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Why do we need Category D appointments on HRECs and how should we find suitable people?0

 

Judith C S Redman

The compulsory presence of the Category D members on Australian Human Research Ethics Committees (HRECs) can be controversial. Category D used to be termed ‘minister of religion’ and most HRECs recruited ordained Christian ministers to fill these roles, although at least one of the Monash University HREC Category D members has been a rabbi (recruited by me). People question the need for a ‘religious perspective’ on HRECs, especially on those that regularly look at research concerning issues like abortion, contraception or euthanasia, or stem-cell research where ‘the Church’ is seen to have negative stances. I am a Uniting Church minister and a long-term university chaplain, which makes me a prime target for recruitment to the Category D position on university HRECs. I am currently in my 18th year as a Category D appointment, serving my fourth university. Clearly, it is something I find interesting and rewarding and I would like to offer some comments on the nature of the position.

First, referring to the category as ‘minister of religion’ is misleading, because the role is not to provide a religious perspective per se. ‘Minister of religion’ was included as a category (along with lay woman, lay man and member external to the institution) in the First Report by the NH&MRC Working Party On Ethics in Medical Research published in 1982 (p 20) and incorporated into the first National Statement published in 1983. In the 1999 version of the National Statement, the position was listed as: ‘at least one member who is a minister of religion, or a person who performs a similar role in a community such as an Aboriginal elder’ (NHMRC, 1999, p 16 – emphasis mine), thus hinting that it was not the minister’s religious perspective that was being sought. In fact, even when Australian society was far less multi-faith than it is today, no one clergy-person could provide a representative religious perspective. The 2007 National Statement made the purpose more overt in describing the category as ‘at least one person who performs a pastoral care role in a community, for example, an Aboriginal elder, a minister of religion’ (NHMRC, 2007 p 81). This wording has carried across to the current revision. (NHMRC, 2018 p 87).

What, then, is it that Category D members of HRECs bring to meetings? What is pastoral care? Finding a simple definition is somewhat challenging but Grove (2004, p. 34) defines it as ‘all measures to assist an individual person or a community reach their full potential, success and happiness in coming to a deeper understanding of their own humanness’. Pastoral carers are not therapists, but they do come into contact with human beings at high and low points of their lives. Often, however, they see more every-day lows than those that typically cause people to make appointments with therapists – and very few people will pay a therapist to share joys. They do, however, come to congregational clergy and Aboriginal elders to share the joy of the birth of a child and to mark other rites of passage within the life of their communities. Pastoral carers thus have insights into how people make meaning in their lives that many other people are not privileged to share. They can therefore offer broader perspectives on how participants might respond to some kinds of research than can many other HREC members.

Second, ‘the Church’ does not have a uniform perspective on biomedical ethical issues. While some denominations have specific stances on abortion, contraception, euthanasia, stem-cell research and so on, others do not. In my own denomination, most forms of contraception are widely accepted although some, such as the ‘morning after pill’ would divide members and clergy alike. Abortion, euthanasia and stem-cell research are all controversial, with Uniting Church members and clergy holding a range of opinions very close to the spread found in the wider community. It is therefore not possible to assume that any given Christian minister of religion will be against this kind of research as a matter of principle. This would also be true for pastoral carers from other world religions. Further, it is my experience as someone who has worked in a multicultural and multifaith university environment for several decades that while the things that divide religions are the things we notice most, we have far more in common than things that divide us. A fundamental part of most religions is an attempt to help people to understand what it means to be human, so someone with pastoral care experience from within a religious context can offer valuable insights into the human condition that are not bound by the teachings of her or his religion. They may well, for instance, have supported people making difficult decisions about biomedical ethical issues and have a better insight into whether the researchers have put appropriate measures in place for support of participants.

In addition, ministers of religion are not the only people on HRECs whose perspectives are shaped by religion. I have certainly known people serving in other roles on HRECs whose faith positions affect how they view some of the applications we are considering. The religious perspectives of Category D members are more likely to be overt, but any member of a HREC should declare a conflict of interest if s/he holds a faith/moral position that would not allow her/him to approve particular research no matter how well it complied with the National Statement. It is also quite likely that ministers of religion have studied ethics at a tertiary level as part of their ministry training.

Thus, I would argue that people with experience in providing pastoral care bring a unique and valuable perspective to the deliberations of HRECs, as long as they are selected with a little care. If you are responsible for recruiting members and biomedical research involving abortion, euthanasia, contraception or stem cell research and/or research around human sexuality and sexual orientation come up regularly in your business, you need to address the issues in your recruitment of Category D members. Although members of some religious groups are more likely to have problems with these issues, you cannot predict how a particular pastoral carer might react based on his or her religious group’s official policy. If you are replacing a Category D appointee or recruiting an extra one, the current one may be able to suggest colleagues that s/he thinks might be suitable. If you are setting up a new committee, the Category D appointees on nearby committees might have some ideas about suitable people. Some pastoral carers might even be willing to belong to more than one committee as long as the agendas are not too long and the meeting dates do not clash. In the end, however, you need to inform potential appointees about the kinds of issues you regularly deal with and ask them if they see any problem about their being able to assess these kinds of applications objectively. You also need to ensure that they understand that they are being recruited for their pastoral care experience not to provide a religious perspective. Taking these two steps should see your committee well served by your Category D appointments as they offer their particular perspectives on the applications before you.

We would like to build upon Judith’s excellent post about the pastoral position in future editions with similar commentaries about other positions.  Please contact us on HREC_members@ahrecs.com to discuss.

References

Grove, M. (2004). The Three R’s of Pastoral Care: Relationships, Respect and Responsibility. Pastoral Care in Education, 22(2), 34-38. doi:10.1111/j.0264-3944.2004.00261.x.

National Health and Medical Research Council (Australia) (1982). First Report By NHMRC Working Party on Ethics In Medical Research: Research in Humans. National Health and Medical Research Council, Canberra, ACT.

National Health and Medical Research Council (Australia) (1999). National Statement on Ethical Conduct in Research involving Humans. National Health and Medical Research Council, Canberra, ACT.

National Health and Medical Research Council (Australia) (2007). National Statement on Ethical Conduct in Human Research. National Health and Medical Research Council, Canberra, ACT.

National Health and Medical Research Council (Australia) (2018). National Statement on Ethical Conduct in Human Research, updated 2018. National Health and Medical Research Council, Canberra, ACT.

Contributor
Rev Dr Judith C S Redman, Chaplaincy Coordinator, Charles Sturt and La Trobe Universities, Albury-Wodonga Campuses | jredman@csu.edu.au

This post may be cited as:
Redman, JCS (27 March 2019) Why do we need Category D appointments on HRECs and how should we find suitable people? Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/why-do-we-need-category-d-appointments-on-hrecs-and-how-should-we-find-suitable-people

How do we ‘do’ consent?0

 

This blog post expands on ideas from our recent publication: McWhirter, R. E., & Eckstein, L. (2018). Moving Forward on Consent Practices in Australia. Journal of Bioethical Inquiry, 1-15.

Recently I participated in a research study. With the research nurse sitting opposite me expectantly, I moved quickly to sign in the appropriate place.

Hang on a minute. I’m a researcher, and an HREC member. I’ve published papers on informed consent, for goodness’ sake. I know better than this. Dutifully, I went back to the information sheet to read it properly.

After a couple of lines, I got bored and started scanning for key phrases. What will they do with my data? Which HREC approved this? Am I signing myself into eternal servitude?

Oh, who am I kidding, I thought. I’ve already made my decision. So, I just signed it, the research nurse smiled, and we got on with it.

Research suggests that I am not alone in my reaction to consent forms. They are boring, sometimes bordering on impenetrable. HRECs blame researchers for not writing in plain English. Researchers blame HRECs for being too inflexible and demanding a ridiculously long list of things to be included in a rigid format. There’s probably some truth on both sides, as well as some misunderstanding. And so, we end up with long, boring and ultimately unhelpful consent documents.

This is not to suggest that everyone is doing consent badly. There are lots of examples of research groups working with communities – whose members are usually potentially vulnerable in some way – to develop consent materials or processes that actually meet the needs of participants. Sometimes the solutions are technological– involving multimedia tools to overcome literacy or language barriers – and sometimes structural – such as by undertaking consent over several visits, so that individuals can decline to participate either by saying no or by avoiding the researchers, which can be an important option in communities where this is considered a more culturally acceptable method for refusal.

So, consent doesn’t have to be boring.

But what of the other problem indicated by my experience above? I had already made up my mind to participate before I’d been given the information sheet. Those with experience in study recruitment will know that I’m not unusual in this respect either. Depending on how the recruitment is undertaken, first contact might be a phone call, an email or letter, or a face to face conversation. In most cases, there will be some kind of blurb that precedes a participant’s reading of the consent documents and this is largely what people are basing their decision on.

These initial contacts are difficult to standardize (and it’s not necessarily desirable to do so) and difficult for HRECs to review, especially if they are verbal. A lot depends upon the character of the person doing the recruiting (usually a research nurse or research assistant rather than a principal investigator).

For one study in remote Aboriginal communities that I was involved in, I undertook several months of community consultation prior to commencing recruitment. I worked with community members to develop the study design and consent materials, employed local research assistants, and was helped enormously by senior women from each community. The relationships we developed meant that the study better met the needs of the communities, was more ethically sound (complying with both the National Statement and Values and Ethics) and resulted in a wider range of benefits than would otherwise have arisen.

These relationships also created trust between us. And that no doubt had an effect on our recruitment. The women liked me and wanted to help me. I had the support of influential elders. And by the time we got to use our carefully designed audio books, with information recorded in multiple dialects and with culturally relevant illustrations, most participants had already heard about the study, either from the community meetings during the consultation phase or through word of mouth. Although I stressed that participation was voluntary, and they were welcome to say no, everyone I invited agreed to participate.

So, what was the point of informed consent here? Well, it’s still polite to ask. The process of consultation that preceded it was effectively a form of community consent. And although individual decisions were probably influenced by their relationship with me and other study team members, these participants arguably had a greater understanding of the study than many participants in studies using more traditional methods.

I’m not sure there is a perfect way to ‘do’ consent. But it helps to be aware that the process is wider than just the consent documents. Providing training and ongoing team-based reflection for recruiters would help to address concerns over the quality of the less formal elements of consent. And it would be useful for HRECs to recognize the value of community consultation and consumer engagement in the study design phase, and to be open to non-traditional approaches to undertaking consent, rather than focusing unduly on the precise wording of consent forms.

We can’t ‘protect’ participants from researchers through mandating lists of information to be conveyed through formal documents, but we can encourage a culture of ethical research that better addresses community interests by reflecting on what we’re actually doing when we ‘do’ consent.

Contributor
Rebekah McWhirter
Centre for Law and Genetics, Faculty of Law, University of Tasmania
http://www.utas.edu.au/profiles/staff/law/rebekah-mcwhirter

This post may be cited as:
McWhirter R. (26  August 2018) How do we ‘do’ consent?. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/how-do-we-do-consent

We invite debate on issues raised by items we publish. However, we will only publish debate about the issues that the items raise and expect that all contributors model ethical and respectful practice.

What’s at risk? Who’s responsible? Moving beyond the physical, the immediate, the proximate, and the individual0

 

Building the Conversation

This month’s addition to the Building the Conversation series reflects upon how we approach risks beyond those that are physical, harm people other than a project’s participants and harms that are not immediate.

To some extent, when researchers reflect upon those harms associated with a project, they may well limit their assessment of risk to the here and now and to identifiable individuals. In addition, for projects in the medical sciences, those risks were long understood as predominantly physical in the form of injury, infection or disability and related to direct participants (e.g. persons who received an experimental pharmacological agent). This limited vision is not particularly surprising. One of the perverse consequences of requiring researchers to reflect on whether the potential benefits of research justify risk to participants is that some researchers are dissuaded from looking too carefully for risks and therefore avoid developing strategies for minimising these risks and mitigating possible harms. Even more perversely, this reluctance can trigger in human research ethics committees an unrealistic level of risk aversion.

It is vital that we remember that it is primarily the responsibility of researchers to identify, gauge and weigh the risk. Research ethics review bodies have the role of providing feedback to researchers to facilitate projects, not catch out researchers and chastise them for neglecting a risk. This is especially true if we do not have resource material to assist researchers with regard to this wider focus.

We need to improve our understanding of the complexity of risks, extending our vision to look beyond the physical, the immediate, the proximate, and the individual risks. At the same time, we need to review our understanding of on whom the responsibility for the identification, mitigation ad management of all of these risks should fall.

In recent decades, national human research ethics frameworks, such as the Australian National Statement on Ethical Conduct in Human Research (National Statement) (NHMRC 2007a) have augmented their original interest in physical harm with a much broader set of psychological, legal, economic and social harms. Documents such as the Australian Code for the Responsible Conduct of Research (NHMRC 2007b) cast this net wider still to include societal and environmental risks. However, the likelihood of incidence, the significance of the harm and the timing of such harms can be harder to predict, quantify and mitigate.

We are fuelling the potential for an adversarial climate (Israel et al., 2016) if we fail to provide researchers and our research ethics reviewers with guidance on how to approach such matters.

Human research ethics committees, guided by the frameworks in which they function, focus on immediate risks directly to the participants in a project. For example, the National Statement requires committees to be satisfied that “the likely benefit of the research must justify any risks or discomfort to participants.” (NHMRC, 2007, 10). Committees can feel less equipped to tackle risks that can affect participants after the active phase of a project, such as harms to the reputation and standing of a group that can come from the research output that is distributed long after data collection and perhaps years after the research ethics review.

Harm can also impact upon populations and social/professional/community groups much wider than the actual participants. For, example, research into the academic performance of children from schools in a low socio-economic area if reported insensitively by researchers or, indeed by the media, can further stigmatise the kids, and harm the reputation of the schools and teachers. Again, work on the informal income of members of marginalised communities might be used subsequently by government to target tax avoidance by the already vulnerable. Lastly, research on the attitudes of residents in coastal communities to climate change and rising sea levels can detrimentally effect the value of surrounding land. Indeed, some review processes require researchers to consider the possibility of adverse findings (both medical and non-medical in nature). Although the National Statement, (NHMRC, 2007 p.13), recognises risks of this kind, it leaves unclear whose responsibility they are.

Focussing on the rights of individuals from a Western liberal democratic perspective is unlikely to be helpful in other contexts, such as an Aboriginal and Torres Strait Islander community, in a cultural context where a Confucian approach would be more appropriate (Katyal, 2011), or even in some organisational settings where accountability is partly achieved through openness to external scrutiny in the form of research and evaluation. As a result, there have also been prompts to consider risks to identifiable third parties, groups, institutions, communities (Weijer et al., 1999). Values and Ethics and the Guidelines for Ethical Research in Australian Indigenous Studies (GERAIS) do recognise such matters might be considered by some potential participant pools on a collective basis and perhaps with an knowledge of a history of research abuse and exploitation of their communities and this attention to collective interests can be echoed in other work on research ethics and Indigenous peoples around the world (Israel, 2015).

This is perhaps one of the reasons why some minorities have produced their own research ethics guidance documents (for examples, see Hudson et al. (2010), Nordling (2017) and Islamic Council of Victoria (2017)). The value of this kind of guidan this on some for the moments that it clarifies that it is on researchers that the important responsibility lies to foresee, mitigate and manage these risks.

Another example of deleterious impacts from research that might not be immediately obvious to researchers, research ethics reviewers or research office staff arises in the category of ‘dual use’ research (Miller and Selgelid, 2007). This where a technique, technology or an apparently non-military discovery can be used for military or terrorist purposes – sometimes with devastating effect. Initially, the concern of biomedical scientists, the issue has also troubled anthropologists, geographers, sociologists, political scientists and international relations experts in the face of overt or covert funding by military or intelligence agencies (Israel, 2015). One of the growing challenges for a significant proportion of such work (e.g. quantum computing, computer security/intrusion/hacking, smart materials, computer vision and energy storage) is the work will not typically require research ethics or any other form of independent review. The existing model of human research ethics review is initially attractive as a response, but some reflection will quickly show that ethics committees are not likely to possess the expertise/information to identify the dual use and the work may be occurring in disciplines that have not built their capacity to think through the ethics of working with human participants.

Australia has a strengthened export control framework with regard to security classification, Defence Department permits/approvals and other requirements (e.g. data security). Many Australian universities have established dedicated teams and processes for this particular area of concern. It remains an area of community concern (see Hamilton and Joske, 2017). Such controls involve balancing academic freedom, a commitment to open science and the value of scientific discovery against (inter)national security, trade and diplomatic interests. Such a balancing exercise is plainly beyond the capacity required for human research ethics review, so that the responsibility needs to rely on another mechanism.

The implications of all of this are not trivial. This all requires a change in thinking for researchers, institutions, funding bodies, learned academies and regulators. Our attention to the potential harms from a project needs to encapsulate research outputs, impacts upon communities, persons who were not direct participants in the project as well as national interests. At the same time, the consideration of a project vis-à-vis the ethical principle of research merit needs to include broader societal benefits and contributions to knowledge that might also involve a much wider group and a longer timeframe than the ones to which we are accustomed. However, in order to reach a more sophisticated analysis of the balance between potential harms and benefits, we need to more clearly allocate responsibility for such risks and devise mechanisms that reassure the community that these responsibilities have been fulfilled.

In our view, merely widening the scope of the responsibilities of human research ethics committees to address all these risks could not only exacerbate the propensity for risk aversion, but could also distort their important focus on the welfare of research participants. The current review system needs to find ways of working constructively with other processes that build the capacity of researchers and their institutions to work with these broader risks and benefits.

Institutions must have resource materials for researchers and research ethics reviewers that have the primary objective of resourcing reflective practice and building expertise in risk assessment and mitigation. Researchers must recognise these matters as their primary responsibility and research ethics reviewers must focus upon facilitation not enforcing compliance. We have written about how institutions can implement such an approach (Israel and Allen, in press).

In short, we cannot afford to ignore these challenges. Instead, we should take innovation seriously and seek constructive solutions.

References

Allen, G. and Israel, M. (in press, 2018) 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.

Hamilton, C. and Joske, A. (2017) Australian taxes may help finance Chinese military capability. The Australian. http://www.theaustralian.com.au/news/inquirer/australian-taxes-may-help-finance-chinese-military-capability/news-story/6aa9780c6a907b24993d006ef25f9654 [accessed 31 December 2017).

Hudson, M., Milne, M., Reynolds, P., Russell, K. and Smith B. (2010) Te Ara Tika. Guidelines for Māori Research Ethics: A Framework for Researchers and Ethics Committee Members. http://www.hrc.govt.nz/sites/default/files/Te%20Ara%20Tika%20Guidelines%20for%20Maori%20Research%20Ethics.pdf (accessed 29 December 2017).

Islamic Council of Victoria (2017) ICV Guidelines for Muslim Community-University Research Partnerships. http://www.icv.org.au/new/wp-content/uploads/2017/09/ICV-Community-University-Partnership-Guidelines-Sept-2017.pdf (accessed 29 December 2017)

Israel, M. (2015) Research Ethics and Integrity for Social Scientists: Beyond Regulatory Compliance. London: Sage.

Israel, M., Allen, G. and Thomson, C. (2016) Australian Research Ethics Governance: Plotting the Demise of the Adversarial Culture. In van den Hoonaard, W. and Hamilton, A. (eds) The Ethics Rupture: Exploring Alternatives to Formal Research-Ethics Review. Toronto: University of Toronto Press. pp 285-316. http://www.utppublishing.com/The-Ethics-Rupture-Exploring-Alternatives-to-Formal-Research-Ethics-Review.html

Katyal, K.R. (2011) Gate-keeping and the ambiguities in the nature of ‘informed consent’ in Confucian societies. International Journal of Research & Method in Education 34(2): 147-159.

Miller, S. and Selgelid, M. (2007) Ethical and philosophical consideration of the dual use dilemma in the biological sciences. Science and Engineering Ethics 13: 523-580.

NHMRC (2007a) National Statement on Ethical Conduct in Human Research. http://www.nhmrc.gov.au/guidelines-publications/e72 (accessed 29 December 2017).

NHMRC (2007b) Australian Code for the Responsible Conduct of Research. http://www.nhmrc.gov.au/guidelines-publications/r39 (accessed 29 December 2017).

Nordling, L. (2017) San people of Africa draft code of ethics for researchers. Science, March 17. http://www.sciencemag.org/news/2017/03/san-people-africa-draft-code-ethics-researchers (accessed 29 December 2017).

Weijer, C., Goldsand, G. and Emanuel, E.J. (1999) Protecting communities in research: Current guidelines and limits of extrapolation. Nature Genetics 23: 275-280.

Contributors
Dr Gary Allen
Senior consultant | AHRECS | Gary’s AHRECS biogary.allen@ahrecs.com

Prof. Mark Israel
Senior consultant | AHRECS | Mark’s AHRECS biomark.israel@ahrecs.com

This post may be cited as:
Allen G. and Israel M. (2018, 1 February 2018) What’s at risk? Who’s responsible? Moving beyond the physical, the immediate, the proximate, and the individual. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/whats-risk-whos-responsible-moving-beyond-physical-immediate-proximate-individual

A Model for the Participation of Indigenous Children and Young People in Research0

 

Following my September 2017 piece: Ethics and the Participation of Indigenous Children and Young People in Research, this article briefly overviews the research model I developed in my PhD. The model is based on a children’s rights-based approach (CRBA) to research informed by Indigenous research methodologies. It combines Laura Lundy’s[1] analysis of Article 12 of the Convention on the Rights of the Child (CRC) with aspects of Indigenous research methodologies articulated by Ray (Indigenous convergence methodology)[2] and Nakata (Indigenous standpoint theory).[3] The field research methods sought to engage with children and young people in a culturally appropriate and child friendly way by using Bessarab and Ng’andu’s[4] ‘yarning’ approach, as well as a range of other child friendly and play based methods such as drawing, modelling with playdough, as well as photography and peer-to-peer video interviewing using iPads[5].

Lundy’s diagram below highlights the interpretation of Article 12 of the CRC adopted in the research. This interpretation emphasises that Article 12 requires governments to ensure children and young people not only have the opportunity to voice their views about matters affecting them, but that their views are taken into consideration and influence the decisions that are made.

Lundy’s Conceptualisation of Article 12[6]

The child rights-based model used prioritised child-centred play in the research process and engaged with children, rather than doing research on or about children[7]. Some of these interactions are depicted below in the photographs.

10-Year-Old Child Modelling Something that is Important to Him—‘My Family’[8]

10-Year-Old Child Modelling Something that is Important to Him—‘I Like Toys, and Robots … and Dreamtime and Culture Dance’[9]

Experimental Photography, Testing the Functionality of the iPads [10]

Making an iPad Video [11]

Taking part in social research can expose Indigenous children and young people to varying degrees of risk however ‘the line between gate-keeping intended for the protection of participants and their communities and the risk of sliding into paternalism is a thin one.’[12] Research that is carried out in an ethically robust, age appropriate and culturally sensitive way can present avenues for Indigenous children and young people to express their views and have these views taken into consideration in accordance with Article 12 of the CRC.

This research suggests Indigenous children and young people are ready, willing and able to voice their perspectives about matters affecting them, if given the opportunity in appropriate circumstances and in an appropriate setting. The findings of this research debunk conceptualisations of Indigenous children and young people as passive and vulnerable. The implications of viewing and defining Indigenous children and young people in this way limits their civic participation and reduces opportunities for their voice to be heard about matters affecting them.

A children’s rights-based approach to research positions children and young people as empowered co-researchers, with expertise and valuable perspectives capable of leading and informing the research process. It is an approach which engages children and young people in research in a collaborative way that fulfils, promotes and protects a range of rights provided for by the CRC, in particular, their rights to participate in decision making processes.

For more information about the research model see 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 76.

In 2018 Routledge is publishing a book about this PhD research.

References

Barker, John and Susie Weller, ‘“Is It Fun?” Developing Children Centred Research Methods’ (2003) 23(1/2) International Journal of Sociology and Social Policy 33.

Bat, Melodie et al, ‘Ethical Moves: Innovation in Qualitative Research: An Example of an Ethical and Effective Cross-Cultural Research Methodology Using Video’ (Paper presented at the AARE Annual Conference, Canberra, 2009);

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

Coram, Stella, ‘Rethinking Indigenous Research Approval: The Perspective of a “Stranger”’ (2011) 11(2) Qualitative Research Journal 38.

Kral, Inge (2010) ‘Plugged In: Remote Australian Indigenous Youth and Digital Culture’ (Working Paper No 69/2010, Centre for Aboriginal Economic Policy Research, May 2010). http://caepr.anu.edu.au/Publications/WP/2010WP69.php

Lundy, Laura, ‘“Voice” Is Not Enough: Conceptualising Article 12 of the United Nations Convention on the Rights of the Child’ (2007) 33 British Educational Research Journal 927.

Nakata, Martin, Disciplining the Savages: Savaging the Disciplines (Aboriginal Studies Press, 2007), chapter 11.

Ray, Lana, ‘Deciphering the “Indigenous” in Indigenous Methodologies’ (2012) 8(1) AlterNative: An International Journal of Indigenous Peoples 85, 88, 88. See also Lester-Irabinna Rigney, ‘Indigenist Research and Aboriginal Australia’ in Julian Kunnie and Nomalungelo Ivy Goduka (eds), Indigenous Peoples’ Wisdom and Power: Affirming Our Knowledge Through Narratives (Ashgate Publishing, 2006) 32.

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

This post may be cited as:
Doel-Mackaway H. (2017, 20 October 2017) A Model for the Participation of Indigenous Children and Young People in Research Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/model-participation-indigenous-children-young-people-research

Footnotes

[1]Laura Lundy, ‘“Voice” Is Not Enough: Conceptualising Article 12 of the United Nations Convention on the Rights of the Child’ (2007) 33 British Educational Research Journal 927.
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[2]Lana Ray, ‘Deciphering the “Indigenous” in Indigenous Methodologies’ (2012) 8(1) AlterNative: An International Journal of Indigenous Peoples 85, 88, 88. See also Lester-Irabinna Rigney, ‘Indigenist Research and Aboriginal Australia’ in Julian Kunnie and Nomalungelo Ivy Goduka (eds), Indigenous Peoples’ Wisdom and Power: Affirming Our Knowledge Through Narratives (Ashgate Publishing, 2006) 32.
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[3]Martin Nakata, Disciplining the Savages: Savaging the Disciplines (Aboriginal Studies Press, 2007), chapter 11
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[4]Dawn Bessarab and Bridget Ng’andu, ‘Yarning about Yarning as a Legitimate Method in Indigenous Research’ (2010) 3(1) International Journal of Critical Indigenous Studies 37.
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[5]Melodie Bat et al, ‘Ethical Moves: Innovation in Qualitative Research: An Example of an Ethical and Effective Cross-Cultural Research Methodology Using Video’ (Paper presented at the AARE Annual Conference, Canberra, 2009); Inge Kral, ‘Plugged In: Remote Australian Indigenous Youth and Digital Culture’ (Working Paper No 69/2010, Centre for Aboriginal Economic Policy Research, May 2010).
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[6] Laura Lundy, ‘“Voice” is Not Enough: Conceptualising Article 12 of the United Nations Convention on the Rights of the Child’ (2007) 33(6) British Educational Research Journal 927, 932
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[7]John Barker and Susie Weller, ‘“Is It Fun?” Developing Children Centred Research Methods’ (2003) 23(1/2) International Journal of Sociology and Social Policy 33, 33.
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[8]10-year-old male, Primary Class Group Discussion, Field Research Session 1 (of 4) (Northern Territory, 13 May 2014).
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[9] 10-year-old male, Primary Class Group Discussion, Field Research Session 1 (of 4) (Northern Territory, 13 May 2014).
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[10]14-year-old male, Secondary Class Group Discussion, Field Research Session 3 (of 4) (Northern Territory, 20 May 2014).
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[11] 10-year-old male, Primary Class Group Discussion, Field Research Session 1 (of 4) (Northern Territory, 13 May 2014
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[12]Stella Coram, ‘Rethinking Indigenous Research Approval: The Perspective of a “Stranger”’ (2011) 11(2) Qualitative Research Journal 38, 45.

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