In this paper we discuss what constitutes ethical research for people with PMLD. We describe the work of university ethics committees and suggest that people with PMLD and those involved in their care have not been given due consideration in mainstream research ethics regulations. Readers are invited to share their thoughts about what an ethical research project looks like for people with PMLD

Bush, T

Parfitt, A

Read, S

Simmons, B

ResearchSPace - Bath Spa University

Simmons, B., Read, S., Parfitt, A., and Bush, T. (2022) 'What constitutes 'ethical' research for people with PMLD? A call for reader responses’, PMLD Link, 34.3 (103), pp. 38-40.This is a copy of the final version of an article published in PMLD Link (ISSN 2042-5619) in January 2023 reproduced with permission from the publisher. For more information about this issue please go to https://www.pmldlink.org.uk/the-journal/winter-issue/  ResearchSPAce http://researchspace.bathspa.ac.uk/ This published version is made available in accordance with publisher policies. Please cite only the published version using the reference above. Your access and use of this document is based on your acceptance of the ResearchSPAce Metadata and Data Policies, as well as applicable law:-https://researchspace.bathspa.ac.uk/policies.html  Unless you accept the terms of these Policies in full, you do not have permission to download this document. This cover sheet may not be removed from the document. Please scroll down to view the document.  38 Winter 2022,  Vol. 34  No.3  Issue 103  What constitutes ‘ethical’ research for people with PMLD? A call for reader responses   Ben Simmons, Stuart Read, Anne Parfitt, and Tanvir Bush  In this paper we discuss what constitutes ethical research for people with profound and multiple learning disabilities (PMLD) We describe the work of university ethics committees and suggest that people with PMLD and those involved in their care and support have not been given due consideration in mainstream research ethics regulations. Readers are invited to share their thoughts about what an ethical research project looks like for people with PMLD. What is research? W hilst the meaning of ‘research’ has been debated, it is commonly defined as the process by which we develop and share new insights of relevance to society (HEFCE et al., 2011, OECD, 2015). These insights are vast in range and might include discoveries such as about how the brain works, the development of pharmaceu cal treatments to improve mental health, and the advancement of technology in neonatal incubators. Such medical research is high‐profile in the UK, and the public imagina on is captured through calls for dona ons (e.g. through cancer research TV adverts) and celebra ons of drug trials in the media (e.g. the Guardian’s 2022 ar cle describing the latest Alzheimer’s drug hailed as ‘historic moment’).  Medical research is important, but it is just one field of inquiry, and universi es serve to develop insights into a range of topics that can benefit society. For example, social science research can evaluate approaches to improving how hospital staff communicate with pa ents who cannot use speech, or develop insights into parental opinions on controversial topics such as sex educa on in special schools. Humani es research can uncover the historical reasons why people with learning disabili es were placed in ins tu ons, while arts research can produce artefacts that tell stories about disability ac vism. Regardless of the topic being explored, all research is bound by principles of ethics. But, what does it mean for a project to be ethical?  What are research ethics? T he word ‘ethical’ is some mes used in our society to indicate whether or not something is morally right. For example, businesses such as shops and restaurants some mes claim to ethically source their products. This can mean a number of things. It can mean that the products are not tested on animals, that the people who make products have fair working condi ons and are not vic ms of modern slavery, and that the crea on and transporta on of products are environmentally friendly. The reputa on of some high street businesses revolves around the extent to which they are ethical – ethics are the core of their ‘brand value’.  UK universi es pride themselves on conduc ng ethical research, and each project has to be approved by a Research Ethics Commi ee before data collec on begins. Whilst the process can vary from project to project, it typically involves a researcher wri ng an ethics report that outlines the design of the study (e.g. who will be involved, how the data will be collected, analysed and stored, how risks to par cipants will be mi gated, etc). The job of a Research Ethics Commi ee is to decide whether a project can go ahead, or whether it should be modified to sa sfy research regula ons. This is an important process as it serves to ensure that all projects minimise risk of harm to both par cipants and the researcher.   The need for research ethics approval emerged against a backdrop of – quite frankly – dreadful studies that showed li le care for the lives of par cipants. Textbook examples of unethical research include the Tuskegee Study which inves gated the long‐term effects of untreated syphilis on 600 African American pa ents. During the Tuskegee Study, diagnosis and treatment was deliberately withheld from the pa ents so that researchers could study the progression of syphilis over me (CDC, 2021). Examples such as this led to the crea on of formal scien fic ethical guidelines such as the Belmont Report (1978), and over the last forty years a plethora of regula ons and guidelines have been published to minimise harm during the research process.     39 Winter 2022,  Vol. 34  No.3  Issue 103  How are research ethics contested?  O n the surface, research ethics appear straigh orward. The principle of minimising harm to research par cipants intui vely feels like the right thing to do. However, when we scratch beneath the surface to examine real world examples, we realise that ethical decisions are complex and problema c. For example, informed consent is o en seen as a benchmark of an ethical project. Informed consent means that the par cipants know exactly what they are signing up for, that they can read and understand a research project informa on sheet (which may consist of technical or legal jargon), and consent to par cipate by signing a form. Whilst some par cipants are very capable of reading and signing such documents, it is not altogether clear how people with PMLD can par cipate in this process. For people with PMLD under the age of 16, a parent or guardian can sign a consent form. Even though this may sa sfy a university’s Research Ethics Commi ee, it completely overlooks the wishes of people with PMLD. For researchers who deny that people with PMLD have any perspec ve on par cipa ng in projects, this may not be an issue, but for others who seek to honour the agency and experiences of people with PMLD this is simply not good enough and dehumanises the ‘par cipants’ of research. An alterna ve model is to seek what is known as ‘assent’, that is, to honour the expressions of approval and agreement provided by people with PMLD during the research process, even though they cannot legally consent to par cipate. However, whilst informed consent is almost universally acknowledged as a benchmark of ethical research, the processes by which we seek assent is neither regulated nor universally acknowledged, resul ng in inconsistent ethical prac ces.  What the example above demonstrates is that a cornerstone of ethical research – seeking informed wri en consent – is not a process which all groups can par cipate in. Does this mean that research should only include par cipants who are literate? Should research focus only upon those who have the privilege of being fluent in wri en language? We argue that this would result in a narrow body of knowledge that only reflects privileged groups. As readers may recognise, this problem extends beyond people with PMLD. It might, for example, exclude people whose first language is not English, or parents without a university degree who are less familiar with the jargon of higher educa on. One solu on to the problem is to simplify the language used in project informa on sheets and consent forms, such as through use of ‘easy read’, accessible materials. While simplifying language may go some way to redressing barriers, it s ll leaves unaddressed how people with PMLD can par cipate in the process.   Research ethics become even more complex when we take into account the different philosophical posi ons that inform debate. One branch of ethics is ‘deontological ethics’, which means that there are universal ethical principles or rules for everyone about what is right and wrong. Informed wri en consent is currently one of these rules ‐ everyone should be able to read informa on and decide whether or not they want to par cipate in research. A contras ng posi on is consequen alist ethics. Consequen alism holds that we should not follow general rules (an ethical code of conduct), but instead design studies based on whether or not they will result in good outcomes for the groups under inves ga on. If people with PMLD were par cipa ng in research then the research should benefit the par cipants directly, or people with PMLD more generally. A third ethical posi on is rela onal ethics. According to Ellis (2007) rela onal ethics requires that researchers are not objec ve in their research but act from their ‘hearts and minds’ (p. 3), that they acknowledge interpersonal bonds and take responsibility for ac ons and their social consequences. Research informed by rela onal ethics ‘recognizes and values mutual respect, dignity, and connectedness between researcher and researched, and between researchers and the communi es in which they live and work’ (Ibid, p. 4). This kind of research has been influen al where par cipants are judged to be vulnerable, or in contexts where the responsibility of caring is already priori sed, such as nursing research (Hammersley and Traianou 2012). Instead of priori sing informed consent, which is an agreement that takes place before the research takes place, rela onal ethics suggests that researchers maintain a good rela onship with par cipants during and a er the research. What these different philosophical posi ons on ethics ul mately demonstrate is the complexity of ethical decisions, and how researchers should be mindful of a range of issues that cannot always be prescribed in advance. For people with PMLD, it means we have to consider not simply formal rules, but the perceived benefits of the research as well as the rela onships that develop during the course of a project. Given the lack of research about what cons tutes an ethical project for people with PMLD, we invite readers to get in touch and help shape ethical debates.  Call for reader responses A s a research group, we agree that all research projects should obtain research ethics approval and minimise risk of harm to par cipants and society at large. However, research ethics guidelines are typically created by universi es and professional bodies rather than the research par cipants themselves. In other words, academic organisa ons decide what cons tutes an ethically or morally right research project, at the expense of listening to people who are the actual subjects of research (i.e. the people being researched). Modern  40 Winter 2022,  Vol. 34  No.3  Issue 103   Get Involved   All contributions to our journal PMLD Link are welcomed. Share your ideas about future topics for the journal or make suggestions of authors we might approach. If you want to write for us yourself, it’s easier to get your experiences and thoughts into print than you might think. We also welcome shorter items about new resources, books, websites, events, courses or news in general.   PMLD Link readers include family members, carers and professionals working across child and adult services for people with PMLD. To see typical contributions, look at some recent back issues. You can download a free copy of PMLD Link from www.pmldlink.org.uk or sign up as a ‘Guest’ to view back issues of our journal.   Our Editors are keen to support new writers. We will provide support at every stage - from the germ of an idea through to the finished piece in print. Articles are usually between 1- 4 pages of A4 (about 350-1500 words). They can be very practical in nature or have a more research /academic approach. We are very flexible in our requirements! To see our Guidelines for Writers visit the ‘Get Involved’ pages on our website www.pmldlink.org.uk.   For more information contact info@pmldlink.org.uk research ethics takes the non‐disabled experience to be the norm, and by doing this, devalues the interests of the people who are the subjects of research, including people with PMLD. We wish to flip the narra ve here. We call on readers to think about what would cons tute an ethical research project for people with PMLD and those involved in their care. As a research team, we cannot abandon university ethics, but we can enrich it by crea ng a code of prac ce that reflects the values of the communi es we engage with, such as people with PMLD. We invite readers to engage in this debate and we welcome emails on the topic. What do you think an ethical PMLD research project involves? What should we do to make a project more ethical, and what should we avoid? Is it enough to simply minimise risk, or does all research involve an element of risk? If you have any ques ons, sugges ons, disagreements and comments, please get in touch with us ‐ we welcome all opinions on this controversial topic.   Contact Details  Dr Ben Simmons, Reader in Inclusive Education and Disability Research b.simmons@bathspa.ac.uk  Dr Stuart Read, Research Fellow s.read@bathspa.ac.uk  Dr Anne Parfitt, Research Fellow  a.parfitt@bathspa.ac.uk  Dr Tanvir Bush, Research Fellow t.bush@bathspa.ac.uk  We Are The People research team, School of Education, Bath Spa University  References  CDC (2021) The Tuskegee Timeline. Retrieved from https://www.cdc.gov/tuskegee/timeline.htm#print 07/10/2022  DoHEW (1979) The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Retrieved from https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html 07/10/2022  Ellis, C. (2007) Telling Secrets, Revealing Lives: Relational Ethics in Research With Intimate Others. Qualitative Inquiry, 13(1), 3–29.  Guardian (2022) Success of experimental Alzheimer’s drug hailed as ‘historic moment’. Retrieved from https://www.theguardian.com/society/2022/sep/28/alzheimers-disease-progression-slowed-by-new-drug-lecanemab 07/10/2022  Hammersley, M. and Traianou, A. (2012) Ethics in Qualitative Research: Controversies and Context. London: Sage.   HEFCE (2011) REF 2014: Assessment framework and guidance on submissions. HEFCE, Stoke Gifford  OECD (2015) Frascati Manual 2015: Guidelines for Collecting and Reporting Data on Research and Experimental Development, The Measurement of Scientific, Technological and Innovation Activities, OECD Publishing, Paris  

What constitutes 'ethical' research for people with PMLD? A call for reader responses

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What constitutes 'ethical' research for people with PMLD? A call for reader responses

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