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Is the pre-recruitment of research participants potentially an ethical issue in Australia? (David Hunter)1

Posted by Admin in Human Research Ethics on June 11, 2015 / Keywords: , , , ,
 

I’ve recently published a paper focused on the UK looking at some ethical issues faced by a practice that has developed for the recruitment of research participants there, called pre-recruitment. http://jme.bmj.com/content/early/2015/02/19/medethics-2014-102639.abstract. Given the difficulties recruiting research participants, companies have formed who source research participants for researchers, particularly for pharmaceutical research. They do this primarily by recruiting potential participants onto lists and then selling access to these lists to researchers.

This is hardly a new practice, informally researchers often keep lists and contact details for previous participants so they can recruit them onto future studies which is a form of pre-recruitment in itself. However having become a commercial business worrying trends have emerged in the UK regarding the information provided to the pre-recruited, where they may be promised that they will earn thousands of pounds, help cure cancer and be heroes if they just agree to volunteer.

What is problematic about this is that no research ethics committee in the UK and I suspect none here either would approve a project which made such statements in its recruitment literature. However because this is pre-recruitment it is entirely unregulated. And worse still the research ethics committee reviewing the actual study that draws on this pool of pre-recruited participants will probably not know they have been pre-recruited, nor what information they were given prior to their recruitment to a specific study. This is problematic both because it makes a mockery of the careful provisions we have established regarding informed consent to ensure it is valid (avoiding explicit incentives, emotive language and over promising results) but also because it presents the participants with conflicting information, which turns the consent process into a game they play to get to the results (a fortune, cure for cancer etc) rather than a careful reflection on whether they want to participate.

Like in the UK, presently in Australia the pre-recruitment of research participants is entirely unregulated – specifically the National Statement wouldn’t apply to pre-recruitment since it is not directly the recruitment of research participants though we might think best practice in pre-recruitment would follow the norms established by the National Statement and enforced by Human Research Ethics Committees (HRECs) for the direct recruitment of research participants in Australia.

So how should HRECs respond to pre-recruitment? Pre-recruitment is difficult to regulate both because it is prevalent and because unlike research itself it does not have a public output at the end of it. I’d suggest that the best way forward is for a section on pre-recruitment be added to the National Ethics Form. This should ask if any research participants have been pre-recruited, and if they have copies of the recruitment literature and materials should be provided to the HREC reviewing the research. If the HREC considers that material to be misleading or inadequate it can then turn down the study, or at least require a different recruitment method. This is likely to quickly change the practices of pre-recruitment companies since if researchers can’t get ethical approval if they use pre-recruiters their business model will swiftly fail.

Dr David Hunter
Associate Professor of Medical Ethics
Southgate Institute,
School of Medicine,
Flinders University
David.hunter@flinders.edu.au

This blog may be cited as:
Hunter, D (2015, 11 June) Is the pre-recruitment of research participants potentially an ethical issue in Australia? AHRECS Blog. Retrieved from https://ahrecs.com/human-research-ethics/is-the-pre-recruitment-of-research-participants-potentially-an-ethical-issue-in-australia-david-hunter

Critical and Indigenous Perspectives on Research Ethics in the Social Sciences1

 

Really pleased to have negotiated with Deborah Poff that the Journal of Academic Ethics will carry a Special Issue dedicated to Critical and Indigenous Perspectives on Research Ethics in the Social Sciences. I’ll be working as a guest editor with Martin Tolich and Barry Poata Smith to select papers from the international Ethics in Practice Conference held at Otago University in May 2015. This Conference follows on from the Ethics Rupture Summit run in Canada in 2012. The three themes of the New Zealand conference were: Ethical Surprises in Research Practice; the Indigenous Context in Research Practice; and a review of The 2012 New Brunswick Declaration.

The theme for the Special Issue, critical and indigenous perspectives on social science research ethics, is not one that has attracted much attention in the research ethics field and certainly not from the research ethics journals, with the nearest comparisons being the superb handbooks by Mertens and Ginsberg (2008), and Denzin, Lincoln and Smith (2009). Mertens and Ginsberg’s collection was ground-breaking in placing indigenous and critical challenges to principlism at the centre of the work and, like Denzin et al., offering a broad range of international perspectives. We also look forward to Will van den Hoonaard and Ann Hamilton’s collection from the 2012 Summit which is now ‘in press’ with University of Toronto Press (admittedly, partly because Gary Allen, Colin Thomson and I have a chapter in it!).

This blog may be cited as:
Israel, M (2015, 7 June) Critical and Indigenous Perspectives on Research Ethics in the Social Sciences. AHRECS Blog. Retrieved from https://ahrecs.com/human-research-ethics/critical-and-indigenous-perspectives-on-research-ethics-in-the-social-sciences

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