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Human Research Ethics

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Magical incantations and the tyranny of the template0

Posted by Admin in Human Research Ethics on December 21, 2017 / Keywords: , , , ,
 

Building the Conversation

This month’s addition to the Buildinding the Conversation series reflects upon how institutional template consent material can have odd results/ill suited/nonsensical consequences.

It is widely accepted that human research ethics committees (HRECs) devote much of their time to the review of plain language statements or participant information and consent forms (PICFs). It should be noted that, unlike the US, Australia’s human research ethics arrangements have not been enacted into law. While chapter 2.2 of the National Statement does identify some required components of a consent strategy, the number and specificity of its provisions are much less than those often demanded by Australian research ethics committees. Historically, this amount of attention may have been due to the fact that, without guidance or experience, researchers devised their own PICFs, resulting in a possibly bewildering variety of structure, grammar and expression. In more recent decades, the focus of pharmaceutical sponsors on maximising disclosure has caused much of the increased length and detail.

Cartoon female figure holding a massive consent form with a confused expression.Probably in response to this variety and the increasing time devoted to review and the often detailed and even pedantic correction, HRECs hit on the idea of providing templates or standard forms for researchers to follow. The likely purpose behind these initiatives was to reduce the variety of PICFs and so in turn reduce the time that committees spent on them, correcting spelling, grammar and adding information the committees saw as being key to informing potential participants. An implicit message in the provision of standard forms and templates was that if researchers used these forms, it was more likely that the forms, and the projects, would be approved.

Ironically, the use of standard forms and templates may have generated perverse consequences, reversing the problem that they were designed to address. Frequently, templates contain expressions that, in the context of the research project under review, become meaningless, implausible or at least ambiguous so that committees increasingly need to ask researchers to clarify how commonly used terminology fits their project in order to provide appropriate disclosure to potential participants. Some phrases appear to be used like magical incantations to ward off the evil eye of the reviewer.

Here are some recurrent examples. We encourage readers to add to this list through the discussion forum, but not in a way that ridicules researchers. While there may be some comfort in acknowledging that the experience is shared, we would like to support better practices.

1. Participants can withdraw at any time. Although these words are a response to the National Statement (paragraph 2.2.6 (g)), they are often ambiguous or meaningless if not further explained. Accordingly, HREC members tire of asking (and researchers of responding) how this can be the case when participants and their information are not identified, either on collection or when participants’ data are merged. Often, the issue of whether participants who do withdraw can withdraw the data is also left open and needs clarification.

2. Counselling will be available or participants may contact Lifeline or Beyondblue. Again, a response to the National Statement (paragraph 2.2.6(c)), the context of particular projects demands some explanation: what counselling, by whom will it be provided, will they be independent from the research team and do participants have ready access to suitable communication technology etc.

3. All your information will be kept confidential. Again, although a response to the National Statement (paragraph 2.2.6 (f)), the statement is often inadequate because participants are likely to understand confidentiality to mean something like secrecy. At its broadest, confidentiality in this context means that the information will be used for the purposes of the research project but, without further consent, for no other purpose. So understood, consent would permit the use of participants’ information in the publication of results and outcomes of the research. However, it is more likely that participants understand this to mean no more that only research team members will have access to information, which is also incomplete. However, the major shortcoming of this statement is the lack of detail – a description of the manner in which participants’ information will be collected, stored, analysed and used is most likely to provide clarity: facts are usually better than assurances.

4. All responses will be anonymous. This may also be intended as a response to the same National Statement paragraph as in 3, but it suffers from a similar degree of ambiguity. Sometimes, HREC members find it necessary to ask how information collected in a face-to-face interview can be anonymous, a question unlikely to please a researcher who has carefully planned how to conceal the identity of interviewees in the way that interview data is analysed and stored. Sometimes, responses cannot be anonymised either because of the process of collection – a focus group, for example – or because there are not that many alternative personal meanings for an “anonymous” description (e.g. senior Australian politicians describing their former careers as a merchant banker, journalist and lawyer). Sometimes, participants do not want to be anonymised and failing to allow for identification precludes this possibility and denies a participant’s choice.

5. All research information will be kept in a locked filing cabinet in a locked office. This is, as all the previous examples, a response to the National Statement, and where applicable, to the mandates of the Good Clinical Practice guidelines, but when it is used in relation to a project that collects and stores data digitally, it is simply irrelevant and entirely inadequate as a description of secure storage of such data. (In our experience, the use of digital data has lead to a decline in the use of this outdated expression, but it still recurs). It can also offer a shield to processes that necessitate data transfer across borders, sometimes between field sites and the research base, sometimes between multinational collaborators, and sometimes just because of naivete in relation to cloud-computing.

Some HRECs have adopted templates that look like they were drafted by a group of contract lawyers after a long lunch. One could imagine them saying to each other ‘go on, add those four paragraphs about liability for reputational damage. See if anyone notices’. Such examples, however jocular, usually reflect the fact that boilerplate language is used in contract to protect the drafting party, not to facilitate communication. We have observed some reactions that suggest the carefully crafted language can cause derision and/or be seen as a ‘do not sue us’ exercise.

Some HRECs adopt and police expression preferences, for example, participants should only be ‘invited’ to participate and not ‘requested’ etc; researchers should refer to ‘participants’ rather than ‘subjects’ even when such a term would simply mask a research design that provides for no meaningful participation; these idiosyncrasies can be particularly frustrating for researchers conducting multisite projects.

Use of templates and standard forms risks incomplete and even misleading communication and can lead to apparent pedantry in HREC responses. Use of templates with groups of participants for whom such a template is inappropriate because of their level of literacy, language impairment, cultural emphasis on oral provision of information or distrust of official forms, also undermines any effort to gain real consent rather than just documenting apparent compliance.

Perverse consequences can be reduced if not eliminated with a focus on the purpose of these documents and a preference for short descriptions of how researchers conduct research, collect, store, analyse and destroy data rather than bland assurances that participants’ expectations will be addressed.

A significant question that remains largely unasked and unanswered is whether the consent strategies that are based upon a review body’s template actually facilitate the informed and voluntary consent of potential participants? How are the language and objectives of such consent processes actually perceived? There has been research on related questions of the effectiveness of consent strategies more generally, in both social science and clinical research, but it is not clear whether the insights gained in these studies have informed the development of templates. The growth of consumer groups focussing on specific health conditions offer opportunities for collaborative development of templates more likely to be effective.

Good guides implement principles. Accordingly, good consent guides implement the principle of respect: for participants, researchers and HREC members: respect for participants’ capacity and freedom to decide about participation; respect for researchers’ expertise to devise clear means of informing participants and respect for HREC members’ ability to recognise specific contexts of proposed research to which applications apply and review those accordingly.

The following advice in the National Statement, at page 7, about its use, applies equally to the use of consent templates:
“These ethical guidelines are not simply a set of rules. Their application should not be mechanical. It always requires, from each individual, deliberation on the values and principles, exercise of judgement and an appreciation of context.”

Acknowledgement

With grateful thanks to Mark Israel and Nik Zeps for their input.

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

This post may be cited as:
Thomson C. (2017, 22 December 2017) Magical incantations and the tyranny of the template. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/magical-incantations-tyranny-template

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.

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