Introduction

This chapter describes the decision making of a purposively sampled group of oncology patients about taking part in a randomised controlled trial (RCT). The data presented here was gathered for a NHS-sponsored PhD project, one aim of which was to feed back to local clinical researchers and Research Ethics Committees in order to improve the process for future patients.

The chapter, therefore, is structured around the idea of choice, of exactly what participants understood their choices to be, and the extent to which they felt free to choose. This has associated implications for the ethical requirement of voluntariness in informed consent. Features of the process that they felt made the decision more or less difficult will be covered as will variances in attitudes to the risks contingent in research involvement and the way in which information about risk was used. The roles of self-interest and altruism in deciding whether to agree to take part in research were discussed, and are reported here.

Terminology

Various terms are used to describe people who agree to take part in medical research. ‘Subject’, ‘respondent’, ‘participant’ or ‘patient’, for example, and collective terms such as ‘cohort’ and ‘control group’, all of which are illustrative of researchers’ attitudes towards the people they are researching. The smallscale study reported here was qualitative and largely inductive at both the data collection and analysis stages. Focus groups were used to encourage participant generated themes within the theoretical framework of the research. Furthermore, the viability of the study was highly dependent on the goodwill of those who were invited to take part. (Lack of direct benefit to participants who were or had recently been seriously ill meant that no telephone follow-up took place.) Those who did come to the discussions were explicitly encouraged to express their thoughts and recollections. In light of this, they were consistently referred to as ‘participants’, as this term adequately captures the sense of a respectful representation of individuality. However, the literature on the subject included only a small number of studies where similar conditions applied (Searight and Miller, 1996; Featherstone and Donovan, 1998; Snowdon et al, 1998; Ellis et al, 1999; Donovan et al, 2002). The majority were larger, often questionnaire surveys (Maslin, 1994; Sugarman et al, 1998) or administered questionnaires (Kemp et al, 1984).