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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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

Ethical research with young children: Whose research, whose agenda?0

 

The last decade has seen increased global focus on research with young children within and across a range of disciplines (Farrell, 2016). The period, birth to age eight years, known colloquially as the ‘early years’ or ‘early childhood’, has been conceptualized as pivotal to young children’s current wellbeing and future life chances and, in turn, the increasing focus of research within the disciplines of education, health, human services, developmental science, law, economics and neuroscience. New theoretical perspectives, expanded methodological approaches and fresh lines of inquiry are being brought to bear on the ethical design, conduct and dissemination of early childhood research (Kagan, Tisdall & Farrell, 2016). The global focus on ethical research with young children has been prefaced, to some extent, by global recognition of the rights of children to participation and protection in everyday activities (Tisdall, 2012). Despite the focus on children and their rights, child research is largely an adult enterprise serving adult-driven agendas, albeit driven by genuine adult concern for children’s rights to participation and protection. On the one hand, it is driven by the imperative to protect children, quite rightly, from risk of harm, often drawing upon normative views of child development and young children’s pre-competence or developmental incapacity to consent to, participate in or withdraw from research. On the other hand, there is a growing quest to listen to and consult with children as competent and active research participants, while still enacting protective ethical obligations towards them (Alderson & Morrow, 2011). While much child research claims to be with children rather than on, for or about children, the enterprise is typically driven by the agendas of research productivity, performativity and empirical leverage of research within policy and provision for young children – by and for adults. The upshot is that some children, families and communities increasingly experience the over-burden of research, their demographic characteristics making them prime sites for research and their participation essential for attaining research targets and outputs. The enterprise of ethical research with children calls for ethical consideration of the adult performance-driven agendas that drive much child research. It calls for consideration of the agency and active participation of children, families in communities in ways that respect their decision to engage in the research and greater affordances of co-constructed research for children and adults than is currently the case.

References

Alderson, P., & Morrow, V. (2011). The ethics of research with children and young people. A practical handbook (2nd Ed).London: Sage.

Farrell, A. (2016). Ethics in early childhood research. In A. Farrell, S.L. Kagan & E.K.M. Tisdall (Eds.), Sage handbook of early childhood research (pp. 163-184). London: Sage.

Kagan, S.L., Tisdall, E.K.M., & Farrell, A. (2016). Future directions in early childhood research: Addressing next-step imperatives, In A. Farrell, S.L. Kagan & E.K.M. Tisdall (Eds.), Sage handbook of early childhood research (pp. 517-534). London: Sage.

Tisdall, E.K.M, (2012). Taking forward child and young people’s participation. In M Hill, G. Head, A. Lockyer, B. Reid & R. Taylor (Ed), Children’s services: Working together (pp.151-162). Harlow: Pearson.

Contributor
Professor Ann Farrell
Head, School of Early childhood and Inclusive Education
Faculty of Education Queensland University of Technology
QUT staff page a.farrell@qut.edu.au

 

This post may be cited as:
Farrell A. (2017, 23 October 2017) Ethical research with young children: Whose research, whose agenda? Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/ethical-research-young-children-whose-research-whose-agenda

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

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