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Stop centring Western academic ethics: deidentification in social science research – Anna Denejkina0

 

This blog will provide a discussion of issues present in deidentifying marginalised research participants, or research participants who request to be identified, in the publication of qualitative research. As my research is mixed-method (quantitative and multi-method qualitative) it included several data collection techniques and analyses. For this discussion, I will specifically focus on the face-to-face and Skype interviews I conducted with participants in Russia and the United States.

My PhD study investigates intergenerational transmission of combat-related trauma from parent to child, focusing on the Soviet–Afghan war, 1979–89. This research includes interviews with Soviet veterans and family members of veterans; it was these interviews that raised questions of participant erasure and agency. From 12 face-to-face and Skype interview participants, one participant requested complete deidentification; one requested that their real name not be used but their location and other identifying details remain; two participants requested that only their first names be used and their location and other identifying details remain; the eight remaining participants requested that they be fully identified, with some participants sending me photographs of them and their families for inclusion in research publications. Given the social and political sensitivity that persists in Eastern Europe around the discussion of the Soviet invasion into Afghanistan, I had to consider and discuss with participants that requested they be identified the issue of their safety.

My research participants are marginalized participants by virtue of the topic of my research, the Soviet–Afghan war, and the ongoing silencing treatment they’ve received during and following the war by the state:

To take just two examples: in the hope of obscuring the true impact of the war, some local authorities refused to allow special areas in cemeteries to be set apart for the graves of soldiers killed in Afghanistan; while others forbade the cause and place of death to be stated on gravestones or memorial shields. (Aleksievich, Whitby & Whitby 1992, p.5–6)

Given academic broad-stroke standards of deidentifying research participants, we must review the ethics of this practice as it can promote and perpetuate erasure of marginalised participants and the silencing of their voices. Some textbooks on the topic of ethics in the social sciences approach anonymity and deidentification of participants from the angle that anonymity is part of the basic expectations of a research participant, without elaborating that anonymity is not always desirable nor ethical (see for example Ransome 2013), essentially replicating the medical model of human research ethics developed for the regulation of biomedical research in the United States (Dingwall 2016, p.25). Such an approach does not address the issues of presenting anonymity as a status-quo in social research, and makes a sweeping – and a Western academic – generalisation that anonymity is one of the vital assurances researchers must give to their participants to keep within their duty of care (that is, that researchers have at least some obligation to care for their research participants).

This approach to research ethics negates participant agency, particularly those participants that request they be identified in research. Furthermore, forced anonymity can be an act of disrespecting participants (Mattingly 2005, p.455–456) who may have already experienced invisibility and who are then further erased through anonymity by researchers (Scarth & Schafer 2016, p.86); for example, “in some Australian and, in particular, some Indigenous cultures, failing to name sources is both a mark of disrespect and a sign of poor research practice” (Israel, Allen & Thomson 2016, p.296).

As researchers, we must also question if presenting this approach as a vital tenet of social research can become a damaging rule-of-thumb for new researchers who might, therefore, not question the potential undermining of participant agency, and use deidentification unethically as a sweeping regulation within their research without consideration for the individual situations of their research participants. This is part of the issue created by applying a medical model of ethics assessment processes to the social sciences, in which the prevailing interpretation is that deidentification is also required within social research, whereas the reality is that specific agreements between the researcher and the research participant must be honoured.

The ethical dilemma, therefore is: can researchers ethically deidentify participants at the expense of the participants’ agency, potentially perpetuating the historical and symbolic erasure of their voices and experiences? I argue that, based on research design and data collection methods, this decision-making process is an ‘ethics in practice’ and must be approached in context, individually for each study, and for each individual participant.
As scholars, we want to minimise or eradicate harm that might come to our participants through our research. While we think “in advance about how to protect those who are brought into the study” (Tolich 2016, p.30) this must be a continual process throughout our project, in which we “work out the meaning of what constitutes ethical research and human rights in a particular context” (Breckenridge, James & Jops 2016, p.169; also see Ntseane 2009). This is important to note, because protection does not only refer to participants but also to others connected to them. For example, the use of a real name at the request of a participant may expose their family member(s) who were not part of the research.

Consequentialist approaches to ethics suggest that “an action can be considered morally right or obligatory if it will produce the greater possible balance of good over evil” (Israel, 2015: 10; also see Reynolds, 1979). This is an approach we could take to issues around deidentification; however, this also means that researchers must know what is good or bad. In studies like mine, this would mean knowing (or making an attempt, or an assumption to know) what is good or bad for my research participants. This action is infantilising, and places the researcher above the research participant by making the final call ourselves, which is to remove participant agency – if we can assume participants are autonomous during the research consent process, we must also assume that they are autonomous in making decisions with respect to their identification (Said 2016, p.212). Additionally, this action may be culturally insensitive given that Western human research ethics committees follow Western cultural guidelines, centring the dominance of Western academia.

The ethical issues I faced during my PhD research highlight why researchers cannot take a sweeping approach to deidentification in qualitative research – not even for a single study. ‘Ethics in practice’ means that each participant’s situation is analysed individually, and issues around erasure, safety, and their agency weighed against each other to reach a conclusion. I propose that if this conclusion is at odds with the preference of the participant, that it must then be taken back to the participant for further discussion. Not implementing this aspect of ‘ethics in practice’ goes against social science ethics, that we must avoid doing long-term and systemic harm, both of which come through erasure and silencing. We must also remember that “any research project has the potential to further disenfranchise vulnerable groups” (Breckenridge, James & Jops 2016, p.169), and ignoring the wishes of participants regarding their identification due to a Western model of ethics can cause further damage to these groups.

References:
Aleksievich, S., Whitby, J. & Whitby, R. 1992, Zinky Boys: Soviet voices from a forgotten war, Chatto & Windus, London.

Breckenridge, J., James, K. & Jops, P. 2016, ‘Rights, relationship and reciprocity: Ethical research practice with refugee women from Burma and New Delhi, India’, in K. Nakray, M. Alston & K. Whittenbury (eds), Social Sciences Research Ethics for a Globalizing World: Interdisciplinary and Cross-Cultural Perspectives, Routledge, New York, pp. 167–186.

Dingwall, R. 2016, ‘The social costs of ethics regulation’, in W.C. van den Hoonaard & A. Hamilton (eds),The Ethics Rupture, University of Toronto Press, Toronto, pp. 25–42.

Israel, M., Allen, G. & Thomson, C. 2016, ‘Australian research ethics governance: Plotting the demise of the adversarial culture’, in W.C. van der Hoonaard & A. Hamilton (eds),The Ethics Rupture, University of Toronto Press, Toronto, pp. 285–216.

Mattingly, C. 2005, ‘Toward a vulnerable ethics of research practice’, Health: An Inderdisciplinary Journal for the Social Study of Health, Illness and Medicine, vol. 9, no. 4, pp. 453–471.

Ntseane, P.G. 2009, ‘The ethics of the researcher-subject relationship: Experiences from the field’, in D.M. Mertens & P.E. Ginsberg (eds), The Handbook of Social Research Ethics, 1st edn, Sage, Thousand Oaks, pp. 295–307.
Ransome, P. 2013, ‘Social research and professional codes of ethics’, Ethics and Values in Social Research, Palgrave Macmillan, Basingstoke, pp. 24–53.

Said, D.G. 2016, ‘Transforming the lens of vulnerability: Human agency as an ethical consideration in research with refugees’, in K. Nakray, M. Alston & K. Whittenbury (eds),Social Sciences Research Ethics for a Globalizing World: Interdisciplinary and Cross-Cultural Perspectives, Routledge, New York, pp. 208–222.

Scarth, B. & Schafer, C. 2016, ‘Resilient Vulnerabilities: Bereaved Persons Discuss Their Experience of Participating in Thanatology Research’, in M. Tolich (ed.), Qualitative Ethics in Practice, Left Coast Press, Walnut Creek, CA, pp. 85–98.

‘Tolich, M. 2016, ‘Contemporary Ethical Dilemmas in Qualitative Research’, in M. Tolich (ed.), Qualitative Ethics in Practice, Left Coast Press, Walnut Creek, CA, pp. 25–32.

Statement of interest
No interests to declare.

Contributor
Anna Denejkina | Casual Academic and PhD  candidate in the Faculty of Arts and Social Sciences, researching intergenerational trauma transmission UTS | Staff profileAnna.Denejkina@uts.edu.au

This post may be cited as:
Denejkina A. (24 May 2018) Stop centring Western academic ethics: deidentification in social science research. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/stop-centring-western-academic-ethics-deidentification-in-social-science-research-anna-denejkina

What’s been going on at AHRECS0

 

We’re thrilled by how the AHRECS team has been growing and the expertise Sarah, Barry and Nik have brought to the team and the new services we can now provide. We hope in the coming weeks to announce some more additions to the team. The central ethos of resourcing reflective practice remains unchanged and we still strive to be a voice for constructive change.

You may have noticed a few refinements of the AHRECS web site have been happening quietly:

  • The Resource Library ahrecs.com/resources: the search functionality has improved (but still needs some work), and there’s now related materials with a link to other items in the Resource Library.
  • The blog pages ahrecs.com/blog: a form to subscribe to the Research Ethics Monthly; pdf copies of earlier editions, and within stories there will be links to related blog items and related Resource Library items.
  • The Our Services pages https://ahrecs.com/our-services  describes our various service.
  • The Research Ethics Adviser Platform https://ahrecs.com/about-this-service can now be used to obtain expert and independent advice on a research ethics review application prior to its submission to a research ethics committee. A quick advisory costs AUD50 and can be returned in less than 14 days.
  • The AHRECS home page has links to the COPE site (AHRECS is an associate member of COPE) and Retraction Watch (we’re proud to support their work).

The Research Ethics Monthly and Resource Library will remain free, but work is underway to:

  • Provide downloadable vignettes and discussion activities.
  • Short articles reflecting on recent news in the human research ethics/research integrity spheres.
  • An AHRECS app for smartphones.
  • A human research ethics game.
  • A research integrity game.
  • An online Q&A clinic.
  • Hosted webinars
  • And much more.

We hope that strikes you as useful, because we’re excited to be working on them.

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

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