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Disaster Research and its Ethical Review0

 

Disaster research ethics is a growing area of interest within the research ethics field. Given the lack of a universal definition of disasters, it should not be a surprise that disaster research ethics is defined in various ways. Early approaches focused on ethical issues in conducting research in the acute phase of disasters (O’Mathúna 2010). Given the similarities of some of the ethical issues, it came to include humanitarian crises and emergencies. A recent review combined mental health research in natural disasters, armed conflicts and the associated refugee and internally displaced persons (IDP) settings (Chiumento et al. 2017). Each of these settings raises distinct ethical issues, as well as practical challenges for those ethically reviewing disaster research. The 2016 revision of the Council for International Organizations of Medical Sciences (CIOMS) research ethics guidelines included a section on disaster research (https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMS-EthicalGuidelines.pdf). This blog will highlight a few of the practical challenges and note some efforts to respond to these.

One issue is how some disasters happen suddenly, while research ethics review takes time. The 2016 CIOMS guidelines call for innovative approaches to research ethics review, including ways to pre-assess protocols so that they can be reviewed rapidly once a relevant disaster occurs. As committees develop ways to adapt to disaster research, other review practices can be examined to identify innovative approaches to the challenges.

A key ethical issue to address with disaster research is whether a particular project should be conducted at this time with these particular participants. In the most immediate phase of an acute disaster, resources and energy should be focused on search and rescue. Researchers could hinder this, or divert scarce resources. At the same time, data should be collected as soon as possible to contribute to the evidence based for first responders. Ethics review committees should ensure justifications are provided for why a project needs to be done during the acute phase. Questions also need to be asked about whether disaster survivors have more important needs than to participate in research. For example, some have questioned whether children who survive war should be asked to participate in research when there are few resources available to help them with the mental health challenges of surviving war (Euwema et al. 2008).

With the move towards a more evidence-based approach to humanitarian work, international and non-governmental organisations (NGOs) are increasingly engaging in research and other evaluation programmes. Some of these organisations may have little experience with research or research ethics, and hence need additional support in developing and conducting projects. Much debate has occurred over what ‘counts’ as research and is therefore required to undergo formal research ethics approval. Rather than asking if a project is research or not, it is more important to identify the ethical issues in the project and ensure they are being addressed as carefully and thoroughly as possible (Chiumento et al. 2017). Needs assessments, projects that monitor or evaluate programmes, public health surveillance, and many other activities raise ethical issues whether or not they are formal academic research studies. At the same time, every project does not need to submit the same sort of detailed research ethics application as a randomised control trial of an experimental drug. Some sort of ethical evaluation should be conducted, and here again there is an opportunity to be innovative. Different formal and informal review mechanisms could be developed to support groups conducting different types of projects. The key concern should be that the ethical issues are being examined and addressed.

Also key here is that people in the communities from which participants will be sought are involved from the design of the project (O’Mathúna 2018). Too many ‘parachute projects’ have been conducted (some with ethical approval) whereby the project is designed completely by outsiders. Once everything has been decided, the team approaches the community only to identify a lack of interest in participating or that certain ethical challenges have been overlooked. Research in other cultures, especially in the midst of armed conflicts, is especially prone to such challenges. Review committees may need to encourage exploratory discussions between researchers and participant communities, or seek evidence of how such discussions have gone.

Unexpected ethical issues often arise in disaster research given the instability and complexity of its settings (O’Mathúna & Siriwardhana 2017). An approach where ethics review bodies give approval to projects and then have little or no engagement other than an annual report is especially inadequate in disasters. Researchers may be forced to make changes in fluid settings, or may encounter unexpected issues. Submitting amendments may not be practical or fast enough, when what is needed is advice and direction from those with research ethics expertise. Thus, initiatives are being developed to provide “on call” ethics advice.

This points to how disaster research often requires additional support and protection for researchers than other types of research. Researchers may enter danger zones (natural or violent) and may see or learn of horrors and atrocities. Researchers can be subjected to physical dangers or traumatised psychologically.. In addition to the normal stresses of conducting research, these additional factors can lead to mistakes and even ethical corner-cutting. Therefore, review committees need to carefully investigate how the physical and mental well-being of researchers will be protected and supported.

These are some examples of how research ethics needs to go beyond approval processes to mechanisms that promote ethical decision-making and personal integrity during research. One such project in which I am involved is seeking insight from humanitarian researchers into the ethical issues experienced in the field (http://PREAportal.org). We are also conducting a systematic review of such issues and collecting case studies from researchers. The goal is to produce a practical tool to facilitate learning lessons from disaster researchers and promote ethical decision-making within teams.

The world is increasingly experiencing disasters and conflicts and huge amounts of resources are put into responses. Some of these resources are put towards evaluating disaster responses, and developing evidence to support disaster responders. We can expect disaster research to increase and to be increasingly seen by research ethics committees. It is therefore important that ethics committees prepare themselves to respond to the ethical challenges that disaster research raises.

References

Chiumento, A., Rahman, A., Frith, L., Snider, L., & Tol, W. A. (2017). Ethical standards for mental health and psychosocial support research in emergencies: Review of literature and current debates. Globalization and Health 13(8). doi 10.1186/s12992-017-0231-y

Euwema, M., de Graaff, D., de Jager, A., & Kalksma-Van Lith, B. (2008). Research with children in war-affected areas. In: Research with Children, Perspectives and Practices, 2nd edition. Eds. Christensen, P. & James, A. Abingdon, UK: Routledge; 189-204.

O’Mathúna, D.  (2010). Conducting research in the aftermath of disasters: Ethical considerations. Journal of Evidence-Based Medicine 3(2):65-75.

O’Mathúna, D. (2018). The dual imperative in disaster research ethics. In: SAGE Handbook of Qualitative Research Ethics. Eds. Iphofen, R. & Tolich M. London: SAGE; 441-454.

O’Mathúna, D., & Siriwardhana, C. (2017). Research ethics and evidence for humanitarian health. Lancet 390(10109):2228-9.

Declaration of interests

Dónal O’Mathúna has been involved in research ethics for over twenty years. He was chair of the Research Ethics Committee at Dublin City University (DCU) for six years. In addition to his joint position at DCU and The Ohio State University, he is Visiting Professor of Ethics in the European Master in Disaster Medicine, Università del Piemonte Orientale, Italy. His research interests focus on ethical issues in disasters, in particular disaster research ethics. He was Chair of the EU-funded COST Action (2012-2016) on Disaster Bioethics (http://DisasterBioethics.eu) and is the Principal Investigator on the R2HC-funded research project, Post-Research Ethics Analysis (http://PREAportal.org).

Contributor
Dónal O’Mathúna, PhD
Associate Professor, School of Nursing & Human Sciences, Dublin City University, Ireland
Associate Professor, College of Nursing, The Ohio State University, Columbus, Ohio, USA
Dónal’s DCU profiledonal.omathuna@dcu.ie
Twitter: @domathuna
http://BioethicsIreland.ie

This post may be cited as:
O’Mathúna D. (2018, 26 February 2018) ‘Disaster Research and its Ethical Review’. Research Ethics Monthly. Retrieved from https://ahrecs.com/human-research-ethics/disaster-research-ethical-review

Ethical Use of Student Data in Higher Education – Advancing the conversation0

 

In a 2016 conference paper discussing ethical use of student data I noted that there was a ‘disconnect between national and international perspectives of the importance of institutional policy and guidelines regarding ethical use of student data, and the perceptions of academics about these guidelines’ (Jones, 2016, p300). I suggested that one strategy for bridging this divide was for conversations to be held both within and between institutions with an aim of informing and enhancing learning and teaching practice and culture. This post provides an overview of some of the conversations that have occurred in this area in the last 12 months in Australasia, particularly through the Australasian Society for Computers in Learning in Tertiary Education (ASCILITE).

First though, my interpretation of the phrase ‘ethical use of student data’. To me, and I am sure many others, this is much more than applying for, and being granted, clearance from your institution’s Human Research Ethics Committee. Certainly, this is an important step if you are intending to disseminate your findings as research and publish, and is sometimes a step that academic staff can overlook if research in their discipline does not normally involve ethics approval, or they do not consider this as they are not directly researching students, just their data. Ethical use also considers:

  • Protection of student privacy
  • Conversations with students regarding reasons for collection and use of data
  • Ensuring that data is used for informing and enhancing practice and the student experience
  • Obtaining consent from students; or, at least, informing students how and why their data will be used

The ability for students to ‘opt out’ of any data collection is a sensitive issue as there are some circumstances, for example, research into online discussion forums where this could adversely affect the research if students were given this option. This is just one aspect that needs further conversations and development of policy and guidelines.

ASCILITE is considered a leading organisation in the southern hemisphere for staff working in tertiary education in ‘fields associated with enhancing learning and teaching through the pedagogical use of technologies’ (ASCILITE, 2014) and as such is well placed to be leading the cross-institutional conversation on ethical use of student data. In 2017 some of the ways these conversations were facilitated included

  • Learning Analytics Special Interest Group ran a series of webinars with one facilitated by Paul Prinsloo having the topic of Responsible Learning Analytics: A Tentative Proposal
  • The 2017 ASCILITE Conference included an Exploratory Panel Session discussing ‘emerging ethical, legal, educational, and technological issues surrounding the collection and use of student data by universities, and the impact these strategies have on student trust and privacy.’
  • The Learning Analytics SIG also held a panel session discussing scenarios for Utopian/Dystopian future in regards to Learning Analytics

However, there was only one submitted paper with reference to ethical use of data (Brooker, Corrin, Mirriahi & Fisher, 2017). Similarly for the upcoming Learning Analytics Knowledge conference (LAK18), only one paper has any reference to ethics in the title, and at the 2017 conference there was one session with 3 papers. This suggests that whilst national and international bodies are promoting the conversations, there is still a way to go before these happen widely within institutions. Are there other organisations that are facilitating similar discussions?

Whilst promoting these conversations is a useful first step, there is also a need to continue to develop guidelines and processes. These will help ensure that staff are submitting ethics applications and their work with student data is conducted in an ethical manner. Additionally, Human Ethics staff need to work alongside academics and Learning & Teaching support staff; journals and conferences need to ensure that appropriate ethics approvals have been obtained and institutions need to involve students in all facets of Learning Analytics. These strategies will promote more widespread adoption of ethical practices in use of student data to inform and enhance learning and teaching practice and culture, and, ultimately, the student experience. Hopefully initiatives such as those outlined in this post will continue to grow and spark the necessary conversations – who will join us?

References

ASCILITE (2014) About ASCILITE. Retrieved from http://ascilite.org/about-ascilite/

Brooker, A., Corrin, L., Mirriahi, N. & Fisher, J. (2017). Defining ‘data’ in conversations with students about the ethical use of learning analytics. In H. Partridge, K. Davis, & J. Thomas. (Eds.), Me, Us, IT! Proceedings ASCILITE2017: 34th International Conference on Innovation, Practice and Research in the Use of Educational Technologies in Tertiary Education (pp. 27-31). Retrieved from http://2017conference.ascilite.org/wp-content/uploads/2017/11/Concise-BROOKER.pdf

Jones, H. (2016). Ethical considerations in the use of student data: International perspectives and educators’ perceptions. In S. Barker, S. Dawson, A. Pardo, & C. Colvin (Eds.), Show Me The Learning. Proceedings ASCILITE 2016 Adelaide (pp. 300-304). Retrieved from http://2016conference.ascilite.org/wp-content/uploads/ascilite2016_jonesh_concise.pdf

Declaration of Interests

Hazel Jones is a member of the ASCILITE Executive Committee and one of the facilitators for the Learning Analytics SIG.

Contributor
Hazel Jones
PhD candidiate/Educational Designer | University of Southern Queensland | USQ Staff ProfileHazel.Jones@usq.edu.au

This post may be cited as:
Jones H. (2018, 22 February 2018) ‘Ethical Use of Student Data in Higher Education – Advancing the conversation’. Research Ethics Monthly. Retrieved from https://ahrecs.com/human-research-ethics/ethical-use-student-data-higher-education-advancing-conversation

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

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

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