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

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Research Ethics MonthlyISSN 2206-2483

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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

 

Building beneficial relationships when conducting research with migrant communities0

 

In my experience, projects that involve working with migrant groups and communities reveal a range of complex issues with regards to ethics and the types of the relationships between the researcher and participants. While acknowledging the importance of formal ethical requirements I also believe that the concept of research ethics has a dynamic nature which means that many dilemmas that will emerge during the study will require an individual approach that does not necessarily fit into set rules. In this context, researchers working with migrant communities may need to think about how they can do this in a way that benefits both sides and reflects well the research situation. One of the dilemmas here is how to balance the pre-designed with the spontaneous elements of this kind of academic research project, thus avoiding an instrumental approach to gathering data that could lack sensitivity to participants’ needs and situations.

One of the ways of thinking about the research process in ethical terms is to approach it by focusing on the following key elements: characteristics of the researcher and his/her social background, characteristics of the researched community, research methods and settings, research aim and wider agenda. What I also found helpful from my experience of conducting small-scale community-based qualitative projects was defining them through the prism of building relationships between the researcher and the participants in which the purpose and boundaries are clearly identified at all stages. While the characteristics of the researcher and his/her social background play an important role in defining their position within the group and should be taken into account, it is also important to consider how s/he wants to define the roles of researched community and engage with the participants. Would the participants be treated as anonymous interviewees, or act as full collaborators? In case of collaboration will their time be acknowledged and/or compensated, and how? How will the benefits from participation be communicated to the community, before, during and after the study?

Thinking and defining participants’ roles within the study can also help to distinguish different levels of formalisations of relationships between the researcher and the participants, for example, in the situation when one collaborates with community leaders and activists (as well as thinking whether it would be useful/appropriate to use them at all). Other factors to consider when identifying types of relationships could refer to levels of vulnerability of the participants in relation to state policies, immigration status, and media attention and, subsequently, in relation to the aim, subject and scope of the conducted research and its place and connection to wider contexts and networks.

The ‘research process as relationships’ approach also helps to acknowledge the dynamic nature of established connections and perceive them as something that can change and continuously develop throughout the study. The level of closeness, trust and involvement can differ at various points of the study depending on the range of individual and social circumstances of all involved parties. If the project allows, spending more time within the community before, during and after the fieldwork and identifying modes of engagement with community at each stage can help to establish positive relationships and ensure that participants benefit from them as much as the researcher. Working within community-based/migrant contexts can require additional levels of flexibility and sensitivity towards people and their lives, their concerns, tensions, experiences and stories. Integrating these complexities into the research process in the way that would benefit all groups involved in the study is an important ethical task. So, one should think how the benefits from participation will be communicated to the community, will the participation be recognised and how, whether any events will be planned after the fieldwork and whether any further opportunities for contribution to the project will be created? Furthermore, the conditions of the study itself can have an impact on time required to establish positive relationships, such as, the location of the interview (at participants’ home, community centre, public space); whether any visual methods are used and which ones (participant or researcher generated photography); number of the interviews or focus-groups, whether additional methods such as observation are used; what and how to be recorded (audio or video); whether researcher approaches the whole families or specific family members; etc.

Certainly, each project has its own unique elements and conditions and there will always be aspects of the study that will only unfold during the fieldwork when researchers are actively engaged with the participants. At the same time, thinking of the value and impact of the study and how researcher-participant relationships can improve it should be as important as designing interview schedules, consent forms, and invitation letters.

Please see the detailed discussion on ethics and positionality when conducting research of migrants’ homemaking practices:

Pechurina, A. (2015) Material Culture, Migrations, and Identities. Chapter 3. Researching Russianness: A Discussion of Methods. London: Palgrave.

Pechurina, A. (2014) Positionality and Ethics in the Qualitative Research of Migrants’ Homes. Sociological Review Online. Vol (19) 1.

Contributor
Dr Anna Pechurina – Leeds Beckett University | Senior Lecturer in Sociology in the School of Social Sciences
Leeds Beckett profile: http://www.leedsbeckett.ac.uk/staff/dr-anna-pechurina/ Personal webpage: http://www.annapechurina.com/
A.Pechurina@leedsbeckett.ac.uk

This post may be cited as:
Pechurina A. (2017, 26 July) Building beneficial relationships when conducting research with migrant communities Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/building-beneficial-relationships-conducting-research-migrant-communities

The Research Ethics Adviser Platform is now live0

Posted by Admin in Human Research Ethics, Services on July 14, 2017
 

We are delighted to announce that the beta test version of the Research Ethics Adviser Platform (REAP) is now live (https://ahrecs.com/about-this-service). REAP is a peer-to-peer service that puts researchers in touch with experienced Advisers who can offer independent ethics advice on a project’s research design, plan or protocol.

This service is not meant to replace research ethics review. Instead, we hope the service can complement the review process by enabling researchers to be better prepared for review. This could mean less frustration for both reviewers and researchers.

For AUD50, researchers will be provided with a quick and basic report on what ethical shape their design is in. After that, they can decide if they want a full report (AUD500) which will provide a fuller discussion of any ethical vulnerabilities, potential implications for research ethics review/participant experience during the project, and recommendations for changes.

While REAP is being beta tested these two kinds of reports are the only service provided by REAP but we anticipate creating facilities for help with responding to research ethics review feedback, writing variation requests, responding to peer reviewers, and offering advice on research integrity matters.

This is the first such service that we are aware of and we’re excited to launch it today

Links
REAP
FAQ
Register as a researcher use
View the current roster of REAs
Feedback on the beta test version

For any other question or comments on REAP (including an interest in registering as an Adviser) please send an email to gary.allen@ahrecs.com.

Contributor
Dr Gary Allen is one of the Senior Consultants at AHRECS. You can view his biography here and contact him at gary.allen@ahrecs.com

This post may be cited as:
Allen G. (2017, 14 July) The Research Ethics Adviser Platform is now live Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/research-ethics-adviser-platform-now-live

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