Introduction

I’ve focused my reading about ethics on the ‘Responsibility to participants’ as outlined in BERA’s (British Educational Research Foundation) ‘Ethical Guidelines for Educational Research’. I’ve also looked at the UK Research and Innovation (UKRI) guidance and read more broadly about ethical considerations in participatory research and in research which involves marginalised groups. I found that much of this reading links to both ethics and the practices and process which surround the research and also the research methods themselves, in choices of approach, facilitation and contingency planning. In this blog post I will look at the guidance and what it means more broadly and then look in more detail at my own ARP and additional considerations.

Ethics: Responsibility to participants

• Consent
• Right to withdraw
• Privacy and data storage
• Disclosure
• Harm arising from participation in research
• Transparency
• Incentives

Consent:

‘In order to achieve genuine agreement to participation, researchers have suggested instead that consent should not be limited to a point in time at which a form is signed. Rather, an interpersonal process should take place in which interactions and negotiations will lead to a meaningful informed consent.’

Guillemin and Gillam (2004) quoted by Padan (2022)

The guidelines are very clear that voluntary, informed consent must be obtained at the start of a study, ideally prior to the research taking place, and most often in a written, formal format. The UKRI guidance clearly outlines what information the participants need in order to give their consent, which they describe as, ‘giving sufficient and appropriate information about the research, to allow participants to make a meaningful choice about whether or not to take part’.

The information for participants should include:

• Name and status of the researcher
• Brief rationale for the project (what is the purpose and value?)
• An account of why the individual is being asked to take part
• What will happen to the data
• How the data will be shared
• Whether they will be identified (ask for preferences)

In addition to the consent from participants, it’s also necessary to gain permission from the gatekeepers, which in my case are the Course leader and Stage leaders responsible for the students’ welfare.

So far, so good. It seems possible to share the above information with potential participants and to devise a simple online form to document written consent. I would be concerned that the amount of information and formality may be off-putting but I absolutely understand the need for transparency and avoidance of harm, all of which this seeks to avoid or mitigate.

However, I’ve chosen the quote at the start of this section because I feel there is more to consent than the transaction of information sharing and signing a form. Apart from the fact that the participants have the right to withdraw at any time, that consent needs to be in an accessible format, and that it’s possible to consent to some aspects of the project and not others, there is also a question of trust in the relationship between the researcher and the participants.

As Parson points out, ‘exploring one’s identity as it relates to the identities of the group whose experiences one hopes to improve is an exploration that acknowledges differences in order to consider how the intersection of power and privilege impacts a researcher’s ability to conduct research ethically.’ (Parson, 2019 p.18). In my case, I am an outsider to the course, and have no power over grades or assessment, which might make the power balance more even, but on the other hand I am not someone the participants already know and trust, and I don’t share the lived experience of being neurodiverse. I am also white, a native English speaker and middle class, and perhaps this will make it harder for some participants to ‘consent’ to give their honest opinions. I am thinking of the broader means of consent that makes one’s contribution greater or smaller, more honest or more exposing.

Padan talks about the issues associated with written, contractual, informed consent, and I agree that this is not really the full picture and a more nuanced approach to consent is needed which builds trust and addresses positionality. However, I think the ‘interpersonal process’ also raises issues of power, agency and othering.

Right to withdraw:

As the UKRI state, consent should ‘…in an appropriate balance with resources available and researchers’ responsibility to truth-telling, be open to revision and withdrawal throughout the research lifecycle of a project.’

The right to withdraw is of course interwoven with consent and the BERA guidelines are clear that participants have the right to withdraw at any time. The researchers contact details should be provided and there is a requirement to reflect, should a participant wish to withdraw, on whether this is connected to the actions of the researcher and whether the duty of care has been met, and potential risks managed. (BERA p.25)

This leads on to a brief discussion of disclosure and incentives.

Incentives:

The UKRI is clear about the use of incentives. Whilst it acknowledges that small monetary reimbursement or the use of incentives like book tokens or entry into a prize draw might be used, ‘Payment should not override the principles of freely given and fully informed consent. Participants should know before they start the research that they can withdraw from the study without losing their payment.’ (UKRI 2023)

In my ARP, there will be no monetary benefit for the participants, but they will have the opportunity to shape the design of their course Moodle page and have an input into the design of Moodle pages (and information management) across the college.

Privacy and data storage:

Confidentiality and anonymity are key in relation to privacy and data storage. The General Data Protection Regulation (GDPR) and Data Protection Act 2018 provide clear structure as to the management of data, including that gathered for research purposes. In order to comply with these regulations and to conduct research ethically and without causing harm to participants, there are some really practical guidelines, some of which are outlined on the gov.uk website relating to user research.

Their advice includes:

• Planning carefully how information will be gathered, who will take notes and what will happen to the information.
• Sharing this at the consent stage with potential participants.
• Collecting the minimum amount of information needed.
• Storing details securely, ideally using computer networks that are password protected.
• Avoid unnecessary sharing or access and avoid sharing via email.
• Special care should be taken in relation to any sensitive personal information.
• Participants’ contact details should be deleted as soon as they’re no longer needed.

UAL GDPR guidance also includes this notice, ‘…all personal data within an academic research project conducted by staff or students should be processed on systems, storage and software provided by UAL. Personal email or storage must not be used.’

In relation to my project, I will use my UAL cloud storage, OneDrive, and consider using Panopto to record the audio during the session, which is also password protected. I will also plan how to take notes during the session and how this will be coded to protect the participants’ anonymity. This is particularly important as I will be asking them to disclose their neurodiversity and the impact this has on their use of Moodle (where applicable). The information regarding their neurodiversity will need to be separated from their consent forms so that the sensitive data is anonymous. When using online forms, I will use MS Forms, which are part of my UAL software and therefore protected by password and Multi-factor authentication. There should be no need to share the non-anonymised data, unless I ask a colleague to take notes and observe. In this case, I will ask my colleague who is on the PG Cert and ensure she is fully aware of the need for confidentiality.

Both Sarah and I will be introduced to the participants, our roles explained and the use of data made clear in an information sheet and verbally. It may be that there are participants who want to be identified and ‘own’ their contribution. This will also need to be thought through so participants can express a preference without feeling pressure.

Transparency:

Guidance regarding transparency very much relates to the topics discussed above and relates to the purpose of the project, methods used, rationale in approaching participants, consent, right to withdraw and ‘the confidential and anonymous treatment of participants’ data’ (BERA p.27). It also includes how the data may or may not be reused.

In addition though, I think there is the other side to this which relates to the positionality of the researcher. Who am I? Why am I conducting this research and why am I focussing on this particular course? For me, I think this will be important as I approach the students as a stranger and hope to recruit participants who are neurodivergent and may already feel ‘othered’ or marginalised and may not wish to disclose their situation. I will need to work towards gaining the trust of the students through transparency and integrity.

Disclosure:

In the BERA guidelines, disclosure is discussed as relating largely to the disclosure by participants of illegal or potentially harmful activity, and how this should be approached in relation to confidentiality and statutory obligations.

I don’t anticipate the discussions we will have in my ARP falling under these headings, but I suppose I will need to be prepared for any disclosure about the way the student participants view their course or tutors and what I can/can’t do in response.

From a lay perspective, which I appreciate is separate from the BERA guidelines, I would also include the disclosure of sensitive information, in the context of my ARP, in relation to neurodivergence and related issues. Confidentiality and anonymity are obviously key in this regard, unless participants actively want to be identified. As mentioned above, I will need to ensure I have relevant support information available should the project cause or trigger any distress, even that related to experiences at UAL or in education as a member of a potentially marginalised group.

Harm arising from participation in research:

‘Ethical research design and execution aim to both put participants at their ease and avoid making excessive demands on them.’ (BERA p.25)

Harm can obviously come from many directions in relation to research and all the areas covered above relate to the need to avoid harm to participants as a result of their participation. Some of the key areas not already discussed include:

Duty of care – as a researcher asking for participants there is a duty of care to minimise risk and if distress or discomfort occurs, to manage it appropriately. I feel there is a risk in my project that they participants may feel that their ‘neurodiversity’ is exactly that, and that their diverse experiences make the focus group feel forced and uncomfortable. I will need to think carefully about the way I manage the session and what I ask the students to do so that they feel that their individual contribution is valid. I will also ensure I have signposting to support services available.

Avoid favouring one group – there may be a risk that other students feel excluded by my request for neurodiverse participants. I will make it clear why I need to limit the size of this group, and also that I will be asking for feedback from everyone on the Moodle page. I will also be very open to running the session again for a different group of students.

Working with marginalised groups – ‘Researchers should consider the impact of their research on the lives and workloads of participants, particularly when researching vulnerable or over-researched populations.’ (BERA p.25). I have some concern that neurodiverse students are often the focus of research at UAL at the moment and they may feel they are carrying an extra load, as they are asked to participate in research projects. I will need to ensure the load is manageable and that the purpose is clear. I will also need to be sensitive that this and the point above may come up during the recruitment of participants and ensure I am clear about my rationale and planning.

Reflect on any withdrawals – As mentioned above, there is a clear need to reflect carefully if participants decide to withdraw and to question if there was an element of the project design that contributed to this decision.

In terms of potential harm, I’m concerned about focussing specifically on neurodivergent students, whether this will create a feeling of ‘othering’ and if it will inadvertently exclude some disabled students because they don’t identify as being neurodivergent. For example, the disclosure of disability is lower amongst our international students. In addition, there is the concern about anonymity and about asking students to participate in a focus group, rather than individually.

I feel there is a high risk I will have got this wrong in some way, but without wanting to ignore advice from knowledgable and experienced colleagues, I also really want to try asking, and see what happens. The quotes below from the LSE blog ‘How do we know that our research is inclusive’ is actually about challenging the norms of academic research and ensuring the voices of marginalised groups are heard. It’s not about ignoring the voices of your experienced colleagues! However, it helped to give me courage to try out my idea, in a way which I hope will not cause harm, and to see what happens.

‘There are no definitive rules on what inclusive research is, nor how it is done. However, the focus is on working with underrepresented groups, such as disabled people, to shift the balance of power away from the researcher so that those with lived experience can have an authentic voice in shaping the research process.’ (Read, Parfitt, Bush 2020)

‘This means we have to be willing to hear the voices of those who have been excluded, in order to understand which research processes work, and which do not. We need to be open to trying new things and be aware that we will likely get things wrong – but getting things wrong is important in allowing us to learn and improve.’ (Read, Parfitt, Bush 2020)

As I’ve mentioned above, I think a key part of ‘getting this right’ will be about trust. Whilst I want the participants to feel they are in safe hands, and that the project is structured and organised, and that their input will be valued and recorded and protected, I also think there will be space to be honest about my concerns in this area and to ask for feedback about my approach. I think this is part of the reflective process in any case, but also I hope it will enable a greater sense of agency for participants, as well as informing future projects for me. As Bunting and Hill say in their ‘Belonging through compassion’ blog,

‘Revealing our shared humanity shows we are on their side. By doing so we encourage others to have the courage to share their authentic selves; necessary for a sense of belonging to flourish. This requires our own courage to hold vulnerabilities and accept uncertainty.’ (Bunting and Hill 2023)

There is much more to discuss here in relation to potential harm, marginalised groups, positionality and power, and research methods. Please see my Social justice post and Research methods for more reflections.

Bibliography:

Bali, M. and Zamora, M. (2022) ‘2: Intentionally Equitable Hospitality as Critical Instructional Design’ in Designing for Care, Pressbooks Available at: https://pressbooks.pub/designingforcare/chapter/intentionally-equitable-hospitality-as-critical-instructional-design/ (Accessed 7 January 2024)

Banks S.(2016) Everyday ethics in professional life: social work as ethics work, Ethics and Social Welfare, 10:1, 35-52, DOI: 10.1080/17496535.2015.1126623 (Accessed 20/10/23)

British Educational Research Association [BERA] (2018) Ethical Guidelines for Educational Research, fourth edition, Available at: London.https://www.bera.ac.uk/researchers-resources/publications/ethical-guidelines-for-educational-research-2018

Bunting L, Hill V, 2023 Relationships: Trust Available at: https://belongingthroughcompassion.myblog-staging.arts.ac.uk/relationships/ (Accessed 6 Nov 2023)

Gov.uk Service Manual: User Research, Managing user research data and participant privacy (2018) Available at: https://www.gov.uk/service-manual/user-research/managing-user-research-data-participant-privacy#managing-the-research-data-you-collect-and-use (Accessed 6 Nov 2023)

Padan, Y. (2022) ‘Consent’ Practising ethics Available at: https://www.practisingethics.org/principles#consent (Accessed 6 November 2023)

Parson, L (2019) ‘Chapter 2: Considering Positionality: The Ethics of Conducting Research with Marginalized Groups’ in Strunk and Locke, eds. Research Methods for Social Justice and Equity in Education. Cham: Springer International Publishing pp. 15-32

Read S, Parfitt A, Bush T, (October 2020) How do we know that our research is inclusive https://blogs.lse.ac.uk/impactofsocialsciences/2020/10/27/how-do-we-know-that-our-research-is-inclusive/ (Accessed 6 Nov 2023)

UAL, Information Governance, Records Management and Data Protection Available at: https://canvas.arts.ac.uk/sites/explore/SitePage/45194/records-management-and-information-governance (Accessed 6 Nov 2023)

UK Research and Innovation (UKRI) (2023) Research Ethics Guidance, Available at: https://www.ukri.org/councils/esrc/guidance-for-applicants/research-ethics-guidance/ (Accessed: 6 Nov 2023)