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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Terms and conditions apply0

 

Kids tell us that making decisions can sometimes be hard (anyone who has taken a child to an ice cream shop can attest to this). Adults don’t often give children choices and kids tell us that when they do it can be confusing: ‘what am I being asked?’, ‘can I really say no?’, ‘do they seriously care?’ and ‘what will happen if I make a decision the adult doesn’t like?’ are questions that might spring to mind. After all, they tell us that it’s not usual for adults to seek out children’s views, to let them make big decisions or to give up some of their ‘adult power’ and act on children’s wishes.

And yet children are required to ‘assent’ to research, often with little information about what research actually is and what they will be required to do. In most cases, they know that their parents have already given permission for them to be involved – which may be reassuring but also a bit daunting (how often is it that kids can say ‘no’ when their parents have already said ‘yes’?) – but in most cases a complete stranger comes into their home or schoolroom and pulls out a note pad and asks them whether their happy to answer a few questions. “Um OK?”

Since the Helsinki Declaration there has been an expectation that children provide assent to their participation in research. Often this entails providing them with a long-winded, legalistic and ‘pretty boring’ information letter, telling them that if they agree they might get a movie voucher or at least a packet of chips and a can of soft drink before asking them to tick a box to show that they agree. As a child in one of my studies reported, the process is ‘kinda like’ the terms and conditions process they go through when downloading a new app from i-Tunes. Like 73% of Terms and Conditions non-readers, kids in research often have no idea what they are signing up for and what their rights are when things go wrong.

In a recent study my colleagues and I conducted for the Australian Royal Commission into Institutional Responses to Child Sexual Abuse we got advice from children and young people about how to best help kids understand and consent to participating in research on a fairly sensitive topic. Based on this advice we conceptualized consent as an ongoing process that included six steps: (1) present information in a child-friendly and accessible way; (2) make sure they understand what research is and what they are expected to do; (3) give them the choice to participate (or not) and ask them to formally agree; (4) give them lots of opportunities (and the skills or tools) to bow out of the research (particularly after they’ve got a ‘feel’ for what they are being asked to do) or to change the way that they are participating; (5) be aware of the ways that kids resist or ‘dissent’ (yawning or sneaking out of the room might give it away) and constantly ‘check in’ with them in child-friendly ways (6) Get an agreement with them at the end of the research activity that they are still happy for their input to be included in the study and negotiate what, if anything, they’re happy for the researcher to share with their parent, teacher or older sibling who is standing behind the door.

In the paper “More a marathon than a hurdle: towards children’s consent in a safety study” my colleagues and I outline how we went through these steps with kids, we describe how we used felt toys, ‘stop signs’ and ‘rights posters’ to help children and young people consent and, most importantly, quote advice and feedback from children and young people on how adult researchers might best help kids to make decisions within the research context.

One tool we feature in the article is our “Charter of Rights” poster which we provide kids in our studies. The poster informs them of what they should expect from us, as researchers, and what to do if they are unhappy. The poster is given to the children prior to them meeting with our staff and is further explained before assent is sought. On the advice of children and young people who have advised our projects, the rights charter has also been used as the basis of a series of games and activities that can be used to help children understand their rights in research (and in welfare practice). More detail about these can be found here. My team at the Institute of Child Protection Studies are working with peers from the Centre from Children and Young People (Southern Cross University), UNSW and the University of Melbourne to progress ethical research with children and young people. We’re currently hosting a survey on ethical decision-making – take a minute to fill it in! We’re keen to chat with others who are grappling with how to meaningfully engage kids in research (and support them to make good decisions) and would love to hear from you. *Terms and Conditions Apply.

Contributor
Dr Tim Moore
Senior Research Fellow | Institute of Child Protection Studies, ACU
Bio page at ACUTim.Moore@acu.edu.au

This post may be cited as:
Moore T. (2017, 21 July) Terms and conditions apply; Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/terms-conditions-apply

Professional Development across the Term of an HREC Committee Member0

 

AHRECS has considerable experience working with universities, hospitals, research institutions, government and non-government organisations to care for and build the capacity of its HREC Committee members across the entire term of their appointment. We start with the needs of our clients and offer support from recruitment all the way through to running an exit interview.

Many HRECs have quite simple manual-based inductions; we help HRECs to create something more welcoming and interactive that takes members from first contact to the point where they can contribute effectively to a committee. There is a significant difference between delivering a single ‘training session’ and creating a suite of professional development activities over two to three years, that covers committee members’ terms, and that might include dedicated annual PD and Strategy sessions and incorporate ongoing PD into each HREC meeting.

We can:

  • help recruit expert external members to meet the needs of specific HRECs
  • create interactive and multi-media induction and orientation materials
  • introduce members to the broader literature on research ethics
  • create material and run professional development sessions tailored to the specialist roles of particular HRECs
  • evaluate the performance of the HREC and provide feedback to the HREC and its host institution
  • offer exit interviews to HREC members stepping down from their role, and then….
  • help recruit replacement members to HRECs

We have provided elements of such services in Australia, Canada, Mauritius, New Zealand, Taiwan, United Kingdom, United States and Vietnam for new and established, small and large institutions and consortia of research organisations.

Contributor
Prof. Mark Israel, AHRECS senior consultant
AHRECS profile page
mark.israel@ahrecs.com

This post may be cited as:
Israel M. (2017, 22 June) Professional Development across the Term of an HREC Committee Member. Research Ethics Monthly. Retrieved from: https://ahrecs.com/services/professional-development-across-term-hrec-committee-member

Cracking the Code: Is the Revised Australian Code likely to ensure Responsible Conduct of Research?0

 

The Australian Code for the Responsible Conduct of Research is presently under review. Issued jointly in 2007 by the National Health and Medical Research Council, the Australian Research Council and Universities Australia, the current code is a 41-page document divided into two parts. Part A, comprising some 22 pages, sets out the responsibilities of institutions and researchers for conducting sponsored research responsibly. Part B, comprising approximately 11 pages, provides advice on procedures for identifying and investigating instances of the conduct of research in which those responsibilities have not been fulfilled.

The current proposal is to replace this document with a five-page statement of eight principles of responsible research conduct and two lists of responsibilities, again of institutions and researchers, together with a 25-page guidance document (the first of several) of preferred procedures for the identification and investigation of research conduct that has not adhered to the responsibilities set out in the five-page code.

Among the innovations in these changes, other than a significant reduction in the size of the document, is the proposal that the expression ‘research misconduct’ not be used in the guide on identification and investigation but be replaced by the expression ‘breach’. An important reason given for this proposal is the avoidance of conflict with the requirements of institutional enterprise bargaining agreements (EBAs).

The scale of the proposed changes is likely to generate extensive debate and this will have been disclosed in the course of the consultation period that closed earlier this year. The consultation process conformed to the minimal requirements of sections 12 and 13 of the NHMRC Act. This is a process that publicises, by formal means, drafts of proposed changes to which responses are sought. Current practice is to prefer provision of responses by electronic means and to require responders to answer questions determined by the Council. The passivity and formality of the process tends to attract and privilege better resourced interests. In some of the published debate that occurred during the consultation period, there was much attention to the change in scale and to the proposal not to refer to research misconduct but only to breach. This level of discussion risks ignoring several underlying systemic questions, or assuming the answers to them. It is the purpose of this brief opinion to tease out these questions.

The key premise of these remarks on the existing Code and any revision is that the Code constitutes a form of regulation of research conduct. With this premise comes a centrally important question: what are the aims of the regulation of this activity?

The apparent aims of the revision are the definition of responsible research conduct and relevant responsibilities, the identification, disclosure and investigation of failures to conduct research responsibly.

Underlying these aims lie some broader and deeper considerations. These include whether the purpose to be served by regulation of research is to:

  • protect the reputation of research;
  • prevent waste and misguided work that can follow from relying on irresponsible and inaccurate research;
  • protect the reputation of research institutions; to prevent the waste – or even the risk of waste – of public research funds;
  • penalise those who fail to fulfil their research responsibilities, whether the failures are on the part of institutions or individual researchers;
  • protect the public interest in research by promoting productive use of public research funds, and rewarding responsible researchers and institutions.

It is a regulatory situation not unlike that which faced environmental protection through the 1990s and later and other areas such as oil rig and building safety in the UK. One lesson from these experiences is that where the aims of regulation are the protection of the environment, the safety of buildings or oil rigs, they are more likely to be achieved by giving those who conduct relevant activities the opportunity to devise their own methods to achieve those regulatory aims, methods that are then assessed by a responsible authority against a set of standards. The shift from the tight prescription of safety standards to some form of well-defined and supervised self-regulation appears to have been successful in achieving regulatory aims.

The choice of which of the above purposes is to be served will have a direct and profound effect on the methods to be used. For example, if the purpose were the protection of the reputation of research institutions, it would not be surprising to extend a significant degree of autonomy to institutions to set up their own procedures and methods for promoting responsible conduct and so establishing their good reputation. However, there would be an incentive for institutions not to publicly disclose instances of irresponsible research but to manage these institutionally. Reliance on the need to conform to enterprise bargaining agreements might lend support to justification of such non-disclosure.

If the purpose were to penalise those institutions or researchers who fail to fulfil relevant responsibilities for responsible research conduct, the system would need to define those responsibilities with some precision, so that the definitions could be made enforceable, and to establish an agency with appropriate investigation powers and sanctioning authority to identify, investigate and reach decisions as to whether relevant responsibilities had or had not been fulfilled.

A relevant regulatory model may not be that of criminal prosecution but rather of corruption investigation. There is a public interest that motivates the establishment and operation of anti-corruption agencies. The outcomes of their enquiries can lay the foundation for individual punishment of those found ‘guilty’ of corrupt behaviour, and those proceedings are then taken up by different state agencies. Research integrity policy can be seen to have similar aims: first, to protect the public interest by empowering an independent agency to uncover corrupt conduct, and, second, following such a finding, to prosecute individuals by a separate process. A research integrity agency could be given the task of investigating and finding research misconduct, leaving to employers of those individuals the responsibility to impose consequences. Although remaining autonomous in following their own procedures, and so conformingh to EBAs, institutions would be likely to find it difficult to conceal the process because of the public finding of research misconduct that they are implementing.

The debate so far appears to have left most of these underlying questions either unanswered or to have assumed answers to them. Because this has not been explicit, those answers are unlikely to be consistent. For example, the chosen terminology discloses some of these assumptions. The responsibilities described in the five-page code are in very general form that would present considerable difficulties if they were to be used to determine whether they had been fulfilled. For example, what evidence would constitute a failure on the part of an institution to fulfil the obligation to develop and maintain the currency and ready availability of a suite of policies and procedures which ensure that institutional practices are consistent with the principles and responsibilities of the Code? Or, what evidence would constitute a failure on the part of a researcher to fulfil the obligation to foster, promote and maintain an approach to the development, conduct and reporting of research based on honesty and integrity? The very breadth and generality of the language used in these statements suggest that the purpose is not their enforcement.

A further example is the proposal not to use the expression research misconduct in the document, but to refer to breaches of the Code. The language of breach is applied better to duties, rules or standards that are drafted with the intent of enforcement so that it can be clear when evidence discloses a breach and when it does not. Casting the substantive document in the form of responsibilities makes this difficult. In common language, responsibilities are either fulfilled or they are not and where they are not, it is common to speak of a failure to fulfil the responsibility rather than a breach. The use of the language betrays a confusion of underlying purposes.

The advocates of an enforcement approach have argued for a national research integrity agency, like that in some other Western nations. There may, however, be a simpler, more politically and fiscally feasible model available.

If the underlying purposes are to protect the reputation of research as a public interest, to prevent waste and misguided work that can follow from relying on irresponsible and inaccurate research and to prevent waste or the risk of waste of public research funds, then the mode of regulation would be more likely to resource the training of researchers, the guidance of institutions in establishing appropriate research environments and the public promotion of responsible and effective research. The response to irresponsible research conduct would be directed at the withdrawal from the public arena of unsupported and inaccurate results, appropriate disclosure of these (e.g. to journal editors and research funding agencies) and appropriate apologies from responsible institutions and researchers supported with undertakings for reform of faulty procedures and practices.

In implementing these purposes, it would not be surprising for the system to give significant authority to both public research funding agencies. This could include, for instance, authority to ensure that institutions seeking access to their funds establish appropriate procedures to ensure responsible research conduct, including sufficient and sustained training of researchers, adequate resources and research facilities and appropriate auditing and reporting of research conduct. Agency authority could also include an entitlement to establish not only whether researchers who seek or have access to research funding have research records free of irresponsibility, but also that eligible institutions did not have current employees with such records.

Access to research funding has been a potent motivator in the institutional establishment of human research ethics committees, both in the United Kingdom, as Adam Hedgecoe (2009) has shown, and in Australia where the NHMRC’s 1985 decision required institutions to establish institutional ethics committees if they wanted access to research funds with which to conduct human research. In both cases, the decisions were followed by a notable increase in the number of institutional research ethics committees.

An approach that actively promotes responsible research practice may be more likely to achieve wider conformity with good practice standards than a focus on identifying, investigating and punishing failures to meet those standards. If so, the first better practice guide would be how to promote responsible conduct of research; it would not be how to identify investigate and respond to poor research conduct. Indeed, responsible institutions could pre-empt any such requirements by unilaterally setting up programs to instruct researchers in responsible conduct, train and embed research practice advisers in strategic research disciplines, reward examples of responsible research that enhance both researcher and institutional reputations and establish a reliable and comprehensive record keeping system of research. This is an argument that Allen and Israel (in press) make in relation to research ethics.

Australia has an opportunity to adopt a constructive and a nationally consistent approach to the active promotion of good research practice. It would be more likely to achieve this with a code that was not constrained by institutional self-interest nor confined by a punitive focus.

References

Allen, G and Israel, M (in press, 2017) Moving beyond Regulatory Compliance: Building Institutional Support for Ethical Reflection in Research. In Iphofen, R and Tolich, M (eds) The SAGE Handbook of Qualitative Research Ethics. London: Sage.

Hedgecoe, A (2009) A Form of Practical Machinery, The Origins of Research Ethics Committees in the UK, 1967–1972, Medical History, 53: 331–350

Contributor
Prof Colin Thomson is one of the Senior Consultants at AHRECS. You can view his biography here and contact him at colin.thomson@ahrecs.com,

This post may be cited as:
Thomson C. (2017, 22 May) Cracking the Code: Is the Revised Australian Code likely to ensure Responsible Conduct of Research? Research Ethics Monthly. Retrieved from: https://ahrecs.com/research-integrity/cracking-code-revised-australian-code-likely-ensure-responsible-conduct-research

Making Indigenous research ethics a compulsory facet of supervisor development and student training1

 

There is an increasing trend in Australian universities to provide professional development for supervisors of higher degree research (HDR) students (Whisker & Kiley, 2014). Concurrently there is also a move toward more structured research development programs for HDR candidates (McGagh et.al., 2016). Education in Indigenous research ethics for both these groups is essential if we are to ensure that research with Indigenous Australian peoples and communities is ethical. Particularly in relation to nonmaleficence and beneficence; key aspects underlined by the Australian Institute of Aboriginal and Torres Strait Islander Studies and the National Health & Medical Research Council guidelines on Indigenous research. Although it is difficult to quantify, given the lack of an explicit research codes for much Indigenous research, even a cursory look at outcomes of major competitive grants schemes suggests that there is considerable research being undertaken in Indigenous communities by both Indigenous and non-Indigenous researchers. Human Research Ethics Committee (HREC) procedures provide both guidance to researchers and a buffer to communities through the mechanism of the Aboriginal and Torres Strait Islander ‘appendix’ which ensures that researchers address the key issues of harm, consent and benefit. However, the HRECs should not have sole responsibility in this area.

This is not to say that HRECs do not have a role in this area, but we suggest that HREC responsibility needs to be part an integrated educative framework of Indigenous research development for both HDR students, their supervisors and indeed any researcher undertaking Indigenous research (Trudgett, 2011, Trudgett et.al., 2016). We suggest that Graduate Research Schools and those responsible for education and ongoing development of supervisors and HDR students need to prioritise this area of research education. In our experience, this work is too often ad hoc and left to Indigenous academics who are, in some cases, called on to provide expert advice without appropriate recognition in terms of being a formal part of supervision teams or being part of their usual academic roles. While there continues to be significant under-representation of Indigenous academics working in Australian universities (Behrendt, et.al., 2012), the need for this advisory work can be frustrating for supervisors seeking advice from a limited pool and even more so, for Indigenous academics who are already burdened by considerable unrecognised work (Page & Asmar, 2008).

On a more positive note there are increasing numbers of more senior Indigenous academics who can contribute to this area of universities work. At our own institution, our team from the Centre for the Advancement of Indigenous Knowledges, regularly provide education for HDR students and their supervisors as part of the UTS Graduate Research School’s structured researcher development program. In the context of the ACOLA Review and the recent Universities Australian draft Indigenous Strategy (Universities Australia, 2016) which indicates that universities should take steps to increase the numbers of Indigenous HDR students, the need for improved capacity in Indigenous research and ethics is clear. It is imperative that Graduate Research Schools and those responsible for research training take steps to actively address this issue. To conclude, universities need to dedicate appropriate resources to the development of supervisors responsible for overseeing the candidature of Indigenous and non-Indigenous postgraduate students undertaking Indigenous research and avoid delegating such responsibility to their existing Indigenous staff without additional resources and acknowledgement.

References

Behrendt, L., Larkin, S., Griew, R., & Kelly, P. (2012). Review of higher education access and outcomes for Aboriginal and Torres Strait Islander People: Final Report. Canberra: Department of Industry, Innovation, Science, Research and Tertiary Education.

McGagh, J, Marsh, H, Western, M, Thomas, P, Hastings, A, Mihailova, M, Wenham, M (2016) Review of Australia’s Research Training System. Report for the Australian Council of Learned Academies, www.acola.org.au.

Page, S. & Asmar, C. (2008) ‘Beneath the teaching iceberg: Exposing the hidden support dimensions of Indigenous academic work.’ Australian Journal of Indigenous Education, Vol 37S, pp. 109-117.

Trudgett, M. (2011). Western places, academic spaces and Indigenous faces: supervising Indigenous Australian postgraduate students. Teaching in Higher Education, 16(4), 389-399.

Trudgett, M., Page, S., & Harrison, N. (2016). Brilliant Minds: A Snapshot of Successful Indigenous Australian Doctoral Students. The Australian Journal of Indigenous Education, 45(1), 70-79.

Universities Australia. (2016). Indigenous Strategy 2017 – 20120, Draft for consultation, November, 2016, circulated to universities, 17/11/16.

Wisker, G., & Kiley, M. (2014). Professional learning: lessons for supervision from doctoral examining. International Journal for Academic Development, 19(2), 125-138.

Contributors
Susan Page – Susan.page@uts.edu.au | CAIK profile
Michelle Trudgett – Michelle.trudgett@uts.edu.au | CAIK profile

Centre for the Advancement of Indigenous Knowledges, University of Technology Sydney. http://www.uts.edu.au/research-and-teaching/our-research/centre-advancement-indigenous-knowledges

This post may be cited as:
Page S andTrudgett M. (2016, 25 November) Making Indigenous research ethics a compulsory facet of supervisor development and student training. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/making-indigenous-research-ethics-compulsory-facet-supervisor-development-student-training

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