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

Resource Library

Research Ethics MonthlyISSN 2206-2483

Outputs

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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.
.
[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.
.
[3]Martin Nakata, Disciplining the Savages: Savaging the Disciplines (Aboriginal Studies Press, 2007), chapter 11
.
[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.
.
[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).
.
[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
.
[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.
.
[8]10-year-old male, Primary Class Group Discussion, Field Research Session 1 (of 4) (Northern Territory, 13 May 2014).
.
[9] 10-year-old male, Primary Class Group Discussion, Field Research Session 1 (of 4) (Northern Territory, 13 May 2014).
.
[10]14-year-old male, Secondary Class Group Discussion, Field Research Session 3 (of 4) (Northern Territory, 20 May 2014).
.
[11] 10-year-old male, Primary Class Group Discussion, Field Research Session 1 (of 4) (Northern Territory, 13 May 2014
.
[12]Stella Coram, ‘Rethinking Indigenous Research Approval: The Perspective of a “Stranger”’ (2011) 11(2) Qualitative Research Journal 38, 45.

Terms and conditions apply0

 

Kids tell us that making decisions can sometimes be hard (anyone who has taken a child to an ice cream shop can attest to this). Adults don’t often give children choices and kids tell us that when they do it can be confusing: ‘what am I being asked?’, ‘can I really say no?’, ‘do they seriously care?’ and ‘what will happen if I make a decision the adult doesn’t like?’ are questions that might spring to mind. After all, they tell us that it’s not usual for adults to seek out children’s views, to let them make big decisions or to give up some of their ‘adult power’ and act on children’s wishes.

And yet children are required to ‘assent’ to research, often with little information about what research actually is and what they will be required to do. In most cases, they know that their parents have already given permission for them to be involved – which may be reassuring but also a bit daunting (how often is it that kids can say ‘no’ when their parents have already said ‘yes’?) – but in most cases a complete stranger comes into their home or schoolroom and pulls out a note pad and asks them whether their happy to answer a few questions. “Um OK?”

Since the Helsinki Declaration there has been an expectation that children provide assent to their participation in research. Often this entails providing them with a long-winded, legalistic and ‘pretty boring’ information letter, telling them that if they agree they might get a movie voucher or at least a packet of chips and a can of soft drink before asking them to tick a box to show that they agree. As a child in one of my studies reported, the process is ‘kinda like’ the terms and conditions process they go through when downloading a new app from i-Tunes. Like 73% of Terms and Conditions non-readers, kids in research often have no idea what they are signing up for and what their rights are when things go wrong.

In a recent study my colleagues and I conducted for the Australian Royal Commission into Institutional Responses to Child Sexual Abuse we got advice from children and young people about how to best help kids understand and consent to participating in research on a fairly sensitive topic. Based on this advice we conceptualized consent as an ongoing process that included six steps: (1) present information in a child-friendly and accessible way; (2) make sure they understand what research is and what they are expected to do; (3) give them the choice to participate (or not) and ask them to formally agree; (4) give them lots of opportunities (and the skills or tools) to bow out of the research (particularly after they’ve got a ‘feel’ for what they are being asked to do) or to change the way that they are participating; (5) be aware of the ways that kids resist or ‘dissent’ (yawning or sneaking out of the room might give it away) and constantly ‘check in’ with them in child-friendly ways (6) Get an agreement with them at the end of the research activity that they are still happy for their input to be included in the study and negotiate what, if anything, they’re happy for the researcher to share with their parent, teacher or older sibling who is standing behind the door.

In the paper “More a marathon than a hurdle: towards children’s consent in a safety study” my colleagues and I outline how we went through these steps with kids, we describe how we used felt toys, ‘stop signs’ and ‘rights posters’ to help children and young people consent and, most importantly, quote advice and feedback from children and young people on how adult researchers might best help kids to make decisions within the research context.

One tool we feature in the article is our “Charter of Rights” poster which we provide kids in our studies. The poster informs them of what they should expect from us, as researchers, and what to do if they are unhappy. The poster is given to the children prior to them meeting with our staff and is further explained before assent is sought. On the advice of children and young people who have advised our projects, the rights charter has also been used as the basis of a series of games and activities that can be used to help children understand their rights in research (and in welfare practice). More detail about these can be found here. My team at the Institute of Child Protection Studies are working with peers from the Centre from Children and Young People (Southern Cross University), UNSW and the University of Melbourne to progress ethical research with children and young people. We’re currently hosting a survey on ethical decision-making – take a minute to fill it in! We’re keen to chat with others who are grappling with how to meaningfully engage kids in research (and support them to make good decisions) and would love to hear from you. *Terms and Conditions Apply.

Contributor
Dr Tim Moore
Senior Research Fellow | Institute of Child Protection Studies, ACU
Bio page at ACUTim.Moore@acu.edu.au

This post may be cited as:
Moore T. (2017, 21 July) Terms and conditions apply; Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/terms-conditions-apply

PID Power: Persistent Identifiers as Part of a Trusted Information Infrastructure0

 

We live in a world where fake news and alternative facts are, unfortunately, part of how we share information. Expertise is becoming less valued and, in some cases, is even seen as a liability. In this environment, how do we engender trust in scholarly communications?

Developing a strong and sustainable information infrastructure, which enables reliable connections between researchers, their contributions, and their organizations, is critical to building this trust. Many of the pieces we require are already in place, but work is still needed to ensure that they operate the way we need them to, and that all sectors – funders, publishers, and universities, as well as vendors and other third parties – understand the vital role each plays.

Persistent identifiers (PIDs) play an important part in making the research infrastructure work, and doing so in a transparent way, which builds trust.  Wikipedia describes persistent identifiers as: “a long-lasting reference to a document, file, web page, or other object … usually used in the context of digital objects that are accessible over the Internet. Typically, such an identifier is not only persistent but actionable … you can plug it into a web browser and be taken to the identified source.”

In the scholarly communications world, PIDs enable clear identification of and reliable connections between people (researchers), places (their organizations), and things (their research contributions and works). Examples of PIDs in common use in research and scholarship include ORCID iDs, ResearcherID, and Scopus IDs for people; GRID, Ringgold, and Crossref Funder Registry IDs for organizations; and DOIs (Digital Object Identifiers) such as those minted by Crossref and DataCite for publications and datasets.

So, how exactly can PIDs help build trust in the research infrastructure – and the scholarship supported by that infrastructure?

Tackling the problem of fake reviews and reviewers is a good example of the power of persistent identifiers in practice. While the vast majority of reviews and reviewers are legitimate, unfortunately some individuals and organizations deliberately attempt to manipulate the system to their own, or their client’s, advantage. Industry organizations such as COPE – the Committee on Publication Ethics – recognize that this as an issue and it’s also found its way into mainstream media, where it’s often seen as more ‘evidence’ that science isn’t working.

But imagine a world where all research institutions routinely connect their organization ID to their researchers’ ORCID records and, at the same time, assert their affiliation. That institutional validation makes information about those researchers significantly more trustworthy.

And now imagine a world where researchers routinely use their ORCID iD during the manuscript submission/review process. Where publishers routinely include those iDs in the metadata for DOIs for the papers/open peer review reports authored by those researchers. And where that information is automatically pushed back into the author’s ORCID record, for example by Crossref or DataCite. Those trusted connections (assertions)  between each researcher and her/his publications and reviews could help editors and publishers build up an authoritative picture of each researcher, creating an even higher level of confidence that they are who they say they are. Adding in information from funders about the reviewer’s awards would add an even higher level of certainty. Taken together, the use of PIDs in this way could be a powerful tool in combatting the fake author and reviewer problem.

This scenario clearly shows that tackling the issue of trust in scholarly communication requires a community approach.. Each sector plays a role: institutions connect and assert affiliations to ORCID records; publishers connect and assert works; funders connect assert awards; and PID organizations including Crossref, DataCIte, and ORCID provide the “plumbing” that enables those assertions and connections to be made, easily and reliably.

Of course, researchers themselves also need to be involved in improving trust in scholarly communications. Using PIDs is a good (and easy!) first step – the technology is already in place across hundreds of systems that researchers interact with.  So, for example, researchers who use their ORCID iD when publishing or reviewing a paper, can authorize Crossref or DataCite to automatically update their ORCID record every time a DOI for one of their works is minted (provided that their publisher includes the iD in the metadata). Likewise some funders are already collecting ORCID iDs during grant application and then connecting information about awards granted back to the applicant’s ORCID record. And, in an exciting new opportunity, it’s now possible for researchers to sign into ORCID using their institutional credentials and, at the same time, grant their university permission to update their ORCID record, including asserting their affiliation. Vendor systems across all sectors – grant application, manuscript submission, CRIS systems, and more – are supporting all these efforts.

As Simon Porter of Digital Science pointed out in his keynote at PIDapalooza 2016, the challenges of achieving this goal are at least as much social as technical. Understanding why PIDs are important is every bit as critical as implementing them in researcher systems. So, if you’d like to  play your own part in making  our vision of a trustworthy PID-enabled research infrastructure a reality, please help us spread the word about the power of PIDs in your own organizations!

Contributor
Alice Meadows | Director of Community Engagement & Support, ORCID
Alice’s ORCID staff page and Alice’s LinkedIn page
a.meadows@orcid.org

This post may be cited as:
Meadows A. (2017, 27 July) PID Power: Persistent Identifiers as Part of a Trusted Information Infrastructure Research Ethics Monthly. Retrieved from: https://ahrecs.com/research-integrity/pid-power-persistent-identifiers-part-trusted-information-infrastructure

 

Strategies for resolving ethically ambiguous scenarios2

 

During the fall of 2013 and spring of 2014, I traveled to numerous universities across the United States and England to conduct in-depth interviews with physicists as part of the Ethics among Scientists in International Context Study, a project led by my colleague Elaine Howard Ecklund at Rice University(1). The study sought to find out how physicists approach ethical issues related to research integrity in their day-to-day work.

My colleagues and I began our interviews with a relatively straightforward question: “What does it mean to you to be a responsible scientist in your role as a researcher?” For many scientists, responsibility in research is a relatively black and white question: don’t falsify, don’t fabricate, and don’t plagiarize. And if one looks to the literature, scholarship and policy also tend to focus on these black and white instances of misbehavior because they are unambiguous and deserving of stern sanctions.

As our research unfolded, Ecklund and I began to question whether a black and white view of misconduct is overly simplistic. From a sociological perspective, whether scientists reach consensus about the meaning of unethical conduct in science is debatable because the same behavior in a given circumstance may be open to different ethical interpretations based on the statuses of the stakeholders involved and the intended and actual outcomes of the behavior. Our research ultimately demonstrated that the line separating legitimate and illegitimate behavior in science tends to be gray, rather than black and white—a concept we refer to as ethical ambiguity.

For the purpose of illustration, consider a scenario in which a scientist receives funding for one project and then uses a portion of that money to support a graduate student on a study unrelated to the grant. Many scientists would view this practice as a black and white instance of unethical conduct. But some scientists we interviewed view this an ethically gray scenario, indicating that the use of funds for reasons other than specified in a grant is justifiable if it means supporting the careers of their students or keeping their lab afloat. In these and other circumstances, scientists cope with ambiguity through decisions that emphasize being good over the “right” way of doing things.

What strategies help resolve these and other ethically ambiguous scenarios?

Frameworks for ethical decision-making offer some, but in my view limited, help. Kantian deontological theories assert that one should follow a priori moral imperatives related to duty or obligation. A deontologist would argue, for example, that a scientist has an obligation to acknowledge the origins of her work. And policies regarding plagiarism have a law-like quality. But how far back in the literature should one cite prior work? Deontology does not help us much in this example. Another framework, consequentialism, would suggest that in an ethically ambiguous scenario, a scientist should select the action that has the best outcomes for the most people. But like other individuals, scientists are limited in their ability to weigh the outcomes of their actions (particularly as it relates to the long-term implications of scientific research).

One ethical decision-making framework, virtue ethics, does offer some help in resolving ambiguity. Virtue ethics recognizes that ethical decision-making requires consideration of circumstances, situational factors, and one’s motivations and reasons for choosing an action, not just the action itself. It poses the question, “what is the ethically good action a practically wise person would take in this circumstance?” For individual scientists, this may require consulting with senior and trusted colleagues to think through such circumstances is always a valuable practice.

A pre-emptive strategy for helping scientists resolve ethically ambiguous scenarios is to create cultures in which ambiguity can be recognized and discussed. For their part, the physicists we spoke with do not view ethics training as an effective way to create such a culture. As one physicist we spoke with explained, “It’s the easy thing to say, oh make a course on it. Taking a physics course doesn’t make me a good physicist. Taking a safety course doesn’t make me safe. Taking an ethics course doesn’t make me ethical.”

There may be merit to this physicist’s point. Nevertheless, junior scientists must learn—likely through the watching, talking, and teaching that accompanies research within a lab—that the ethical questions that scientists encounter are more likely to involve ambiguous scenarios where the appropriate action is unclear than scenarios related to fabrication, falsification, and plagiarism. __

Contributor
David R. Johnson, a sociologist, is an assistant professor of higher education the University of Nevada, Reno, in the United States. His first book, A Fractured Profession: Commercialism and Conflict in Academic Science, is published by Johns Hopkins University Press.
davidrjohnson@unr.edu

This post may be cited as:
Johnson D. (2017, 21 June) Strategies for resolving ethically ambiguous scenarios Research Ethics Monthly. Retrieved from: https://ahrecs.com/research-integrity/strategies-resolving-ethically-ambiguous-scenarios

(1) (National Science Foundation grant # 1237737, Elaine Howard Ecklund PI, Kirstin RW Matthews and Steven Lewis, Co-PIs)

Page 1 of 212