical Research on Human Research Ethics.

[30]  Zachary M. Schrag The Case against Ethics Review in the Social Sciences , 2011 .

[31]  Carol A. Heimer,et al.  Bureaucratic Ethics: IRBs and the Legal Regulation of Human Subjects Research , 2010 .

[32]  Rolf H. Weber,et al.  Internet of Things - New security and privacy challenges , 2010, Comput. Law Secur. Rev..

[33]  C. Lynch Big data: How do your data grow? , 2008, Nature.

[34]  W. Greenough,et al.  Mission Creep in the IRB World , 2006, Science.

[35]  J. Lowery,et al.  Impact of institutional review board practice variation on observational health services research. , 2006, Health services research.

[36]  V. Braun,et al.  Using thematic analysis in psychology , 2006 .

[37]  Blaine F. Peden,et al.  Virtual Research Ethics: A Content Analysis of Surveys and Experiments Online , 2004 .