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• Response to "In Defence of Governance: Ethics Review and Social Research"
  Gabby Samuel, Gemma Derrick
  Published on: 25 September 2018

• Published on: 25 September 2018

  Response to "In Defence of Governance: Ethics Review and Social Research"

  • Gabby Samuel, Researcher King's Collge London
  • Other Contributors:
    • Gemma Derrick, Lecturer in Higher Education

  Recently we conducted a study that identified an “ethics ecosystem” that, as a form of research governance, ensures that common ethical principles are operationalised by a number of actors within this ecosystem. This ethics ecosystem includes researchers, research ethics committee members, research institutions, publishing houses and Editors, and external Associations [1, 2].

  In their paper ‘In defence of governance: ethics review and social research’, Sheehan et al [3] attempt to find a strong ethical answer for the need for such levels of ethical governance at the ethical review level for the social sciences. In doing this, the authors respond to a number of hypothetical claims against the need for such a review governance system. They then create their case that society has a stake in social research because of its link to enquiry, and in turn, human flourishing. They explain that because individual members of society will reasonably disagree about this ‘stake’, i.e., what specific research enquiry should proceed through ethical review to further human flourishing, this needs to be settled via a ‘fair process’ governance (i.e., a committee style) model.

  While this paper is certainly a comprehensive and interesting analysis highlighting many of the discussions in this area, the authors fail to sufficiently link their final argument to ‘enquiry’.

  We believe we can provide a better defense for an ethical review framework. This can be achieved by...

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  Recently we conducted a study that identified an “ethics ecosystem” that, as a form of research governance, ensures that common ethical principles are operationalised by a number of actors within this ecosystem. This ethics ecosystem includes researchers, research ethics committee members, research institutions, publishing houses and Editors, and external Associations [1, 2].

  In their paper ‘In defence of governance: ethics review and social research’, Sheehan et al [3] attempt to find a strong ethical answer for the need for such levels of ethical governance at the ethical review level for the social sciences. In doing this, the authors respond to a number of hypothetical claims against the need for such a review governance system. They then create their case that society has a stake in social research because of its link to enquiry, and in turn, human flourishing. They explain that because individual members of society will reasonably disagree about this ‘stake’, i.e., what specific research enquiry should proceed through ethical review to further human flourishing, this needs to be settled via a ‘fair process’ governance (i.e., a committee style) model.

  While this paper is certainly a comprehensive and interesting analysis highlighting many of the discussions in this area, the authors fail to sufficiently link their final argument to ‘enquiry’.

  We believe we can provide a better defense for an ethical review framework. This can be achieved by asking first and foremost “How can we conduct ethical social science research?” rather than, as Sheehan et al ask, How can we defend ethics review? By re-framing this initial question, the justification for a level of research ethics governance becomes clearer.

  At present, our “ethics ecosystem” ensures that conducting ethical research and behaving ethically is reinforced through a governance network of interconnected actors from the academic system. The Ethics Ecosystem comprises individuals (researchers), organisations (research institutions) and external bodies (publishing houses, funding bodies, professional associations) all working together and playing a role in the promotion, evaluation and enforcement of a shared understanding of ethically responsible research behavior [1]. This ensures that research is conducted responsibly in a way that is valued by the academy, minimises risk to participants, and guards against academic misconduct.

  When working well, it is hard to see the importance that each actor and each level of the ecosystem has in the maintenance of shared understandings of ethical behaviour. Only when this ecosystem is compromised can we see the need for a higher form of research ethics governance.

  Such is the case for social media research.

  Social media sites are increasingly being seen as rich sources of health data for scholars- as avenues for research project recruitment; as intervention platforms for specific health conditions; to explore social support and health; and as a source of publicly available data. Data-mining techniques used to access public health data have, for example, been drawn upon to improve infectious disease surveillance; to understand disease patterns; and to explore health behaviours[4]. A number of ethical concerns have emerged in relation to the use of such data, and the ongoing and complex nature of social media research has been suggested to be potentially challenging for researchers and ethics committees. Concerns relate to whether to classify social media research as human subjects’ research or text-based analysis; what constitutes public and private spaces; and vulnerability, potential harm, intrusiveness, and confidentiality [5-12].

  We explored how the ethics ecosystem was functioning with relation to this new mode of ethically complex research. We spoke to actors at many levels of the ecosystem including researchers, research ethics committee members, universities, publishing houses, and journal Editors. We identified a lack of community consistency, which fosters a culture in which decisions about the ethical use of SM data is primarily made by a reliance on individual researchers implementing a form of “personal ethics”; rather than by a shared norm around the use of SM data by actors within an overarching ethics ecosystem. Such a ‘personal ethics’ if left unchecked, can be dangerous in terms of unethical research falling between the cracks in terms of research governance.

  At the researcher level of the ethics ecosystem, researchers placed emphasis on the subjective, individual nature of ethics when justifying their research practices:

  Interviewer: Are there any guidelines in particular that you follow in your own research?
  Researcher : It’s my guidelines. Everybody has their own definition of ethics….

  They spoke about working around the non-obligatory ‘vague’ guidelines to justify their research;

  They are [guidelines] slightly contradictory in places and you can argue around them...so there is some issues around integrity that don’t necessarily hold true and you can argue either way for some of the issues around that

  With such a personal approach to ethics, researchers’ ability to justify their ethical choices to both other researchers, as well as, where necessary, to ethical review boards became a key priority;

  There is a sense of you got to develop the sense of what's right here, be the expert in that and then put that across and you know, make your case

  At the researcher ethics committee level of the ethics ecosystem, because little social media research was submitted for ethical review (researchers used ‘personal ethics’ to often justify this decision), committee members had little experience or shared understanding of how to review this research. Within this framework of ethical decision-making, focus was placed on researchers’ justifications of their research approach

  sometimes make different decisions even for projects that look pretty similar. It’s how they build up their case doing that particular project

  Similar ethical decision-making, focused on a researcher’s justification of their personal ethics, was also evident at the Editor level of the ecosystem.

  This personal ethics is not necessarily problematic per se but if we remove the stability of shared understanding within the ethics ecosystem, researchers are left to justify which research is ethical or not by themselves and not within themselves. This leads to the disintegration of the multi-member ethics ecosystem, its governance role and ethic pluralism applied at all levels. The risk of this, we argue, provides a stronger justification for research ethics governance than the ones considered by Sheehan et al.

  Ethics Approval: Ethics approval for this research was granted by Lancaster University

  References

  1. Samuel G, Derrick G. Social media research, ‘personal ethics’, and the Ethics Ecosystem. New Social Media, New Social Science Blog 2017.
  2. Social media approaches to health research: an empirical analysis of decision-making within the UK ethical landscape. Social Media and Health: Meeting the Ethical Challenges; 2017 4th October; Wellcome Trust.
  3. Sheehan M, Dunn M, Sahan K In defence of governance: ethics review and social research Journal of Medical Ethics Published Online First: 10 October 2017. doi: 10.1136/medethics-2017-104443
  4. Vayena E, Mastroianni A, Kahn J. Ethical Issues in Health Research With Novel Online Sources. American Journal of Public Health 2012;102(12):2225-30.
  5. McKee HA, Porter JE. The ethics of internet research: a rhetorical, case-based process. New York: Peter Lang Publishing, 2009.
  6. Zimmer M. ‘‘But the data is already public’’: on the ethics of research in Facebook. Ethics Inf Technol 2010;12:313-25.
  7. Snee H. Making Ethical Decisions in an Online context: Reflections on using blogs to explore narratives of experience. Methodological innovations online 2013;8(2):52-67.
  8. Lomborg S. Personal internet archives and ethics. Research Ethics 2013;9(1):20-31.
  9. Swirsky E, Hoop J, Labott S. Using Social Media in Research: New Ethics for a New
  Meme? American Journal of Bioethics 2014;14(10):60-61.
  10. Convery I, Cox D. A review of research ethics in internet-based research. Practitioner Research in Higher Education 2012;6(1):50-57.
  11. Markham A, Buchanan E. Ethical Decision-Making and Internet Research: Recommendations from the AoIR Ethics Working Committee, 2012.
  12. Henderson M, Johnson NF, Auld G. Silences of ethical practice: dilemmas for researchers using social media. Educational Research and Evaluation: An International Journal on Theory and Practice 2013;19(6):546-60.

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  Conflict of Interest:
  None declared.

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