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Navigating ‘Research Fatigue’0

 

In human research, some groups of people (grouped by identity, association, condition and/or location) may become over-represented as research subjects in a particular discipline, or in research generally. These people may develop a sense of ‘research fatigue’ (Clark, 2008) – in simple terms, they’ve been over-researched and now they’re just over it. It is likely that a sense of being mistreated by researchers, a lack of trust between participants and researchers/institutions, and/or a failure of research to return any kind of benefit to the participant community, may exacerbate research fatigue. Subsequently, they may be reluctant to participant in any further research (Clark, 2008).

People belonging to marginalised or vulnerable groups may be particularly susceptible to over-research and research fatigue. This is partly because such groups may be identified as having persistent problems social or medical researchers may be hoping to help, and perhaps also because people in these groups have disproportionately suffered from poor and unethical research practices. For example, in Australia, Aboriginal and Torres Strait Islander Peoples have frequently been the subjects of research conducted without permission, or without due consideration to appropriate and ethical processes (Knight, Comino, Harris, & Jackson-Pulver, 2009; Martin, 2003).

I conducted my PhD research with an over-researched community. The people of North Stradbroke Island/Minjerribah – particularly (but not exclusively) the Quandamooka and other Indigenous Peoples of the Island -are suffering from research and consultation fatigue, and many had complaints about the way they had been treated by earlier researchers, or the fact that the issues they prioritised were being ignored.

Several months after my field work concluded, a colleague of mine – Rachael Cole-Hawthorne, another PhD student – began her fieldwork on North Stradbroke Island/Minjerribah with the Quandamooka Peoples. She encountered an unanticipated ethical difficulty; participants in my research (or people who had heard about me and my research – it’s a small community and people talk!) sometimes mistook her for me. We were PhD students from the same institution, after all, and bore a passing resemblance to one another. The issue of mistaken identity was always laughed off, however it meant that the anonymity of some of my participants had been unintentionally compromised; if they hadn’t mistook Rachael for me, they may not have mentioned their participation in my project.

It also became clear to Rachael that the success of her research rested, to a degree, on the goodwill I had developed. If I had treated participants poorly, or if they found participation unpleasant or uncomfortable, she may have encountered difficulties in recruitment.

As a result of these experiences, Rachael and I are working together on the topic of ethical research with over-researched communities. Our (very) preliminary thoughts, based on a review of the literature and our research experiences to date, suggest a few key considerations for researchers. Firstly, one should not dismiss the possibility of engaging with an over-researched community on that basis alone, but there is a particular onus on the researcher to justify why this site/these people, including to the participants themselves. Obvious relevance and utility, and clear links to the ‘uniqueness’ of that community that makes them the best pool of participants may help overcome initial wariness (and weariness). There is, perhaps, extra impetus to demonstrate a genuine commitment to the over-researched group, and focus additional attention on the building and maintaining of relationships. For me, this included spending as much time as I could on the Island, for blocks of time, rather than making day trips or just talking to people on the phone. Finding ways to connect potential participants to the research topic, and finding ways to deliver meaningful and useful outcomes for them, is also of heightened concern in research fatigued communities. Exploring alternative epistemologies and methodologies may help, including those that allow participants to influence the research approach, analysis, and products. Not only may alternative approaches help create a less exploitative and more mutually beneficial research relationship, the sheer novelty of them may help overcome fatigue. And, as always, researchers should be prepared to hear ‘no’, to respect that answer, and should have a Plan B in case they just can’t overcome research fatigue.

Rachael and I are collaborating with some of our research participants, particularly amongst the Quandamooka community, in putting together an open access publication that will explore these issues. In that vein, we hope to present a few different perspectives on the topic of research fatigue, illuminate some of the issues for researchers to consider when seeking to engage with an over-researched group, and identify some principles and guidelines for ethical practice in this area that are grounded in the experiences of those who are subject to over-research. Stay tuned!

References

Clark, T. (2008). ‘We’re Over-Researched Here!’: Exploring Accounts of Research Fatigue within Qualitative Research Engagements. Sociology, 42(5), 953-970.

Knight, J. A., Comino, E. J., Harris, E., & Jackson-Pulver, L. (2009). Indigenous Research: A Commitment to Walking the Talk. The Gudaga Study – an Australian Case Study. Bioethical Inquiry, 6(4), 467-476. doi: 10.1007/s11673-009-9186-x

Martin, K. B. M. (2003). Ways of knowing, being and doing: A theoretical framework and methods for indigenous and indigenist re-search. Journal of Australian Studies, 27(76), 203-214.

Dr Natalie Osborne,
School of Environment, Griffith University,
View Natalie’s ResearchGate profile,
n.osborne@griffith.edu.au

This blog may be cited as:
Osborne, N (2015, 2 November) Navigating ‘Research Fatigue’. AHRECS Blog. Retrieved from https://ahrecs.com/human-research-ethics/navigating-research-fatigue

Ethics and the privacy pendulum3

 

As the development of new technologies advances at a rapid pace, the ability to access, search and link information in new and different ways also continues to grow. Current legislative and governance frameworks regarding data privacy were developed at a time when these possibilities were not foreseen and are now an inadequate fit for this brave new world. Research ethics guidelines in particular struggle to accommodate not only the new mediums of communication, such as social media, but the ways in which this type of data can be harvested (often unknowingly) and connected to formerly disparate pieces of benign or de-identified data to create incredibly detailed pictures of peoples’ lives, views and aspirations. Ethics committees also grapple with assessing the risks and benefits of research at a time when the privacy pendulum has swung from what was a common central belief within the community (and indeed a human right) of the importance of protecting privacy at all costs to a more stratified set of values that include younger generations who actively seek out public connectedness and openly share almost all aspects of their lives in the public domain. How are the views of these generations and their sense of what constitutes risk and benefit captured in the deliberations of ethics committees whose membership often (although not exclusively) is made of Gen X-ers or baby boomers?

One of the real strengths of ethics committees is the diversity of experience and opinions they bring to bear on debating and resolving the ethical challenges of research that is driving new frontiers of technology and its exploration of all that it means to be human. Ensuring multi-generational membership of ethics committees that capture these stratified values can only add to this strength. However there is also a need for researchers and committees to stay engaged with public debate to understand evolving community values regarding privacy and our information. Why? Because one thing is for certain – a pendulum never stays at the peak of its swing for long and it already appears to be on the move again. This time the driving force is not a generational change but the rapid rise of big data and the associated realisation of the tangible market value of our information. Knowledge is power, and data, and the ability to harness and explore it in all its forms, is now big business. As individuals and enterprises join the new race to protect the IP associated with their data and mitigate against the risks that can arise from its misuse, they are also demanding their fair share of the benefits that can flow from its potential exploitation. Principles of privacy, justice and consent in this new context will require new considerations by researchers and ethics committees alike.

This blog may be cited as:
Pitkin, C (2015, 6 October) Ethics and the privacy pendulum. AHRECS Blog. Retrieved from https://ahrecs.com/human-research-ethics/ethics-and-the-privacy-pendulum

Cathy Pitkin
Manager Social Responsibility and Ethics CSIRO

Cathy Pitkin is responsible for the management of human and animal CathyPitkinresearch ethics for CSIRO. In this role she has led the development and implementation of a human research ethics framework for the organisation and manages the ethics review and associated support process for research scientists undertaking a diverse range of social, biophysical and interdisciplinary research. She has over 10 years experience working with researchers and research managers across multiple disciplines in considering the ethical dimensions of their research and ensuring that ethics principles are embedded as a core part of research design and implementation. This experience includes research that involves emergent technologies, privacy and other related social considerations. Cathy has an in-depth knowledge of current national ethics guidelines and related legislation and broader frameworks for research ethics governance. She regularly provides training to researchers and ethics committee members and has developed a suite of resources to support good research practice.

Prior to this role she was Director of Communication, Education and Training with CSIRO’s Social and Economic Integration Emerging Science Initiative which focussed on building capacity for and greater consideration of social and economic issues in biophysical research.

Before joining CSIRO Cathy worked in a range of community development, training, project management and communications roles in the private, government and NGO sectors. She has a Masters degree in community and international development and undergraduate degrees in social science and business.

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

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