ACN - 101321555 Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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Research Ethics MonthlyISSN 2206-2483

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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

“More what you’d call guidelines”0

 

In a notorious scene from Pirates of the Caribbean: The Curse of the Black Pearl, Captain Barbarossa refers to the Pirate’s Code cynically as ‘what you’d call guidelines’ suggesting that conformity is merely a matter of choice:

Elizabeth: Wait! You have to take me to shore. According to the Code of the Order of the Brethren…

Captain Barbarossa: First, your return to shore was not part of our negotiations nor our agreement so I must do nothing. And secondly, you must be a pirate for the Pirate’s Code to apply and you’re not. And thirdly, the Code is more what you’d call ‘guidelines’ than actual rules. Welcome aboard the Black Pearl, Miss Turner.

Recently, some evidence has emerged that the same observation could be made about another set of guidelines, namely, those relating to the ethics review and conduct of human research in Australia: the National Statement on Ethical Conduct in Human Research issued by the National Health and Medical Research Council, the Australian Research Council and Universities Australia in 2007 and modified to the current version of May 2015. These guidelines set out the principles and processes for ethics review by human research ethics committees (HRECs) and conduct of research in which people are participants. The guidelines also set out requirements for the establishment, membership and operation of HRECs and assign obligations to institutions to see that these are followed. Since 2001, the NHMRC has established and maintained a register on which institutions list their HRECs and agree to operate them according to the National Statement.

Annually, these institutions provide to the NHMRC, on request, reports on the conduct of the HRECs they have established. It is these reports, covering 2014, 2015 and 2016 that provide revealing evidence about the extent to which HRECs and institutions in fact conform to the National Statement.

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ACTIVITY

‘When an institution has established an HREC, the institution is responsible for ensuring that…

  • review of research proposal is thorough;
  • review processes and procedures are expeditious;
  • the workload of an HREC does not compromise the quality or timeliness of the ethical review;’ (National Statement 5.1.28 (c), (d) & (i))

Some reasons for these guidelines are that ensuring an adequate workload maintains review skills and that avoiding an excessive workload weakens and prolongs reviews.

Evidence:

In 2014, of the 216 HRECs that reported, 11 did not review any proposals and 59 met between 1 to 5 times and 41 HRECs considered not more than 10 proposals.

In 2015, of the 212 HRECs that reported, 10 did not review any proposals and 54 met between 1 to 5 times, and 42 HRECs considered not more than 10 new proposals.

In 2016, of the 210 HRECs that reported, 15 did not review any proposals and 50 met not more than 1 to 5 times and 42 HRECs considered not more than 10 new proposals.

The published data support the conclusion that in each of the last three years about 5% of the HRECs did not review any proposals and about 20% did not review more than 10 new proposals. What would be the effect of such light workloads on the review expertise of HREC members?

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TRAINING

One other means by which committees can maintain their review skills is to undertake regular continuing education or training. The National Statement contains two relevant guidelines that recognise this:

‘where an institution has established an HREC, the institution is responsible for ensuring that… (b) members undertake: (ii) continuing education;’ (5.1.28 (b)(ii)), and

‘…each member of a review body should: …(c) attend continuing education or training programs in research ethics at least every three years.’ (5.2.3 (c)).

Evidence:

In 2016, 161 of 210 HRECs reported that ‘1 or more’ members had attended training during the year.

In 2015, 185 of the 212 HRECs reported that their institutions made opportunities for training available to members, but only 160 reported that 1 or more members had attended relevant training during the year.

In 2014, although 179 of the 217 HRECs indicted that their responsible institution provided opportunities for members to attend training, only 149 of the committees reported that 1 or more members had attended relevant training during the year.

The data published by the NHMRC does not allow us to identify whether the same HRECs failed to take advantage of training possibilities in different years nor to work out what kinds of institutions were more or less likely to ensure professional development of committee members. Nevertheless, in each of these years, between 30 and 40 HRECs undertook no training at all and the data for those that did could mean that not more than one member attended one training opportunity in that year.

While some HRECs may be investing in the professional development of their members, it is difficult to conclude that the requirements are being taken seriously across the sector.

Indeed, it is doubtful that the sector as a whole is engaging with capacity building of HREC members. Since 2008, the NHMRC has not devoted any resources to training of HRECs, in contrast with its counterparts in the United Kingdom. Canada and the United States. The provision of such professional development as is available has fallen to voluntary national gatherings, such as the Australasian Ethics Network or to commercial providers.

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MEMBERSHIP

There is a minimum membership for HRECs of eight constituted by specified categories, namely,

  • a chair,
  • at least two community members,
  • a member with experience in counselling or treatment of people,
  • a person who performs a community pastoral role
  • a lawyer
  • at least two researchers. (National Statement 5.1.30)

The specification relates to HREC decision-making, as the guidelines provide that HREC decisions ‘must be informed by an exchange of opinions from each of those who constitute the minimum membership…’

Evidence:

In the 2016 year, 16 of the 210 HRECs reported that they did not have the minimum membership during the year.

In the 2015 year, 42 of the 212 HRECs reported during the year that they made decisions on proposals when there was a vacancy in their membership, conduct that the report noted as being ‘contrary to the National Statement’.

In the 2014 year, 34 of the 216 HRECs reported that they had continued meeting when there was a vacancy in their membership, again noted in the report as being ‘contrary to the National Statement’.

Accordingly, there were numerous decisions – it is impossible to calculate how many – made by HRECs during each of the last three years that lacked the range of input that the guidelines require. Further, as the reports in 2014 and 2015 note, such decision-making is contrary to the National Statement and, in turn, a failure by the responsible institution to fulfil its responsibility to ‘see that any human research for which they are responsible is… ethically reviewed and monitor in accordance with this National Statement.’ (National Statement 5.1.1(b)).

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GENDER BALANCE

One other guideline about membership provides that, ‘as far as possible, there should be equal numbers of men and women’ (National Statement 5.1.29(a)).

Evidence:

In the 2016 report, it was stated that because ‘It is recognised that this may be difficult to attain’, the ‘NHMRC considered instances in which there was at least an 80:20 gender imbalance as significant and requiring attention.’ Only 5 of the 210 HRECs reported such an imbalance. No data were reported of the number of HRECs in which there was a lesser gender imbalance.

In the 2015 report, the same statements appear and only 3 of the 212 HRECs reported an imbalance of 80:20 or more.

In the 2014 report, that statement does not appear and 24 of the 216 HRECs are reported to have ‘less than a 70:30 gender balance in either direction.’

Accordingly, gender imbalances of anything less than 1 in 5 are not regarded as in need of attention, an interpretation of the guideline that provides very little incentive to correct imbalances that, in many other contexts in 2018, would be regarded as unacceptable. Were the sector taking gender seriously in HREC membership, it would be far better to create more meaningful targets and, if necessary, to phase these in over time. It would also be sensible to track where gender imbalance lies within committee membership and compare that to broader patterns within the host institutions. For example, if the small number of female academics on a committee reflected a broader problem in an institution, the latter may need to be addressed first rather than placing an increased burden on a small number of more senior female academics.

Year Reviewed applications Complaints about research Complaints about review
2007 10777 138 49
2008 21087 96 19
2009 22306 100 11
2010 23696 121 21
2011 25022 n/a n/a
2012 26257 161 19
2013 24882 145 20
2014 20892 226 58
2015 18768 229 34
2016 18039 237 37

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IMPLICATIONS

Does any of this matter? If so, why: do deficiencies in the processes by which HRECs reach their conclusions and decisions contribute to more of those decisions being inappropriate or unacceptable? Trends in complaints data may be some indication, and these data, available from 2007 to the current year (except 2011), tabulated below, do show some increase in both kinds of complaints. However, it is notoriously difficult to generate reliable conclusions from complaints data.

Implications for NHMRC Administering Institutions

Institutions take responsibility for annual HREC reports and many of those institutions will be administering institutions with NHMRC grants, the conditions for which are contained in a standard Funding Agreement. Clause 24 of that agreement provides that ‘in carrying out this Agreement, the Administering Institution must comply… with… the NHMRC Approved Standards and Guidelines.’ (which are defined to include the National Statement). Clause 30.4 of the same agreement requires Administering Institutions to ‘immediately notify the NHMRC in writing if it ceases fully to comply with… the NHMRC Approved Standard and Guidelines. Such failures are among the grounds on which the NHMRC can suspend or terminate research funding’ (Funding Agreement clause 15).

Should reporting of a non-compliant HREC be treated as such a breach? Given that an institution is required to notify the NHMRC when it ceases ‘fully to comply’, any of the deficiencies recorded above from the last three annual reports of HRECs would appear to be sufficient.

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Some wider implications and questions

These data raise the question: when is an HREC decision sufficiently defective as not to merit respect or recognition? When there is no input from any one of the minimum members? When the gender balance is lower than 1 in 5 in either direction? When the decision is the only one or only one of 5 that the committee has made in a year? When none of the committee members have attended training in the last three years? When the decision is one of 30 made at the same meeting? When there is no reference in the decision to any one of the four key review criteria: research merit, justice, beneficence or respect?

Will tolerance of nonconforming practice lead to declining support for and recognition of HRECs and, in turn, of ethics review itself? If that recognition declines, will the need for ethics review be questioned? Would recognition that Australian ethics review lacks accountability and conformity to national guidelines threaten the reputation of Australian research, researchers and research institutions?

Doing nothing in the face of this evidence condones the nonconforming practices and risks breeding an indifference to ethics review and, in turn, to seeing it as irrelevant and unnecessary.

However, if a response to these data of deficiency is needed, at what level should that response be made: that of the HRECs, institutions or all the sector stakeholders? In short, who should take responsibility for the reliability of ethics review and how should that responsibility be implemented?

Contributors
Colin Thomson – Senior Consultant, AHRECS | AHRECS biocolin.thomson@ahrecs.com

This post may be cited as:
Thomson C. (2017, 22 March 2018) “More what you’d call guidelines”. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/more-what-youd-call-guidelines

Use of Imported Human Biospecimens in Research0

 

The use of biospecimens in research is a vital tool in the development of knowledge and innovation in biomedical research. There are a number of established biobanks, local and international, that offer a rich resource of human biospecimens for research purposes[1]. In most cases these resources are linked with genetic and/or other personal health information.

There is a vast amount of literature that comments on the ethical and legal challenges involved in biobanking, including the collection, processing and sourcing of biospecimens[2]. This blog post addresses the types of information that Australian HRECs and researchers require to establish the ethical acceptability of research involving the use of biospecimens, particularly where the samples are sourced and imported from an international supplier.

In Australia, the National Health and Medical Research Council (NHMRC) National Statement on Ethical Conduct in Human Research, 2013 (National Statement), Chapter 3.4 on Human Biospecimens in Laboratory Based Research’, refers to human biospecimens as ‘any biological material obtained from a person including tissue, blood, urine, sputum and any derivative from these including cell lines‘ and outlines the ethical considerations for the collection, storage and use of biospecimens in research.

Specifically, for imported samples, Chapter 3.4.13 holds that ‘researchers must establish whether these human biospecimens were obtained in a manner consistent with the requirement described in the National Statement and relevant Australian legislation.’ Where it cannot be established that specimens were obtained in a ‘manner consistent with the requirements described in the National Statement and relevant Australian legislation the biospecimens should not be used for research in Australia.’

Determining whether the imported biospecimens were obtained in a way that satisfies the principles of the National Statement and conforms to Australian legislation requires information relating to the provenance of the biospecimen/s. Provenance is a broad term that generally means where something comes from, its origins and the ‘process or methodology by which it is produced‘[3].

Establishing the provenance of samples is important because it goes to the heart of understanding how samples were first obtained and from where they were derived, rather than merely how the current researchers obtained them; and because the laws and ethical guidance in different countries may differ from those applicable in Australia. These factors can reveal a potential conflict between the manner in which samples have been obtained abroad and the ethical principles set out in the National Statement. In addition, Australian laws and other national guidance prohibit the sale or exchange of human tissue, effectively calling in to question the use of samples sourced from an overseas supplier who may accrue profits from their sale or exchange[4].

In some cases, commercialisation of biospecimens by third party suppliers may include biobanks or biospecimen repository centres which may gain income from the manufacture, supply and distribution of biospecimens. In this circumstance, it is not always clear to what extent there has been a passage of responsibility for prior undertakings made with the donor to the wholesaler to ensure the type or quality of the activity subsequently conducted with the samples. This may not pose a problem for the researcher but may pose a problem for the host institution.

A further concern that is frequently unclear is whether the donor was aware of, or consented to, the use as proposed in the current research. Determining the nature of consent for collection, re-distribution and research use from such suppliers is difficult. Information may not be provided on the jurisdictional regulations applying to donation and subsequent research use. Instead the only indication of practice pertaining to specimen collection and when it occurred is generalities about compliance with such regulations, rather than the specifics of what they were at the time, and how they may concur with previous and current Australian guidance.

The following information relating to sample provenance can assist researchers and HRECs to determine if the biospecimens were collected in an ethically acceptable manner and that their proposed use is respectful of donor expectations:

  • Evidence of donor informed consent for the use of their biospecimen/s is a paramount consideration for HRECs and is a primary indicator for how the biospecimen can be used in later research. Importantly, evidence of consent will indicate: whether the donors agreed to the scope and/or nature of subsequent research; how samples would be managed; and whether they were aware they would have no claims to any commercial gain from discoveries made by researchers or research organisations. In addition, such documents allow assessment of undertakings, if any, for researchers to feed-back findings that may be important for the donor’s blood relatives or community, particularly in the context of health research.
  • Information relating to the approval for and level of oversight and custodianship of the original biospecimen resource (obtained from a commercial company, biobank or research colleague/partner), and how this is passed to researchers gaining access to samples. Ensuring that appropriate custodianship arrangements are in place for the biospecimen/s can provide assurance on the way in which the biospecimen/s were obtained.

Custodianship arrangements may include transparent policies for the maintenance of the privacy and confidentiality of research participants, protocols for the distribution of samples to researchers and records pertaining to the informed consent and the identity of research participants.

Finding information relating to the provenance of samples for some overseas suppliers can be difficult and is generally limited to information accessible on supplier websites. Often it is not always obvious or clear how suppliers have obtained biospecimens. Often a Materials Transfer Agreement (MTA) is all that exists. This may contain provisions restricting how the biospecimen/s are used and for what purposes, and are generally understood as being indicative of the custodianship arrangements put in place to protect donor expectations.

In the absence of any information relating to the provenance of imported samples, HRECs and researchers may consider the use of biospecimens under a ‘Waiver of consent’ (National Statement, 3.4.12). This generally applies to situations where it is at least known that samples were collected during clinical procedures and stored in pathology facilities. Because no prior consideration was given to research use, no consent has been obtained from donors. Under such circumstances, because of the time since collection, and the numbers of samples, it may be impracticable to return to patients to inform them of the potential research use and to gain consent. The HREC must satisfy itself that the conditions for a valid waiver from the requirement for consent apply. This is a judgement based on the level of risk for, and reasonable expectations of, the original donors, management of samples and data, the merits of the study and potential benefits for others such as the community at large from undertaking the research.

Establishing the ethical acceptability of imported biospecimens is challenging for researchers and HRECs. Until such time as there is harmonisation of global biobanking standards, greater engagement of donors in understanding the community benefits accruing from biospecimen research, and increased awareness of the ethical issues underlying the collection and transfer of samples, all available information relating to sample provenance must be provided for scrutiny by reviewing HRECs[5].

Notes

1. An example of a list of international biobanks can be found at http://specimencentral.com/biobank-directory/

2. See for example, Caulfield T, Murdoch B (2017): Genes, cells, and biobanks: Yes, there’s still a consent problem. PLos Biol 15(7): e2002654. https://doi.org/10.1371/journal.pbio.2002654 and Don Chalmers et al. (2016) ‘Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era.’ BMC Medical Ethics 17:39 https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-016-0124-2.

3. The Australian National Data Service (ANDS) defines ‘Data Provenance’ as ‘to document where a piece of data comes from and the process and methodology by which it is produced’. <https://www.ands.org.au/partners-and-communities/ands-communities/data-provenance-interest-group>.

4. See Transplantation and Anatomy Act 1979 (Qld) s 40(1) and cognate state and territory legislation and discussion in the now revoked NHMRC, ‘Ethics and the Exchange and commercialisation of products derived from human tissue’ (Background and Issues Paper, NHMRC, October 2011) https://www.nhmrc.gov.au/_files_nhmrc/file/health_ethics/ethcial_issues/e103_ecpd_humantissue_111019.pdf.

5.  See example of donor awareness at HTA Human Tissue Authority The Regulator for human tissue and organs, Donating your tissue for research FAQs < https://www.hta.gov.uk/faqs/donating-your-tissue-research-faqs>.

Contributors
Ms Anne Walsh,
Manager Research Ethics and Integrity,
Office of Research Ethics and Integrity,
Division of Research and Commercialisation,
Queensland University of Technology
Anne.Walsh@qut.edu.au

Adjunct Professor Conor Brophy
Chair, University Human Research Committee (UHREC)
Division of Research and Commercialisation
Queensland University of Technology
Conor.brophy@qut.edu.au

Dr Conor Brophy
Conor has been a member of human research ethics committees in UK and Australia for 20 years. She chairs the Mater Misericordiae Ltd HREC and the Queensland University of Technology HREC, reviewing human research from all faculties. She has degrees in medicine, bioethics and clinical research and previously worked in health and pharma research and clinical governance.

Ms Anne Walsh
For 15 years, Anne has worked in a number of roles relating to clinical and research ethics and research governance and integrity. She has been a member of human research ethics committees in the public and private health sector. Anne has degrees in science, philosophy and law. She is currently a PhD scholar in the Law Faculty, QUT.

Acknowledgments:
Thanks to Dr Jane Jacobs, Director Office of Research Ethics and Integrity and
Dr Nicola Pritchard, Research Ethics Coordinator, Office of Research Ethics and Integrity, for review and input.

This post may be cited as:
Walsh A. and Brophy C. (2017, 1 February 2018) Use of Imported Human Biospecimens in Research. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/use-imported-human-biospecimens-research

Ethical use of social media as a recruitment tool0

 

Building the Conversation

From this month we will start including posts about the ethical design of human research. Our intent is not to present these ideas as the definitive or only way to approach a particular challenge/need but instead as prompts to get us all – participants, researchers, reviewers, regulators, administrators and other stakeholders – discussing useful and helpful approaches to the design, research ethics review and conduct of human research.

There are numerous reasons why social media can appear an attractive way to reach potential participants – it may be free or at least relatively inexpensive, it is increasingly ubiquitous across a range of Australian age groups (Sensis, 2017), and can be a powerful way to build an ongoing connection with a cohort of potential participants.

A recent issue of The American Journal of Bioethics focussed on the ethics of using social media as research platforms. An article by Luke Galinas and his colleagues (Galinas et al., 2017) noted the lack of resources and regulatory guidance in the United States on the use of social media as a recruitment tool. They concluded that this was a significant problem since, for all its benefits, use of social media is not without ethical and practical challenges and traps. Fortunately, these are not insurmountable. Galinas’ article explored how biomedical researchers might respond in the United States by attending to the issues of researcher transparency and respect for the privacy of participants; in this blog post, we provide advice for Australian researchers and reviewers in an effort to stimulate further discussion between them.

Excluding some potential participants – The penetration of social media platforms across all age groups of the Australian population over the last ten years has been truly remarkable. There do remain, however, some significant differences on the extent of usage depending on age, geographic location and socio-economic status. Consequently, open recruitment via social media may skew a participant pool towards area where social media use is more prevalent and may inadvertently exclude some groups of people with perspectives, views or voices that might undermine the value of a project’s finding.

Platform differences and exclusion – Not every social media platforms had the same user demographics; someone who uses social media 15 times per day may only be frequenting one platform. There is no single platform that is used by most social media users. Indeed, even platforms such as Facebook seem to be used more by a particular age-range of people within the Global North. Other countries have their own platforms that are heavily used within the region (e.g. China – WeChat (微信; Wēixìn) and Russia – VK social media (Vkontakte) and Odnoklassniki), but hardly ever by people outside that region.

Privacy rules and concerns – Privacy concerns are amongst the more significant reasons why some people do not currently use social media (Sensis, 2017). Indeed, many users do not understand the privacy rules of their preferred platform(s) and remain concerned about privacy. One large survey conducted by Evans et al. (2015) suggested that concern was greater among younger and more frequent users.

Comments from participants and others – Enabling participants to comment on the recruitment social media pages for a project might be an effective way to engage with potential participants. However, there are important reasons for caution about allowing participants to comment on such pages as they might expose themselves to risk. Individuals might divulge whether they are participants or were excluded by the screening tool. In addition, they might distort the data collected from others by prompting particular responses to their own comments.

Pseudonyms and de-identification –The presumptive remedy to many social media challenges is to delete, modify or otherwise obfuscate personal identifiers such as user names. However, some platform rules often specifically preclude such an approach (e.g. Twitter treats any such de-identification as a copyright concern). Furthermore, modifications of comments or descriptions raises at least the possibility the researcher fabricated or falsified data (much as occurred in Alice Goffman’s offline study, see Neyfakh, 2015).

Recruitment materials – Many national human research ethics arrangements, such as Australia’s National Statement on Ethical Conduct in Human Research specify that review bodies must consider and first approve recruitment materials, including the text of posts to go on a social media page. In most cases, this role will be delegated to the Chair (for executive review) or the Ethics Officer (for administrative review). The rigour and substance of this review should be proportionate to the risks and ethical sensitivities of a project. The need and purpose of this review reflects the potential for risks, privacy and other human research ethics matters that can be associated with a project’s recruitment strategy.

The application for research ethics review should cover the above matters and explain why the applicant believes the proposed approach is ethical, appropriate, respectful and justified. Such matters may also need to be discussed in the consent (if not the recruitment) materials. Similarly, research ethics reviewers should expect such a justification to be provided, be open to and accepting of innovation, offer praise where due, and share their thinking where uncomfortable with a proposed approach.

Like most topics in human research ethics, there is no single ‘correct’ approach with regard to recruitment and social media. Ethical research may be best pursued through reflection and collegial discussion.

References

Evans H, Ginnis S and Bartlett J (2015) #SocialEthics: A guide to embedding ethics in social media research.

Gelinas L. et al. (2017) Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations. The American Journal of Bioethics, Vol. 17, No. 3. DOI: 10.1080/15265161.2016.1276644

Neyfakh, L. (2015) The Ethics of Ethnography. Slate Magazine. Retrieved 8 November 2017, from http://www.slate.com/articles/news_and_politics/crime/2015/06/alice_goffman…

NHMRC (2007) National Statement on ethical conduct in human research. http://www.nhmrc.gov.au/guidelines-publications/e72.

Sensis (2017) Social Media Report 2017. Retrieved from: https://www.sensis.com.au/asset/PDFdirectory/Sensis_Social_Media_Report_2017-Chapter-1.pdf (accessed 7 November 2017)

Other reading

Chamber C (2014, 1 July) Facebook fiasco: was Cornell’s study of ‘emotional contagion’ an ethics breach? The Guardian. Retrieved from http://www.theguardian.com/science/head-quarters/2014/jul/01/facebook-cornell-study-emotional-contagion-ethics-breach (accessed 8 November 2015)

Leetaru K (2016, 17 June) Are Research Ethics Obsolete in the Era of Big Data? Forbes/Tech
http://www.forbes.com/sites/kalevleetaru/2016/06/17/are-research-ethics-obsolete-in-the-era-of-big-data/#1a083ad31cb9

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. (2017, 20 November 2017) Ethical use of social media as a recruitment tool Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/ethical-use-social-media-recruitment-tool

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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