“People using drugs are expecting stigma and shame. You have to be extremely careful not to slip up and make them feel uncomfortable.”
“You’re interviewing people who should be in prison, you should denounce them to the authorities.”
“Not all people using drugs are vulnerable, this assumption is so stigmatising!”
“Sharing a story anonymously can make people look shady, this can do more harm than good.”
In 2022-2023, our team of researchers from the University of Bristol and Transform Drug Policy received seedcorn funding from the Brigstow Institute for a project exploring drug policy, ethics and storytelling in Bristol. The quotes above are some of the challenges that were raised in a workshop we ran to critically explore the opportunities, and ethical and methodological challenges faced when gathering and sharing real-life stories about drug use and dealing. We then developed Best Practice Guidelines for Research on Drugs Issues, which have been approved and adopted by the University of Bristol Ethics Research Committee (UERC), who expressed they would be very useful. In this blog we discuss this process and how we hope it will open up future research with people affected by drugs and drug policy.
Thanks to the Brigstow Institute’s generous funding for interdisciplinary and co-produced research we set out to explore how ethical storytelling can be used to inform how we can live well with drugs in our communities. Emerging evidence is demonstrating the benefits of harm reduction programmes and regulatory alternatives to prohibition, we think that universities in the United Kingdom ought to be producing new research and knowledge which integrates different voices affected by drugs and drug policy in this quickly evolving landscape.
This project draws on the experience of Transform’s Anyone’s Child: Families for Safer Drug Control project. Anyone’s Child is a group of families telling the real, human stories of people who have been stigmatised, criminalised and lost loved ones because of drug prohibition. The families involved have described feeling empowered after telling their stories to researchers, politicians, the media and the public, as part of their campaigning work to bring about a just, effective and safer system of legal regulation for all drugs. It has enabled them to dignify their loved ones and to regain control over the narratives of their experience, which, in some cases, have been silenced or denied for years, out of fear and stigmatisation.
Nevertheless, doing ethical research on drugs and ensuring no harm to participants with experience of drugs and drug policy had long been identified as a challenge by Transform. Anyone’s Child family members have experienced unethical and exploitative interview practice from journalists which has produced exhaustion, discomfort and pain. Additionally, we have had countless informal chats with researchers from different institutions about important projects not happening because they were unable to secure ethical approval from research institutions.
We decided to run a workshop with academics and practitioners who work on drug policy and people with lived experiences of drug-related issues in Bristol, to discuss how best to navigate some of these difficulties. We first heard from some of the Anyone’s Child family members who recounted their experiences of being the object of research. They described things to avoid, as well as positive research interview experiences that they have had, and outlined practical steps researchers can take to support them. We also heard from UoB academics who have worked on drug-related issues in different contexts in the UK, Kenya, Mexico and Colombia, who stressed the importance of long-term engagement with participants, using co-produced and creative methodologies to facilitate openness, and introducing self-care practices to protect both participants and researchers. We included break-out groups to really dig into the following challenges: securing consent from people who are actively using drugs; encouraging participation with people from marginalised backgrounds; safeguarding participants and not ‘outing’ people as people using or selling drugs; and finding the balance between anonymity and humanising people.
The key issues raised included the importance of consent being an iterative process; taking great care to use appropriate language so as not to produce feelings of shame; not reducing research on drugs to illegal activity; and how to ensure participants are fairly reimbursed for their time and contributions.
The workshops attendees felt that often, potential research participants involved in illegal drug markets were not treated the same by Research Ethics Committees (RECs) as other participants, as RECs are not immune from replicating stigma, prejudice and moralising judgements, whether consciously or unconsciously, which affects the scope, processes and potential impact of research on drugs. Although experiences vary, researchers discussed the negative impact on researchers of being required to provide “additional safeguards” to ethics applications and being made to carry out time-consuming rebuttals to rejected ethics applications. Many of these decisions were considered unfairly risk-averse by the workshop attendees.
Participants felt that research on illegal drugs could instead draw on harm reduction principles and best practice. Harm reduction is an alternative approach to zero tolerance or ‘drug free’ approaches that ‘refers to policies, programmes and practices that aim to minimise the negative health, social and legal impacts associated with drug use, drug policies and drug laws’. It is based on the recognition that many people who use drugs are unable or unwilling to abstain, and acknowledges that many people who consume drugs often do so to treat or endure serious psychosocial or emotional problems. Importantly, harm reduction focuses on working with people without judgement, coercion, discrimination, or requiring that people stop using drugs as a precondition of support.
Following the workshop, we collated the findings and produced some guidelines and recommendations. This is intended to guide researchers and academics working on these issues across different disciplines when they are submitting university ethics applications, facilitate future ethical research on drugs issues and destigmatise potential research participants. We also hope that they can assist Research Ethics Committees to have a standardised, cross-disciplinary approach to assess and advise research on drugs and drug policy issues.
We are delighted that these guidelines and recommendations have been approved by the University of Bristol Ethics Research Committee. We strongly believe that engagement with people’s lived experiences through their stories enables us to challenge many of the preconceptions and assumptions that surround the drugs debate, and encourage broader discussion of the policy implications for the populations upon whom they impact most, but who are routinely marginalised from public discourse. Additionally, conducting research with these populations can advance knowledge about what underlies participation in illegal drug markets and the impacts of drug policies on marginalised groups, while contributing to the development of interventions and policy that can minimise harm. Hopefully, these guidelines will now contribute to important and much needed research into these livelihoods, economies and experiences and will promote ethical research practices which genuinely protects researchers and participants.
