Positive and negative aspects of participation in illicit drug research: Implications for recruitment and ethical conduct

Abstract

Improved understanding of incentives and barriers to drug user research participation may improve study recruitment, retention and outcomes and enhance the ethical acceptability of illicit drug research. In Melbourne, Australia during 2001–2004, 507 injecting drug users were recruited from Needle and Syringe Programs and asked to nominate the ‘best’ and ‘worst’ things about research. Commonly reported positive aspects of drug research were its capacity to provide valid information about drug use (39%), the potential to improve drug-related policies and practices (20%) and benefits to the community (14%). Reported negative aspects of drug research included concerns about lack of, or negative impact of research findings (31%), and personal dislikes about research projects, such as discomfort (27%), inconvenience (21%) and risk (9%). IDU may participate in non-intervention research because of expected benefits for themselves and others, and may be discouraged from involvement by personal discomfort, inconvenience and risk, or a perceived lack of impact or benefit. To enhance recruitment to non-intervention research and fulfil ethical obligations investigators should (1) actively consider how best to minimise the IDU-defined negative aspects of research, and (2) clarify for prospective participants the intended impact of the research on policy and practice.

Introduction

In public health and clinical research that targets ‘hidden’ populations, such as illicit drug users, project success depends on adequate participant recruitment and retention. The challenge of recruiting illicit drug users to research may be addressed through a greater understanding of participation incentives and barriers.

Previous studies of clinical intervention and cohort research populations show that research participation is motivated by a variety of incentives, such as: information access (Smith et al., 1998); economic gain (Cunny & Miller, 1994); desire to help others and contribute to science (Hayman, Taylor, Peart, Galland, & Sayers, 2001; Roberts, Warner, & Brody, 2000; Wright, Klee, & Reid, 1998); expected therapeutic benefits (Brody & Waldron, 2000; Cunny & Miller, 1994); and interest in the research topic (Farre, Lamas, & Cami, 1995). There are also negative factors, such as inconvenience, risk and discomfort from study procedures that may serve as barriers to participation or reduce retention and protocol adherence in intervention and cohort studies (Ammassari et al., 2002; Cunny & Miller, 1994; Hayman et al., 2001). These findings have informed the development of strategies to enhance drug user recruitment, retention and adherence in clinical research (see Cottler, Compton, Ben-Abdallah, Horne, & Claverie, 1996; Meyers, Webb, Frantz, & Randall, 2003; Simoni, Frick, Pantalone, & Turner, 2003).

In contrast, there has been little consideration of factors that influence drug user participation in ‘non-intervention’ research (e.g. community-based epidemiological research, descriptive surveillance studies, attitudes surveys/polls, etc.). These types of studies, often conducted with non-clinical populations of drug users, are common in the drug and alcohol field and are important for drug policy and program development. Recruitment to these studies is particularly challenging where the target population is not in routine contact with treatment or other institutions (Braunstein, 1993), and thus may be less willing or used to discussing sensitive personal information (Lee, 1993).

The only published study in this area has shown that injecting drug users (IDU) participate in non-intervention research for a variety of reasons, such as: economic gain; citizenship; altruism; personal satisfaction; drug user activism; receipt of information and other assistance (see Fry & Dwyer, 2001). The current paper continues our Centre's ongoing work on this topic by investigating the self-reported positive and negative aspects of research participation for the IDU participants of a national drug trend surveillance study.