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Ethics and the Participation of Indigenous Children and Young People in Research0

 

Indigenous children and young people’s participation in social research raises a range of ethical issues that researchers and participants must grapple with prior to and throughout the research process. These issues include for example, matters to do with protocols for seeking consent, ensuring the research process is culturally respectful and age appropriate, whether the research environment and methods used are child friendly and participants can freely express their views, and ensuring the research endeavour is mutually beneficial.

In Australia, all research involving Indigenous children and young people must be guided by, and adhere to the principles articulated in the National Statement on Ethical Conduct in Human Research (‘National Statement’), particularly chapter 4.2 of that Statement. If the research is health related it must comply with the National Health and Medical Research Council’s Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research (‘NHMRC Values and Ethics Guidelines’). These documents instruct researchers about how to undertake research in an ethically sound manner, and the principles they contain are fundamental to the manner in which Australian ethics committees assess human research applications. Additionally, the Guidelines for Ethical Research in Australian Indigenous Studies (‘AIATSIS Guidelines’) are particularly instructive and helpful and are becoming more widely used by researchers and ethics committees alike.

There is a gap however, in relation to a comprehensive ethical framework for the involvement of Indigenous children and young people in social research. The National Statement communicates the ethical parameters for the involvement of children in research; and the NHMRC Values and Ethics Guidelines and the AIATSIS Guidelines set out a framework for the involvement of Indigenous people in research. The National Statement specifically refers to research relating to children and young people, but does not mention research relating to Indigenous children and young people; and there is no mention of children or young people in either the NHMRC Values and Ethics Guidelines nor the AIATSIS Guidelines. Thus, in Australia there is no single overarching ethical framework that specifically pertains to the involvement of Indigenous children and young people in research. Read together however, these three documents provide a firm basis upon which to develop and assess the breadth of ethical considerations regarding the involvement of Indigenous children and young people in research, particularly when read in conjunction with the Convention on the Rights of the Child (CRC) and the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP).

There is much to say about the CRC and the UNDRIP in relation to Indigenous children and young people’s participation in research. All research endeavours involving children and young people must uphold the comprehensive body of children’s rights set out in the CRC. These rights are numerous, therefore the task of ensuring compliance with the CRC for child related research may at first instance appear overwhelming for researchers. One vital provision in the CRC is worthy of focused attention. This is the principle articulated in article 12—children’s right to participate in ‘all matters affecting’ them. This is an instructive and appropriate starting point for researchers to base their considerations of how a research process can adhere to children’s rights principles, and in doing so create a child friendly, culturally respectful and age appropriate research environment that reduces risks participants may experience as a result of taking part in the research. Article 12 of the CRC provides that:

States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.

Article 12 aligns well with the ethical considerations specific to children and young people outlined in chapter 4.2 of the National Statement. Article 12 is widely accepted as the ‘lynchpin’ of the CRC, and a foundational right upon which other rights depend and emerge. The Committee responsible for overseeing the global implementation of the CRC makes this clear when they said article 12 ‘establishes not only a right in itself, but should also be considered in the interpretation and implementation of all other rights.’

The language of this provision is strong. Note the use of compelling words such as ‘shall assure’ emphasising children’s right to free expression, and the all-encompassing subject matter to which the provision applies, namely to ‘all matters affecting’ them. These words are emphatic and when they came into force this drastically altered the pre-CRC, and post CRC, rights framework for children globally.

Involving Indigenous children and young people in research processes, particularly by non-Indigenous researchers, must be carried out in accordance with national guidelines, and in a way that upholds participant’s rights as children in accordance with the CRC, as well as their rights as Indigenous peoples in line with the UNDRIP.

In the absence of a comprehensive and unified ethical framework for engaging Indigenous children and young people in research I developed a model and detailed this in my PhD as well as in the Monash University Law Review. This model is a child rights-based approach informed by Indigenous research methodologies that uses child friendly and culturally sensitive research methods: yarning and peer-to-peer video interviewing to engage children and young people in research. This model is based on national ethics guidelines, the provisions set out in the CRC and UNDRIP, and draws on current scholarship in the area. The development of this model contributes to enhancing the ethical framework that regulates and guides the participation of Indigenous children and young people in social research.

References

Australian Institute of Aboriginal and Torres Strait Islander Studies, Guidelines for Ethical Research in Australian Indigenous Studies (2nd revised ed, 2012)

Bessarab, Dawn and Bridget Ng’andu, ‘Yarning About Yarning as a Legitimate Method in Indigenous Research’ (2010) 3(1) Journal of Critical Indigenous Studies 37

Convention on the Rights of the Child opened for signature 20 November 1989, 44 UNTS 25 (entered into force 2 September 1990)

Doel-Mackaway, Holly, ‘“I think it’s Okay … But it’s Racist, it’s Bad Racism”: Aboriginal Children and Young People’s Views about the Intervention’ (2017) 43(1) Monash University Law Review (forthcoming Sept, 2017)

Freeman, Michael, ‘Whither Children: Protection, Participation, Autonomy?’ (1994) 22(3) Manitoba Law Journal 307

National Health and Medical Research Council, the Australian Research Council and the Australian Vice-Chancellors’ Committee, ‘National Statement on Ethical Conduct in Human Research’ (2007, updated December 2013)

National Health and Medical Research Council, Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research (Commonwealth of Australia, 2003)

UN Committee on the Rights of the Child, General Comment No 12, ‘The Right of the Child to be Heard,’ UN Doc CRC/C/GC/12 (1 July 2009)

United Nations Declaration on the Rights of Indigenous Peoples, GA Res 61/295, UN GAOR, 61st sess, 107th plen mtg, Supp No 49, UN Doc A/RES/61/295 (13 September 2007)

Contributor
Dr Holly Doel-Mackaway | Lecturer | Macquarie Law School | Dr Doel-Mackaway’s Macquarie staff pageholly.doel-mackaway@mq.edu.au

This post may be cited as:
Doel-Mackaway H. (2017, 21 September 2017) Ethics and the Participation of Indigenous Children and Young People in Research Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/ethics-participation-indigenous-children-young-people-research

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

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