BU Research Blog

By Prof Jonathan Parker, Chair of the Social Sciences & Humanities Research Ethics Panel

It can be very easy to become a little confused about research ethics processes within universities. The spread of research ethics review has grown inexorably in the UK since 2005 when the, then, Department of Health introduced research ethics scrutiny into social care following developments since Nuremberg and the Declaration of Helsinki which established biomedical ethical review processes to safeguard against potentially serious harms to research participants. The introduction of research ethics into arts, humanities, and social sciences, alongside biomedical and natural science research, has not always been easy, and confusions with homogenous processes have been critiqued. However, over the last 16 years, UK universities have seen the establishment of research ethics review processes through the formation of research ethics panels. These differ across universities in their operational minutiae and focus, although there are similar forms and underlying criteria in each to ensure that funding bodies, publishing houses and universities can assure themselves of due process and consideration in safeguarding both those participating in research studies and themselves.

At BU, research ethics is governed by an overarching university research ethics committee, which is chaired by an independent lay member. This committee deliberates the processes of research ethics in two operational panels and develops strategies and policy that are presented to Senate for consideration and ratification. It is the two research ethics panels with which most academics are likely to have dealings. We have one panel specifically dedicated to science, technology and health research chaired by Prof Sam Porter and a second concerned with the social sciences and humanities (including practice-based arts) chaired by Prof Jonathan Parker. Both panel chairs are supported by a deputy – Associate Prof. Dr Jayne Caudwell in science, technology and health and Prof Richard Berger in social sciences and humanities. The panels comprise members from across the university’s faculties and departments aiming for broad expertise, disciplinary scope and balance. Roles on the panels are undertaken for a period of three years, with the opportunity of renewal (maximum five years), to ensure there is continual refreshing of the membership, thinking and practice and also continuity.

Each panel meets on a monthly basis to scrutinise research ethics checklists and accompanying documentation, such as Participant Information Sheet and Participant Agreement Forms, from academic staff and PGRs (high risk) to ensure that ethical, moral and governance issues are met and to offer advice and support to researchers. The researchers, themselves, are invited to attend discussion at a panel meeting, which currently takes place online, and to present their studies and engage in debate about the ethical implications of their work and how potential harms can be prevented and mitigated. The process is designed to be collegiate and supportive and to ensure that research can be undertaken. Of course, attending the panel can raise anxieties but members try hard to put people at their ease and to keep the focus on developing the best possible research project in ethical terms. The panels are there to consider first and foremost any ethical issues that may arise within the proposed research and how this is addressed. However, it may be the case that questions are raised about the way the research is presented in outward facing documents or how the research is designed. The reasons for this are not to take issue with the academic thrust or to champion a particular methodology or research philosophy but to consider the effects on people and the confidence they can have in the research – so, they become an ethical concern.

What we look for in a good, ethically sound research proposal is:

• A clear, coherent approach to the research
• Explicit consideration of issues affecting potential participants, researchers, general public, discipline and university
• A concern for moving beyond from simply ‘doing no harm’ to actively benefitting people and society wherever possible
• A focus on maintaining dignity, privacy and confidentiality
• Ensuring people are not identified and that participants can be assured of their anonymity, or able to waive that where appropriate and wanted, when research is disseminated
• Finding ways for people often excluded or hidden from having a voice to participate and be included within research studies
• Emphasising the voluntary nature of participation and consent for involvement except in the most exceptional circumstances
• Sound data management plans and safe, GDPR compliant storage of data

The panels only scrutinise PGR (high risk) and staff research and do not get involved in PGR (low risk), undergraduate or PGT projects as these remain within the purview of supervisors, ethics champions (pgr) and the respective programme ethics teams (ug/pgt) within departments. However, where members of staff have developed specific projects as part of the taught curriculum these may be viewed by panel as they become staff research.

The panels are constantly refreshing as mentioned above and if you are interested in developing your expertise in research ethics you may wish to put yourself forward as a potential member. Our RDS Research Governance Team, Sarah Bell and Suzy Wignall, without whom the panels could not operate, circulate calls at appropriate times and should you be interested you should contact your Deputy Dean for Research and Professional Practice.

by Prof Sam Porter, Chair of the Science, Technology & Health Research Ethics Panel

One of the core principles of ethical research is that people should have a free choice as to whether or not they wish to participate in a research project, and that they should know what that will involve and how it might affect them before they make that choice. In short, they should give their informed consent. What we wish to concentrate on in this blog is the ‘informed’ bit of this phrase. In our work on ethics panels, we have sometimes observed applications in which almost all the concentration is on the ‘consent’ part, making sure that the paperwork giving permission to proceed is correct and watertight. This is unfortunate, because if someone is not properly aware of what they are letting themselves in for, then their consent is meaningless; it is ‘uninformed‘. This isn’t a matter of researchers deliberately setting out to hoodwink and deceive potential participants; it’s more a matter of them pitching the information at a level that compromises clarity and ease of understanding.

What we wish do here is to provide a few pointers that will help ensure that your Participant Information Sheet is written in a style that facilitates effective dissemination to potential participants of the information they require to make an informed decision.

1. Avoid blinding by science: researchers can be so immersed in their research that the language of their subject area becomes so natural to them they assume that everyone shares that language. Rest assured that they do not. It is really important to avoid technical research terms in a Participant Information sheet and to describe what you are doing in language that will be understood by those not involved in your research speciality.
2. Indeed, we would go farther than that. The language used in a Participant Information Sheet should be accessible to all those who are being asked to participate. Perhaps because they spend their working lives in tertiary educational environments, researchers tend to greatly overestimate people’s linguistic capacities. The US National Center for Biotechnical Information recommends that a patient information sheet should be pitched at a reading age of 11-12 years old. Indeed, this may not be young enough. There is evidence to indicate that the average adult reading age in the UK is 9 years old. Remember, this is an average which means lots of people have a younger reading age.
3. Whatever you may think of its editorial line, you could do worse than model your language level on that of The Sun, which has a young reading age and adopts a clear, no nonsense, if sometimes overly aggressive style. While use of the active voice and a conversational tone is much more effective than passive formality, a Participant Information Sheet should always be polite, respectful and invitational in its approach.
4. Pitching a Participant Information Sheet at a young reading age is not about being patronising but being clear. Indeed, the clarity that it demands is a very good exercise for researchers to make sure that, without the camouflage of technical jargon and convoluted language, their research project has a transparent logic and is practically cogent.
5. Of course, one size does not fit all. For example, if you were conducting research into a health service organisation, it could be appropriate to include more professionally-oriented information in a Participant Information Sheet seeking to recruit senior health service managers than if members of the general public were being asked to be involved. Still, we would recommend always erring on the side of simplicity and clarity, rather than assuming knowledge that people may not have. If groups with different sorts of knowledge and perspectives are being asked to be involved, we would advise that separate, specifically targeted Information sheet should be used to inform the members of each group.
6. You can check the reading level of your Participant Information Sheet on Word. We’ve done just that for this blog, and, despite its linguistic informalities, it has come out with a score of 43.8 on the Flesch-Kincaid reading-ease test, which puts it in the category of ‘Difficult to read’! Looks like it’s a matter of doing as we say, not as we do! Though, in our defence, that’s not easy.
7. We tried harder and came up with: ‘People need to know what’s involved in being in a research project. They need to know before they agree to take part. Researchers need to be clear and simple when they tell them. They shouldn’t use jargon. They should use easy words and short sentences. They should think about using different ways to tell different types of people’. That got us a score of 85.2 – ‘Easy to read. Conversational English for consumers,’ which isn’t too bad in that it’s got us over the NCBI’s threshold of a reading age of 11-12 years, but that’s still two years older than the average UK adult’s reading age.