Research is an essential part of academia. And, in order to conduct different types of research, there are set guidelines, principles, rules and boundaries to be followed and respected. Research ethics forms part of those elements.
In this article, I attempt to define the concept of ethics, reiterate its importance in research, highlight why processes need to change and adapt to current research opportunities and challenges, and offer some recommendations as to what can be done to improve the research landscape.
It is important to note that I specifically refer to non-clinical research within the maternity realm—as per my experience. Yet, readers may perhaps note the relevance of some of the points made here to different fields or aspects of research.
There is no consensus of what research ethics is or what it entails. However, I find the following definitions from the universities of Oxford and Stirling very helpful.
The University of Oxford defines it as: ‘A set of ethical and moral rules that guide research practice’. (Rogers et al., 2013) Source: Oxford Reference )
The University of Stirling, on the other hand, believes that:
‘Research ethics involves the application of fundamental ethical principles to research activities which include the design and implementation of research, respect towards society and others, the use of resources and research outputs, scientific misconduct and the regulation of research.’ (University of Stirling, no date) Source: University of Stirling.)
From these definitions, and noting the fallibility and imperfect nature of humans, we can see the importance of ethics in research.
The application process can be easy or complicated—depending on the type of research to be undertaken, or the demands of the research committee. The Health Research Authority (HRA) provides a good overview of what this usually entails. They state that:
‘Research Ethics Committees (RECs) review research applications and give an opinion about whether the research is ethical. They look at areas such as the proposed participant involvement and are entirely independent of research sponsors (that is, the organisations which are responsible for the management and conduct of the research), funders and investigators. This enables them to put participants at the centre of their review.” (HRA, 2024)
Research ethics is helpful. It serves as a guide and guardrail—allowing researchers to have the moral satisfaction and the peace of mind (from legal perspectives) that they have taken the right steps in ensuring that the research to be undertaken will be as ethical as possible.
However, regardless of the greatness of research ethics, it still has flaws—just like any human endeavour. Research is undertaken by humans who are complex social beings. Researchers usually want to find answers through interviews, listening events, participatory research methods, etc …
Doing the above necessitates warm human interactions. I often talk about the importance of keeping our humanness in everything that we do.
Unfortunately, ethics tends to numb it at times. In its attempt (s) to do “the right thing”, it makes the whole process so sterile and robotic, that it sometimes saps research of its necessary humanness. It makes spontaneous human interactions unnatural.
Humans are complex beings who socialise differently. Therefore, when we know that research participants, as well as ethics committee members, are all human beings with their own respective subjectivities, it is important to note the subjective nature of ethics and thereby humanise the process. Diluting the process of its humanness and automating it only contributes to unnecessary complications that often hinder progress.
Furthermore, the ethics application procedure can be tedious and time consuming. Researchers are having to deal with too much unnecessary red tape, which sometimes make participatory research impractical or at least heavy.
Unfortunately, this is not sustainable because we live in a fast-paced and practical world. The system (and mechanism in general) need a complete rethink and overhaul.
With ARC South London and King’s College, we conducted a successful listening event (using participatory research appraisal) that involved peer researchers, experts by experience and researchers. And, in a blog published in April 2023, the importance of flexibility, psychological safety and being natural was highlighted.
Another important issue to highlight is the fact that one usually does not need ethics if the work to be carried out is not deemed to have reached "research status". Yet, in general, everyone is normally expected to be responsible and ethical when carrying out any activity. Therefore, this means that the planned activity (ies) will unfold without official ethics guidelines and the whole process is left at the discretion of the relevant researchers and other stakeholders.
Does this give researchers and other participants enough “protection”? Who will bear the brunt of any negative consequences that could arise if a mistake is made? These are critical questions that need to be asked. The whole process is full of assumptions; and, in my opinion, that's where the problem is.
As a peer researcher, I have been involved in participatory events that did not require ethics approval because they did not qualify as research—even though experts by experience were required to share their respective maternal experiences through a range of activities. Yet, I have also taken part in a research project that had to obtain ethics approval before service users were invited to share their experiences via virtual interviews that were later transcribed, analysed and published.
To me, both examples constitute research, although I appreciate that this is not how they are currently viewed within the research arena. But, despite the differences of opinion on the matter, what I hope we can all generally agree on is the difficulty to sift through the nuances. What constitutes research needs to be reviewed and re-classified.
Through my experience in maternity co-production research, I have realised that holding an informal listening event can provide more authentic findings than a more formal structured process. Provided it is conducted safely, operating in a relaxed environment (free from ethics-related stressors) can put all stakeholders at ease.
Again, it makes the assumption that service users need to follow an already established set of protocols because they are the ones "to be studied". This too means that there is no balance of power between researchers and service users who are viewed as "subjects". It limits growth opportunities because, often, service users can suggest new ways of operating, only for researchers to respond with a reiteration of the ethics-induced limitations. This also means that there is no real co-production from the onset because service users (or experts by experience) are generally only involved once the ethics procedures are already in place.
The other assumption is that only researchers or academic institutions hold the power to make ethics applications and approve or decline them. This is wrong and very patronising.
We need to ask ourselves: Why can't experts by experience also decide whether researchers or academic institutions have the prerogative, knowledge, tools, soft skills, experience and moral soundness to conduct research with them? Why can't experts by experience also own the process or at least be equitable partners? Why are experts by experience expected to just accept the ethical approval that researchers hold at face value? Why are there no explicit platforms for them to be more acquainted with it, challenge it and improve it? Would trust not be better developed if "expertise" was re-evaluated and reframed?
Actually, at the event where this reflection was first presented (the Expert by Experience exhibition at Science Gallery London), it was great to notice the following on the wall: “EXPERTS BY EXPERIENCE: WHO KNOWS BEST”? (Pictured below, Zenab Barry and Vita Moteldo, who both presented at the exhibition.)
I commended the organisers for that and reiterated its importance. It was also reassuring to note that the other attendees shared my perspectives. I am truly grateful for the enriching discussion that we had that day.
Flicker et. al. (2007) shared an interesting perspective regarding ethics and the location of the ownership of knowledge. They argued that: ‘... ethical review forms … are primarily focused on the principle of assessing risk to individuals and not to communities and continue to perpetuate the notion that the domain of “knowledge production” is the sole right of academic researchers. ‘ (Source: Flicker et.al., 2007)
I find the last point of this assertion very interesting. And, to me, this reinforces the need to give ethics special attention—through different lenses. Research needs to be conducted with service users—not solely for (or on) them. Experts by experience need to be made partners not subjects.
Purpose, intentions and impact matter too. We need to ponder:
As my father always told me (before I even listened to Simon Sinek's "Why" speech), before you do anything, ask yourself “why?”; think about who is involved, and examine the relevance of your actions.
As already stated, despite its many challenges, ethics are still needed in research. Here are some recommendations which could help to mitigate or overcome some of these challenges:
Ethics is an essential part of research. It plays an important role in guiding researchers and holding them accountable for their actions. However, ethics, in its current form, needs to be completely overhauled. Processes need to be humanised and made more practical; participation needs to be more equitable and practical; and unnecessary bureaucracies need to be replaced by more streamlined processes.
I would like to thank Sohail Jannesari and his team Inspiring Ethics for inviting me to speak at the Expert by Experience exhibition at Science Gallery London. I enjoyed sharing ideas with all participants. I am grateful for the latter’s contribution too. Zenab Barry Consulting is ready for future collaborations.
Special thanks also go to Savitri Hensman who made the suggestion to turn my presentation into this article. I appreciate the opportunity and thank you and your team for working behind the scenes to publish this article.
Vita Moltedo, thank you for always cheering me on and for being a wonderful colleague. You also captured beautiful images on the day. Therefore, I would like to also commend you for your great photographic skills. Thank you—as always!
Professor Jane Sandall and the King’s College London Maternity and MAPS and NIHR ARC South London team, thank you for all the opportunities. Working with you all is a very enriching experience.
I am also really grateful to Dr Abigail Easter (reader in perinatal mental health, deputy theme lead, NIHR ARC South London maternity and perinatal mental health theme) for sharing really important insights regarding the ethics challenges and the ethics approval process. Abigail, thank you very much for your time and efforts.
Zenab is an International Development professional, with extensive experience in capacity building, advocacy and patient and public involvement and engagement (PPIE). She is passionate about maternal health equity and collaborates with a number of organisations. These include academic institutions such as the Universities of Oxford and Cambridge, Sheffield Hallam University and King’s College London (where she is a Visiting Research Fellow, a Peer Researcher and the PPIE Advocate and Coordinator for the No Recourse to Public Funds programme).
Zenab was a Director of Strategy and Business Planning at National Maternity Voices (Nov 2022 - February 2024) and Chair of Council at the same organisation (Nov 2020 - Nov 2022). During that period, she also represented all National Maternity Voices Partnerships at the Maternity Transformation Programme’s Stakeholder Council. Her focus on maternal health includes: co-production, PPIE, research and equity, diversity and inclusion (EDI) activities; as well as advocating bottom-up approaches to policy-making.
Zenab is the founder of Zenab Barry consulting. She relishes both written and verbal forms of communication. She has chaired countless meetings and events, written blogs and articles, and is in the process of publishing her autobiography.