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Can you hear us? The Queensland experience of health research with Aboriginal and Torres Strait Islander people0

 

There is growing concern in Queensland about the conduct of health research meeting Indigenous research ethical principles and standards. Key stakeholders raised these concerns during consultations within the national review of Indigenous research ethics commissioned by the National Health and Medical Research Council (NHMRC).

Although the final report is yet to be released, some discussions noted the absence of a Queensland based accredited ethics review body, like that of New South Wales Aboriginal Health and Medical Research Council (AHMRC) and Western Australia Aboriginal Human Ethics Committee (WAAHEC), to coordinate Indigenous ethical review of health research.

The establishment of such accredited state based Indigenous research ethics review committees indicates a lack of confidence by Indigenous peoples in other institutionally based research ethics boards and their review / approval processes. This also indicates that Indigenous people want to have leadership, control and appropriate representation in the review of research ethics applications.

This raises the question on whether there should be one centralised Indigenous research ethics review and approval process nationally or increase the number of state and territory based review bodies. As a researcher, I often lament on the number of approval processes that are required to undertake research with Indigenous people. However, given the number of research projects that have been undertaken in Indigenous communities that have not led to sustainable benefit or impact, one can see why there is disillusionment by Indigenous people about research “on” Indigenous people.

You can view Prof Adrian Miller’s Griffith University biography here.
You can contact Prof Adrian Miller at adrian.miller@griffith.edu.au

This blog may be cited as:
Miller, A. (2016, 24 March) Can you hear us? The Queensland experience of health research with Aboriginal and Torres Strait Islander people. Research Ethics Monthly Retrieved from: https://ahrecs.com/human-research-ethics/can-hear-us-queensland-experience-health-research-aboriginal-torres-strait-islander-people

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

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

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.

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