Introduction

This chapter seeks to identify and discuss ethical issues in the meaningful involvement of service users as co-researchers. Just because a researcher says that they are involving service users as co-researchers, it does not follow that this is how it is experienced by service users. It is also worth stating that I believe such involvement of service users will not only enhance the quality of the research but is more likely to lead to better outcomes for service users. While there is a growing evidence base for this (Brady, 2020; Lovell-Norton et al, 2020; Moulam et al, 2020), there are also examples of when such research set out with good intentions but became unstuck as the partnership between service users, practitioners and academics broke down (Natland, 2020).

All researchers, including service user co-researchers, possess a moral perspective about what is right and what is wrong. These views may be influenced by their life experiences and interactions with others, resulting in individualised moral beliefs set within a socio-historical context. While there is large amount of agreement about what is right and wrong, and in social work we would particularly point to principles like human rights and social justice, the application of such principles in particular situations is both contested and contestable. This chapter begins by identifying key ethical research frameworks, and then considers potential ethical issues that can arise during the research process.

Ethical perspectives in research

Contemporary discussions on research ethics usually begin with the trial of Nazi doctors after the Second World War that led to the Nuremberg Code (1947), which identified ten ethical key principles including consent and avoidance of risk to research participants. However, the mere existence of ethical codes has not prevented further examples of unethical research. One of the best known of these is the Tuskegee Syphilis Study of 1932–1972 (Brandt, 1978), wherein 400 African American men were not treated for syphilis even though a treatment was available. Instead, they were studied over a prolonged period to track the progression of the disease. More recently, in the UK, there was also the removal and retention of human tissue, including children's organs, for research at the Alder Hey Hospital (Redfern, 2001) without the parent's consent.