I undertook a PhD late in life, after 30 years working in medical research. I had had extensive experience with ethics applications and HRECs, having endured along the way the many individual site approvals for single projects, then the relative joys of single site, multi-centre approvals; and different approval systems and requirements from every state for a single project. Later we even cracked approvals for access to PBS and Medicare data. I know about ethics, and support the merits of research ethics approval to protect participants.
My PhD project involved data collection via a national on-line survey of early career researchers employed in research institutes and universities across Australia, and some interviews. I received ethics approval on the first application, but was taken aback by the HREC’s condition that I must obtain gatekeeper approval from every institution before contacting potential participants. We have discussed this requirement before in Research Ethics Monthly (Christian et al., 2019); but it led to a great deal of work for both me and the institutions, and probably also resulted in sample bias.
I have to admit I was angry and frustrated; I felt this requirement was ethically both unnecessary and wrong but as a PhD student I did as I was told, and quietly fumed. I determined to write a paper about it, demanding change. Slowly the need to shout diminished, and, guided by my patient supervisors, we approached the discussion about this ethical barrier academically (Christian et al., 2022).
On the way, we explored why we have gatekeepers. Are they there for protection of the participants (people inside the gate) or the people who own the property (the institutions) (Singh & Wassenaar, 2016)? What happens when the site is virtual? Does the gate still apply (Hedgecoe, 2016)?
When is the gatekeeper’s presence merited? Who should they be protecting? When their charges are staff members, should gatekeepers have rights of approval/disapproval all the time, or only during working hours, or only on “the property”? (McFadyen & Rankin, 2016)
Should the gatekeepers be there at all when the population is not vulnerable – in an instance such as this, where potential participants were in a position to make their own decisions, or, indeed, for social science research at large?
We wondered if the gatekeeper sometimes expected they should provide another level of ethics review prior to approval, thus duplicating the efforts of the HREC? (Guillemin et al., 2012; Vadeboncoeur et al., 2016)
We examined how the gatekeeper, once identified, impacts the research and the researcher. Are they facilitators or do they provide a barrier? Whom do they benefit (Paull, 2010; Wanat, 2008)?
Lastly, we considered whether the HREC made any use of the approval information collected? Did having a collection of approvals have any value?
In a separate strand of research, we examined access – or lack of it – to universities for outsiders (Vadeboncoeur et al., 2016). Here we identified there is much opportunity for change. These institutions, supposedly there to support research, offer a largely closed door to researchers from elsewhere. It is very hard to find the doorbell and, once found, the people who answer it don’t necessarily know what to do with the guest. We examined whether universities should be encouraged to establish an independent body to manage requests for external research, and/or whether HRECs should introduce a requirement to inform such gatekeepers at institutions about proposed external research, rather than requesting approval (Emmerich, 2016). We concluded that one needed to be thoroughly experienced with the structure of universities to make one’s way through the labyrinth.
Although gatekeeper approval was required for a direct approach by email, ethics approval had been granted to recruit via social media which essentially has no boundaries, and thus no gatekeeper. The reviewers asked us to add text about the benefit of recruiting in this manner.
The review process for this paper took many months and many versions; there can be no doubt the paper is better for it, although it has ended up very long. I hope this paper will lead HREC Committee members to read the National Statement (National Health and Medical Research Council, 2018) carefully, particularly Chapter 5.7 which discusses accountability and 5.1 which includes institutional research governance responsibilities, examine their processes and the query the need for such approvals. Time will tell.
References
Christian, K., Johnstone, C., Larkins, J., & Wright, W. (2019, September 17). The need to seek institutional approval to survey staff –was this a misunderstanding of the purpose of Guideline 2.2.13 in the National Statement on Ethical Conduct in Human Research? Research Ethics Monthly. https://ahrecs.com/human-research-ethics/the-need-to-seek-institutional-approval-to-survey-staff-was-this-a-misunderstanding-of-the-purpose-of-guideline-2-2-13-in-the-national-statement-on-ethical-conduct-in-human-research
Christian, K., Johnstone, C., Larkins, J., & Wright, W. (2022). Seeking Approval from Universities to Research the Views of Their Staff. Do Gatekeepers Provide a Barrier to Ethical Research? Journal of Empirical Research on Human Research Ethics, 15562646211068316. https://doi.org/10.1177/15562646211068316
Emmerich, N. (2016). When is a REC not a REC? When it is a gatekeeper. Research Ethics, 12(4), 234–243. https://doi.org/10.1177/1747016116651668
Guillemin, M., Gillam, L., Rosenthal, D., & Bolitho, A. (2012). Human Research Ethics Committees: Examining their Roles and Practices. Journal of Empirical Research on Human Research Ethics: An International Journal, 7(3), 38–49. https://doi.org/10.1525/jer.2012.7.3.38
Hedgecoe, A. (2016). Reputational Risk, Academic Freedom and Research Ethics Review—Adam Hedgecoe, 2016. Sociology, 50(3), 486–501.
McFadyen, J., & Rankin, J. (2016). The Role of Gatekeepers in Research: Learning from Reflexivity and Reflection. GSTF Journal of Nursing and Health Care, 4(1), 82–88. https://doi.org/DOI: 10.5176/2345-718X_4.1.135
National Health and Medical Research Council. (2018). National Statement on Ethical Conduct in Human Research (2007)—Updated 2018. Commonwealth of Australia, Canberra. https://www.nhmrc.gov.au/about-us/publications/national-statement-ethical-conduct-human-research-2007-updated-2018
Paull, M. (2010). Gatekeeper Negotiation: Seeking the Magic Ingredient. ANZAM 2010, Adelaide, Australia.
Singh, S., & Wassenaar, D. (2016). Contextualising the role of the gatekeeper in social science research. South African Journal of Bioethics and Law, 9(1), 42. https://doi.org/10.7196/SAJBL.2016.v9i1.465
Vadeboncoeur, C., Townsend, N., Foster, C., & Sheehan, M. (2016). Variation in university research ethics review: Reflections following an inter-university study in England. Research Ethics, 12(4), 217–233. https://doi.org/10.1177/1747016116652650
Wanat, C. L. (2008). Getting Past the Gatekeepers: Differences Between Access and Cooperation in Public School Research. Field Methods, 20(2), 191–208. https://doi.org/10.1177/1525822X07313811
This post may be cited as:
Christian, k. (14 February 2022) Investigating an ethical barrier – should HRECs require gatekeeper approval from universities before external research? Research Ethics Monthly. Retrieved from: https://ahrecs.com/investigating-an-ethical-barrier-should-hrecs-require-gatekeeper-approval-from-universities-before-external-research/