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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.

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

In a world of hijacked, clone and zombie publishing, where shouldn’t I publish?3

 

When we talk to research higher degree candidates and early career researchers about publication ethics, one question comes up repeatedly. Indeed, it is a question we are frequently asked by experienced researchers, particularly those who wish to publish in a new field – where should I publish? That’s a difficult question to answer in the abstract so first we would like to remove some distractions from the decisions that need to be made. In this piece, we look at the other side of the coin and explore where researchers should not publish.

Research institutions often provide their staff with incentives to publish in top-ranking journals as determined by impact factor. Publishing in these journals can boost the university’s standing in some international rankings and national research assessment exercises. Consequently, performance indicators, promotion and recruitment criteria, track records for grant assessment and even financial bonuses may be aligned with these outlets.

Good research takes a long time and we should take care where we place our outputs. If we want our papers to be read, we need to look for a journal that reaches our prospective audience. In some fields, this might mean a niche but highly rated journal linked to a particular professional association; in other cases, we seek a journal that is covered by reputable indexes and databases like Medline, PubMed, Scopus or the Web of Science. Only then would a paper be included by subsequent systematic review or meta-analysis, for example.

However, many researchers may find it tough to break into the top 25%, let alone the top 10% of journals. Even if they can, the process can prove lengthy and frustrating as journals use robust peer review processes and may call for repeated and extensive and perhaps even unwarranted revisions. In the face of this, some scholars may come under pressure to publish quickly, particularly if the award of a doctorate or confirmation of the first job is dependent on having something in print. And, for some purposes (including Australian institutional block research funding until quite recently), quantity may trump quality.

There are traps for the unwary who find themselves in this position. Everyone wants to avoid predatory journals and publishers and, yet, not everyone does. Not even some top researchers manage to avoid these outlets according to one study of academic economists (Wallace and Perri, 2016). Researchers, it seems, can be seduced by an invitation from journal editors, an invitation sometimes filled with ‘flattering salutations, claims that they had read the recipient’s papers despite being out of the journals claimed area of study, awkward sentence structure and spelling mistakes, and extremely general topics’ (Moher and Srivastava, 2015).

While many researchers have been duped, publication scammers are not always given a free ride. A few have come under some pressure from legal authorities. In 2016, the Federal Trade Commission (FTC) filed a brief in the US District Court against the OMICS Group and related entities. The brief reveals a little about what is known about these journals. OMICS, for instance, is a Nevada-registered, Hyderabad-based entity that claims to run 700 journals. The FTC alleged that OMICS deliberately misled potential authors by misrepresenting the composition of the editorial board, the process of review, the journal’s impact factor and the fee for publication:

…the academic experts identified by Defendants lack any connection with Defendants’ journals. Further, in many instances, articles submitted for publishing do not undergo standard peer review before publishing. And Defendants’ journals’ impact factors are not calculated by Thomson Reuters, nor are their journals included in PubMed Central. Moreover, Defendants fail to disclose, or disclose adequately, that consumers must pay a publishing fee for each published article. (p.5)

Recently, OMICS has diversified its strategy. In 2016, Canadian journalists reported OMICS had bought at least the trading name of reputable Canadian publishers and appeared to have also picked up their publishing contracts with well-regarded journals. This, it seems, was done so that OMICS could use these names as a front to attract articles to its predatory publishing stable (Puzic, 2016). Some professional associations who found their publishing contracts taken over have declared their intention to break their connection to OMICS.

When assessing which journals to target for your work, you might:

  1. Read recent issues of the journal. Are the papers of a quality you would cite? Can you find evidence of good editorial standards? Would your work fit among the papers published there? What, Macquarie University counsels its staff to consider, is its relevance, reputation, visibility and validity?
  2. Check the standing of the publication’s editors. Are they members of the Committee on Publication Ethics (COPE) or, if their journals are online, the Open Access Scholarly Publishers’ Association (OASPA); predatory publishers are less likely to be members. COPE has also created the Check.Submit.campaign to support authors’ decision-making.
  3. Talk to a research librarian, your peers and mentors about the potential publisher. If you know anyone who is on the Editorial Advisory Board, ask them about the journal at the same time that you seek to establish whether whether the journal might be interested in your work. Some leading academics have found their names on Editorial Advisory Boards of predatory journals and have discovered that it is easier to join these lists than have their name removed.
  4. Read the publisher’s policies and editorial review practices. Are they coherent, do they provide detailed information on submission guidelines and peer review processes? If they guarantee a speedy turnaround, that is often a warning sign. Check whether they impose ‘article processing charges’ (APCs). Then, check again.

Reach out to researchers that have previously been published there to discuss their experiences and impressions.

Not every legitimate journal can extract itself from predatory publishers. Where once respected journals are hijacked by criminal enterprises, they can continue their existence as ‘zombie journals’, trading off the reputation built up in the past but behaving like any other predatory journal. There are other kinds of dishonest practices. Some predatory publishers have established ‘clone journals’ who use the same title as a legitimate journal and reproduce the original journal’s website or make minor changes to the title in an attempt to deceive unwary authors (Prasad, 2017). Hijacked, clone and zombie publishing can turn a glowing recommendation into a trap for the unwitting. Analysis of criminal activities in publishing has taken a little time to catch up with offending patterns. In recent work, Moher and Shamseer (2017) argued that the term predatory journal should be replaced by ‘illegitimate entities’, refuting the idea that such entities were entitled to clothe themselves in the language of the legitimate publication industry.

So, what advice should we give to researchers about being prudent with the treasured fruit of their labours? Until recently, one quick answer might have been to avoid journals on Beall’s List, a list of ‘predatory journals’ that Jeffrey Beall, a US-based librarian, had placed on a ‘blacklist’. The list always had its critics (Naylon, 2017). Variables used by Beall such as open access, fees to publish, locations in low- to medium-income countries, and novel peer review practices are not automatically predictors of a predatory publisher. Nor does the converse necessarily guarantee a publisher is a safe choice. However, whatever its longstanding flaws, Beall’s List is rapidly losing its currency. Earlier this year Beall decided to ‘unpublish’ his list; the list is no longer updated and is only available on cache sites. Institutions seeking a successor to Beall’s List can look towards a commercial provider, Cabells, which has announced its own Blacklist. Anyone using a blacklist should also check journals against a ‘white list’ like the Directory of Open Access Journals or even the old Excellence in Research Australia journal rankings (removed from the research council websites, but still circulated discreetly like a samizdat newsletter among Australian academics).

Unfortunately, unless black and white lists are updated continuously, they can never keep up with changes in the publication industry. Some publishers once regarded as predatory genuinely improve their practices over time. On the other hand, illegitimate practices have also changed over time. Over the last few years, we have seen the movement of organised and unorganised crime into the industry, attracted by the roughly US$100m in fees that Shamseer et al. (2017) estimated (very roughly) that predatory publishers might be obtaining.

So, the quick answer to the question ‘where shouldn’t I publish?’ is that since the demise of Beall’s List, researchers need to engage in critical enquiry and reflection about a potential publisher. This should not come as a shock – the same advice would have been true long before the end of Beall’s List.

In recent weeks, we’ve been including in the Resource Library discussion pieces, papers and strategies that propose how to assess publishers.

These include:

Not the ‘Beall’ and end-all: the death of the blacklist, AOAG Webinar Series (Dr Andy Pleffer & Susan Shrubb | April 2017)

Beyond Beall’s List: Better understanding predatory publishers, Association of College & Research Libraries (Monica Berger and Jill Cirasella | March 2015)

Black lists, white lists and the evidence: exploring the features of ‘predatory’ journals, BioMed Central Blog (David Moher & Larissa Shamseer | March 2017)

Warning: conmen and shameless scholars operate in this area. Times Higher Education (James McCrostie | January 2017)

Blacklists are technically infeasible, practically unreliable and unethical. Period. – LSE Blog (Cameron Neylon | January 2017)

Beware! Academics are getting reeled in by scam journals – UA/AU (Alex Gillis | January 2017)

References

Moher, D. and Shamseer, L. (2017) Black lists, white lists and the evidence: exploring the features of ‘predatory’ journals. BioMed Central Blog 16 Mar 2017. https://blogs.biomedcentral.com/bmcblog/2017/03/16/black-lists-white-lists-and-the-evidence-exploring-the-features-of-predatory-journals/

Moher, D. and Srivastava, A. (2015) You are invited to submit…. BMC Medicine, 13(1), p.180. https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-015-0423-3

Neylon C. (2017) Blacklists are technically infeasible, practically unreliable and unethical. Period. LSE Blog. https://cameronneylon.net/blog/blacklists-are-technically-infeasible-practically-unreliable-and-unethical-period/

Prasad, R. (2017) Predatory journal clones of Current Science spring up. The Hindu, 14 July. http://www.thehindu.com/sci-tech/science/predatory-journal-clones-of-current-science-spring-up/article19277858.ece

Puzic, S. (2016) Offshore firm accused of publishing junk science takes over Canadian journals. CTV News. 28 September. http://www.ctvnews.ca/health/health-headlines/offshore-firm-accused-of-publishing-junk-science-takes-over-canadian-journals-1.3093472?hootPostID=00bc7834da5380548a8b2d58e40c8b29

Shamseer, L, Moher, D., Maduekwe, O., Turner, L., Barbour, V., Burch, R., Clark, J., Galipeau, J., Roberts J. and Shea, B.J. (2017) Potential predatory and legitimate biomedical journals: can you tell the difference? A cross-sectional comparison. BMC Medicine 15:28. https://doi.org/10.1186/s12916-017-0785-9

Wallace, F. and Perri, T. (2016) Economists behaving badly: publications in predatory journals. MPRA Paper No. 73075, posted 15 August. https://mpra.ub.uni-muenchen.de/73075/1/MPRA_paper_73075.pdf

Also see

Examining publishing practices: moving beyond the idea of predatory…
Continuing Steps to Ensuring Credibility of NIH Research: Selecting Journals with…
Illegitimate Journals and How to Stop Them: An Interview with Kelly Cobey and…
Open access, power, and privilege

Contributors
Prof. Mark Israel, senior consultant AHRECS, Mark’s AHRECS bio – mark.israel@ahrecs.com
Dr Gary Allen, senior consultant AHRECS, Gary’s AHRECS bio – gary.allen@ahrecs.com

This post may be cited as:
Israel M & Allen G. (2017, 26 July) In a world of hijacked, clone and zombie publishing, where shouldn’t I publish? Research Ethics Monthly. Retrieved from: https://ahrecs.com/research-integrity/world-hijacked-clone-zombie-publishing-shouldnt-publish

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

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