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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

A place for expedited ethics review of time-critical above-low risk research2

 

“Have you got ethics yet?” is a question asked frequently where health, social and behavioural sciences postgrads gather on campus. The amount of time human research ethics committees take to approve an application is also a common topic of conversation among university staff. Researchers often, it seems, grumble about delays in beginning their data collection while their ethics application awaits approval. As a recently retired chair of an ethics committee I confess that I rarely felt sympathy for these grumblers. Mostly, it seemed to me, they simply failed to plan their research time-line to match the clearly stated realities of the ethics application and approval process. However, I believe that ethics committees need to have in place processes which can take accommodate an important issue in need of research which has arisen unexpectedly and where data collection is time critical—such as following a disaster event where agencies need researchers to be in the field collecting data from those affected before the quality of the information is compromised with the passage of time.

Starting with the 2009 Victorian Black Saturday bushfires (173 deaths, 2029 homes destroyed) I have been involved in several post-bushfire field research interview surveys of affected householders about their pre-fire bushfire risk perceptions, plans and preparations, and their decisions and actions during the fire. The studies were conducted at the request of fire and emergency management agencies. No adverse incidents occurred. The findings have assisted agencies in reviewing and refining their community bushfire safety policies and procedures. A good case can be made that the timely information gained by the post-bushfire interview research has contributed to improved householder bushfire safety.

In the post-bushfire research where I was the chief investigator 2011 – 2014, approval of these above-low risk studies by my university’s Human Ethics Committee was speedy—within 72 hours. Each application was in the form of a modification of an originally-approved application from 2009. However, colleagues across a range of institutions have told me that it would be very difficult for them to undertake similar post-disaster research because of the time that would be required to obtain approval of such above-low risk research from their human research ethics committee. Concerned about this apparent situation, I decided to investigate how many Australian university human research ethics committees (UHRECs) had provisions for expedited review of above-low risk research.

In a collaboration with the Bushfire and Natural Hazards CRC, I sent a short survey questionnaire to all 39 Australian UHRECs in mid-2014. There were 28 responses (72%). Nine (32%) of the 28 reported having provisions for expedited review of above-low risk research; four described formal arrangements, five described ad hoc arrangements at the Chair’s discretion. Nineteen (68%) had no such provisions. Six of these 19 (32%) described possibilities if the circumstances were sufficiently compelling, the remaining 13 stated simply that they had no such provision. Six UHRECs described preferred arrangements for researchers to submit a generic application well in advance of an actual event and obtain provisional approval, and then submit a detailed application for modification when the specifics were known. A detailed report of findings is at http://www.bnhcrc.com.au/publications/biblio/bnh-1881

I believe that UHRECs which have no provisions for expedited review of above-low risk research do their institution, and the wider society, a disservice.

Jim McLennan is an adjunct professor in the School of Psychology and Public Health at La Trobe University, Melbourne. You can access Jim’s La Trobe University profile here and he can be contacted at J.McLennan@latrobe.edu.au.

This blog may be cited as:
McLennan, J. (2016, 22 February) A place for expedited ethics review of time-critical above-low risk research. Research Ethics Monthly. Retrieved from: https://ahrecs.com/uncategorized/a-place-for-expedited-ethics-review-of-time-critical-above-low-risk-research

Taking Time in the Midst of a Crisis: Prior Informed Consent, Sociability and Vulnerability in Ethnographic Research3

 

As an anthropologist, the way I work has particular features which are, in my view, both empowering and paralysing. This is especially the case when working with people who define themselves or who are defined as vulnerable, and in field contexts which are challenging, difficult or unpredictable. In this post, I would like to address Prior Informed Consent procedures as an example of the ethical challenges that I need to address in my new project which aims to interact and collaborate with one of the most vulnerable populations entering the European Union today: undocumented pregnant refugees and migrants.

My ERC-funded project, entitled ‘Intimate Encounters in EU Borderlands: Migrant Maternity, Sovereignty and the Politics of Care on Europe’s Peripheries’ is a comparative study of maternity care delivery towards undocumented pregnant migrants in EU Borderlands. Research will be carried out in 7 maternity care services located in the densely crossed borderlands of 4 EU Member States. Most of the maternity care services in question are in the Mediterranean, in Italy, Spain and Greece, but two field sites are also located in Overseas France, in French Guiana and Mayotte (in South America and in the Indian Ocean respectively). All of the field sites are to be found on Europe’s external borders, in remote peripheries which have very specific social and economic identities in relation to the rest of the country. My main interest lies in studying doctor-patient interaction from a moral and biographical point of view, and in documenting life in these peripheries from the perspectives of the full range of actors involved. Ethnographic data will be collected during a 16 months long fieldwork period which will span the second and third years of the project, and which will involve all project team members (that is myself and three other researchers).

Research will be carried out through long-term participant observation of everyday life in the field locations. Commitment to the research from all research participants will have to be total, as my team and myself will have to physically move (taking our families along with us) to the field sites for the whole duration of the fieldwork. Working times will vary according to circumstances, but could involve day and night-time work, every day of the week. This kind of research requires flexibility, adaptability and resilience.

Long-term participant observation is peculiar: it is an ecosystem of its own, which may appear intense and exotic, but which often feels awkward, lonely and frustrating. Time takes on a different texture and daily routines are upset by the turns of events. Building social relations based on amity at first, and trust in the long-term with a wide range of people is not generally something which can happen overnight. For this reason I am convinced that when working with vulnerable subjects, the investment of time affords a great advantage in contributing to ethically-sound research.

Anthropologists approaching a field site have to prepare their fieldwork through an extensive, collaborative, multi-level process of introduction, presentation, authorisation and consent, which works concurrently at communal and individual level. It is very common to hear that for anthropologists fieldwork starts at home, as they slowly gather the first contacts and points of reference, through which they will seek affiliations, authorisations, permits, and translate their research objectives according to the audiences they deal with.

As anthropologists, our entry into a field context often follows a gradual scoping process based on information and presentation, which navigates several levels of leadership and authority. Only once all authorisations are cleared can fieldwork at community-level begin. And from community-level, one can approach individuals or family units. Because the personal and emotional involvement of fieldwork is so high, the social bonds which develop through long-term fieldwork are deep and long-lasting. In this context, consent in research is to be considered as a flexible, long-term commitment to the well-being of the source communities, and their regular updating on the progress of the research. This commitment can last a lifetime.

In the context of my new research project, a good proportion of the persons I will be working with belong to a highly mobile and invisible population with whom the nurture of social bonds may not be easy to maintain, to say the least. My ERC-funded project includes, among other research participants, undocumented migrants. Some of these migrants will be pregnant, others may be minors, and some will be both. This means that they represent another category of vulnerability than people I had been previously working with who belong to remote ethnic minorities (I have been working with Amerindian communities of northern Amazonia in Suriname and French Guiana since 2003). The social and political contexts in which research is carried out are always shifting, and there is no single definition of vulnerability, nor one single form of social interaction during ethnographic fieldwork. Approaching each specific social context requires good prior knowledge and a great deal of flexibility. For instance the pregnant patients I might have to interview are generally likely to have higher levels of literacy than the indigenous women with whom I was sharing the intimacy of daily life in the interior of Suriname. It may be easier to establish some form of initial communication, since there are likely to be more common cultural references. Personal, emotional and physical circumstances may however be extremely different. Moreover, whereas I have been working since 2005 in clinical contexts, these can vary greatly, and medical environments can be extremely hierarchical structures in which self-determination and agency can be challenged by the most simple acts.

In such challenging research environments, single solutions are impossible to envisage as circumstances can change very rapidly. As others have noted, ‘prior informed consent of research participants does not in itself make human-subject research ethical’ (Rosenthal 2006: 119), nor does it guarantee that all research participants and other human subjects will behave ethically. Obtaining prior informed consent in such challenging contexts first of all requires time. Having time to use the appropriate channels to seek authorisations in due course, to develop an extensive web of social contacts, and only gradually to approach the most vulnerable research participants. To ensure as independent and unbiased a process as possible, researchers in the field have to be aware of local circumstances and dynamics, and resist the temptation to rush into a challenging research environment currently at the centre of a media frenzy over what is often portrayed as an escalating EU migration crisis.

Reading a newspaper in Italy – and any other EU Member State for that matter – is a painful experience. I am constantly exposed to images of despair and tragedy unfolding in my country’s territorial waters. I often feel like rushing there to finally get started documenting the voice of those who remain invisible, but rushing is not the way to go about it, despite the climate of crisis and urgency. Ethically-sound research takes time, even more so in the midst of a crisis.

Reference:

Rosenthal, J. 2006. ‘Politics, Culture, and Governance in the Development of Prior Informed Consent in Indigenous Communities’, Current Anthropology 47(1): 119-142.

Vanessa Grotti
European University Institute
Vanessa’s EUI page
Vanessa.Grotti@EUI.eu

This blog may be cited as:
Grotti, V. (2016, 26 January) Taking the Time in the Midst of a Crisis: Prior Informed Consent, Sociability and Vulnerability in Ethnographic Research. AHRECS Blog. Retrieved from: https://ahrecs.com/human-research-ethics/taking-the-time-in-the-midst-of-a-crisis-prior-informed-consent-sociability-and-vulnerability-in-ethnographic-research

Aboriginal research and ethics: Could we be making it harder than it really is? Six things to focus your decision making1

 

What do we know?

I wish I could say there’s a simple formula that will reduce the anxiety of researchers (both Aboriginal and non-Aboriginal) when it comes to research that involves Aboriginal peoples. But I’ve found that when any of us put on a research hat (not just the lab coat), then this brings another set of expectations to the enterprise.

Karen Martin is an Associate Professor, School of Education and Professional Studies, since 2013 she has been the Deputy Chair: Griffith University Human Research Ethics Committee, and is a Noonuccal woman from North Stradbroke Island (south east Queensland) with Bidjara ancestry (central Queensland).

How do I know this? To be honest, it comes more from my research experience and training more than my Aboriginal experience. What???? Yes…it’s true because research has a particular purpose with particular expectations, including ethics. That’s something often misunderstood when it comes to research with Aboriginal peoples. In the same way as not all researchers understand Aboriginal peoples, not all Aboriginal peoples understand research.

So, over time, I’ve been thinking just as much about the ‘what’ and the ‘how’ and the ‘why’ that is Aboriginal research and ethics to be offering the following points. I’ve had to limit myself, so here the six main things for making Aboriginal research ethics far less complicated.

What could we do (or not do)?

1) Don’t treat the research design as separate to the research ethics: Treat them equally and start the ethical considerations at the same time as the design and methodology. Waiting until the 11th hour is guaranteed to bring confusion; headaches; frustration that no amount of creative writing will alleviate this.

2) Don’t lower the bar on your research decisions: We’re in the best position of anyone to think within and outside the boxes of institutional requirements and legalities. We’re the academics and we’re the scholars. Use your knowledge of research and of the contexts and conditions of the research to resolve dilemmas, and at all costs, please don’t lower the bar. Where you have limited knowledge, do what all scholars should… (no, don’t just Google it)… gather information and get advice. Understanding (not just reading) the Australian Institute of Aboriginal and Torres Strait Islander Studies’ (AIATSIS) Guidelines for Ethical Research in Australian Indigenous Studies (GERAIS), 2012 and the NHMRC’s Values and Ethics, 2003 is a good start.

3) Don’t turn the bar into a benchmark: Given that research occurs in institutions that are the pinnacle of knowledge and education (you simply can’t go higher), then resting on your reputation or your identity could work counter to knowledge building. At worse, it could be stagnation (having become too comfortable) or it could be rigidity (having become fixed and unchanging). What’s the solution? Go for rigour and go for scholarship (see No. 2).

4) Don’t over-complicate the research and so, the ethics: This can happen when the AIATSIS or NHMRC Guidelines are treated as a checklist, especially in developing the research ethics application. The key word here is ‘guidelines’ and so they’re effective in guiding your decisions throughout the entire research (see No. 1). The old KISS adage (Keep It Simple Scholars) iskm_1512invaluable here.

5) Don’t lose sight of the research purpose: Here’s where we might have differing ideas. Mine (and this is reinforced by the AIATSIS and NHMRC Guidelines) is the main research beneficiaries (as different to research data users) have to be Aboriginal peoples and communities. So, give just as much attention to deciding how they will benefit. Show that you understand the contexts of the research and the conditions under which it will operate. Write this clearly in the ethics application.

6) Don’t be a ‘consumer’ of literature of Aboriginal research ethics: Be a scholar and always
be scholarly. Show that you have more than a surface level of information (i.e. only cite certain authors or documents). Demonstrate where and how such literature has indeed informed your thinking and decision making. Next, give due attention to how you write (and avoid perpetuating stereotypes or misinformation) as much as to how you research and understanding of the role of an ethical researcher and ethical research. Words can wound.

What does this all mean?
There are both macro levels of research and ethics as there are micro levels. Knowing this is a strong start to being able to attend to both from the outset and at all phases during the research. Here’s an image that will help understand this point. It’s about working the macro and the micro; breaking through the barriers and not lowering the bar.

* Are there any short cuts? NOOOO.

* Is there another way to do this? This is the second decade of the 21st Century (not the 15th Century, 18th or 20th Century).

* What do I do next? Step back; think about the macro levels and the micro levels of the research; begin your research ethics at the same time as the research design and expect to learn deeply.

* Whatever you do… don’t be a ‘consumer’. You’re a scholar and your core business is knowledge acquisition; knowledge transfer and its transformative power.

References

Australian Institute of Aboriginal and Torres Strait Islander Studies. (2012). Guidelines for ethical research in Indigenous Studies. Retrieved from http://www.aiatsis.gov.au/sites/default/files/docs/research-and-guides/ethics/GERAIS.pdf

National Health & Medical Research Council. (2003). Values and ethics guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research. Canberra: Commonwealth of Australia. Retrieved from http://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/e52.

Assoc Prof Karen Martin
School of Education and Professional Studies, Griffith University
View Karen’s EPS profile
karen.martin@griffith.edu.au

This blog may be cited as:
Martin, K (2015, 23 December) Aboriginal research and ethics: Could we be making it harder than it really is? Six things to focus your decision making. AHRECS Blog. Retrieved from https://ahrecs.com/human-research-ethics/aboriginal-research-and-ethics-could-we-be-making-it-harder-than-it-really-is-six-things-to-focus-your-decision-making

The seductive peril of precedent-based decision making1

Posted by Admin in Human Research Ethics on November 15, 2015 / Keywords: ,
 

Human research ethics committees face workloads that can very easily become crippling, consequently precedent-based decision making can appear to be a sensible survival strategy.

An HREC might decide to adopt such a strategy for several reasons:

• a desire to turnaround applications for research ethics review as quickly as possible;

• a commitment to being consistent and fair;

• to minimize the demands on committee members; and

• keep the discussion moving in meetings.

Typically such a survival strategy might relate to a component of a research design: ‘What do we normally do when researchers want to offer a prize-draw as an incentive to encourage participation?’. It might also be about the potential participant pool or context, ‘What did we do the last time an application related to research in China?’. Sometimes it can relate to the researchers, ‘Have we allowed counsellors to conduct research on their own clients before?’. Or, even more troublingly, it might pertain to an entire research discipline, methodology or research practice, ‘What did we do the last time we reviewed participatory action research?’.

There is a fair chance that the committee/other review body will not have specifically discussed adopting a precedent-based approach. It might be previously the Chair and/or ethics officer have previously been challenged by an applicant, ‘The last time you reviewed research like this you…’.

Making decisions by precedent has the allure of a legal approach which can seem to provide a decision authority, fairness and a degree of predictability that all might seem to make the work of the reviews more professional. It also looks deceptively like the philosophical approach of casuistry which uses reasoning by analogy to tackle complex ethical issues.

But, it is a seductive trap and Committee Chairs, members and ethics officers should be very wary.

Precedent-based thinking has a number of serious flaws:

a. Decisions should be based upon the specifics of individual projects – the research design, the question/objectives of the work, the potential participant pool, the context, the risks and benefits of the project, and the expertise of the researchers. In Australia, the National Statement is based on principles not rules and HRECs should not attempt to subvert the basis of the National Statement for their own convenience. Those countries that have adopted inflexible rules about research ethics have not had a happy experience and the United States is just taking the first steps away from this (Dingwall, 2015);

b. Applicants may well not have access to information about those precedents, so rather than the decision being seen as fair and consistent it might be seen as arbitrary and unfair;

c. Precedent-based decisions are likely to be conservative and risk averse; and

d. Such decision making encourages researchers to outsource their ethical responsibilities to the reviewers, ‘There is no way I can know all about research ethics review so I’ll just tell the reviewers what I want to do and they’ll tell me is it’s okay’. It also reinforces the message that the review is a one way communication, with edicts being issued, rather than an engaged and reflective discussion.

So what is the alternative?

Research ethics review bodies and research offices should work together to produce resource material for researchers and reviewers that identify ethical matters requiring attention, relate them to the principles and provisions of the National Statement (or relevant national framework) and provide the basis for the constructive approach to addressing those challenges.

Research ethics review decisions should reference the resource material, the national framework/institutional policy, and invite researchers to share their reflections on the given matter and explain why the propose approach is better/more appropriate for the specifics of the situation.

If a project is novel and/or applicants produce an elegant solution to an ethical challenge they should be congratulated (not beaten over the head with a precedent) and perhaps the solution included in the resource material.

The best solution to crippling workload might be to work smarter, rather than inflexibly.

Reference
Dingwall, R (2015) Deregulating Social Science Research Ethics – Clipping the Wings of IRBs? Social Science Space, blog posted 5 November http://www.socialsciencespace.com/2015/11/deregulating-social-science-research-ethics-clipping-the-wings-of-irbs/

Contributor
Gary Allen is the author of the Griffith University Research Ethics Manual a resource manual for researchers and research ethics reviewers.

This post may be cited as:
Allen, G (2015, 16 November) The seductive peril of precedent-based decision making. Research Ethics Monthly. Retrieved from https://ahrecs.com/human-research-ethics/the-seductive-peril-of-precedent-based-decision-making

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