Doing Research with Vulnerable Populations: The Case of Intravenous Drug Users (original) (raw)
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The ethics of doing research with young drug users
The Australian Sociological Association Annual …, 2011
Investigations into young people with problematic substance use raise complex issues for institutional ethics committees. The inclusion of people under 18 years old in research requires significant work in preparing applications that will meet the rigorous criteria that human research ethics committees (HREC) operate within (Bessant 2006). Additionally, researching people’s experiences of drug use is fraught with all sorts of ethical conundrums because of its potential legal implications (Fitzgerald & Hamilton 1996; 1997; Moore 1993). This paper will discuss some of the complexities of doing research with these populations using my research on the life experiences of young people with problematic substance use as a case study. After I introduce the study, I explain how the philosophical paradigm of ‘ethics’ translates into practice. Young people and ‘informed consent’ are discussed; and the paradox of ‘confidentiality’ when researching illicit activity is explored. I then use the issue of participant payment to illustrate how the policies of frontline services and HRECs are not always in agreement. Following this, I examine the lack of ethical guidelines that protect the researcher and the implications of this lack of regulation. Finally, I explain how I have negotiated these competing definitions and, most importantly, maintained a research practice that respects and benefits the young people participating.
Ethical Issues in Research Involving Participants With Opioid Use Disorder
Therapeutic innovation & regulatory science, 2018
In the current epidemic of opioid use disorders, there is both a scientific and ethical imperative to develop effective medical and behavioral treatments for opioid addiction. Research in subject populations with active and ongoing drug addictions bring unique ethical considerations and challenges. Sponsors, researchers, and institutional review board (IRB) members should be familiar with these unique ethical and medical issues as they design, review, and conduct research planned for this population. Issues include those of informed consent and decision-making capacity of research participants, compensation for participation and concerns about undue inducement, forces that threaten the voluntary nature of research participation including the scarcity of available drug treatment programs, and ensuring that participants are aware of and understand risks that may continue after research participation such as increased risk of overdose after research-mandated drug abstinence. This manus...
Addressing ethical challenges in HIV prevention research with people who inject drugs
Journal of medical ethics, 2016
Despite recent advances in HIV prevention and treatment, high HIV incidence persists among people who inject drugs (PWID). Difficult legal and political environments and lack of services for PWID likely contribute to high HIV incidence. Some advocates question whether any HIV prevention research is ethically justified in settings where healthcare system fails to provide basic services to PWID and where implementation of research findings is fraught with political barriers. Ethical challenges in research with PWID include concern about whether research evidence will be translated into practice; concerns that research might exacerbate background risks; and ethical challenges regarding the standard of HIV prevention in research. While these questions arise in other research settings, for research with PWID, these questions are especially controversial. This paper analyses four ethical questions in determining whether research could be ethically acceptable: (1) Can researchers ensure th...
Vulnerable participants in health research: methodological and ethical challenges
Journal of Social Work Practice
Ethical guidelines for conducting research are embedded in the Helsinki Declaration of 1964. We contend that these abstract and intentionally universal guidelines need to be appropriated for social and healthcare research, in which purpose and methods often deviate from medical research. The guidelines appear to be instrumental and over-simplistic representations of the often ‘messy’ realities surrounding the research process that is often guided by relational and local negotiations of ethical solutions. Vulnerable participants, for instance, challenge both professional and research ethics, leaving both professionals and researchers in ethical and moral dilemmas. In this article, we specifically focus on the methodological challenges of obtaining informed consent from drug users and terminally ill cancer patients in our PhD research. The question is how to illuminate the needs and problems of vulnerable patients and – at the same time – respect their integrity without exposing them ...
In 2011, the Australian National Health and Medical Research Council (NHMRC) initiated an inquiry to determine whether there is a need for expanded ethical guidance in the form of a discrete guidance document for alcohol and other drug (AOD) research.An issues paper was developed to frame the inquiry.AOD researchers,Human Research Ethics Committees and others were invited to discuss whether there are distinctive ethical issues facing researchers and Human Research Ethics Committees in the AOD setting. Based on the public submissions, the NHMRC recommended that no AOD research-specific guidance is required.The inquiry and the NHMRC decision were not widely publicized, and we feel there is a need for further discussion. In order to do so, we have analysed the public inquiry submissions and described the central themes. Few submissions in the inquiry explicitly agreed AOD research warrants a specific guidance framework. Most were concerned that the NHMRC issues paper unfairly targeted people who use drugs as complex research participants.The inquiry highlights tensions around research governance and ethics review boards dealing with illicit and stigmatised behaviours.While we agree that a specific guidance framework for AOD research is not needed and could potentially be harmful and restrictive,we are concerned that the wholesale rejection of a guidance framework has closed the door to much needed debate.There remains, we argue, a need for alternative strategies and tools to support ethical research, inform and streamline institutional ethics approval, and engage and protect participants. [Olsen A, Mooney-Somers J. Drug Alcohol Rev 2014;33:637–42]
The American journal of bioethics : AJOB, 2017
Central to addiction is a complex interplay between the erosion of the will to refrain from harmful behavior such as psychotropic drug use and how changes in human brain neurocircuitry continuously orient people toward pursuing the given behavior. In the addictive state, therefore, personal desires and habits increasingly denude and/or limit rational control of behavior and choices. Since autonomy with its undercurrent of competence and attendant garb of accountability requires mental stability (Afolabi 2015a), it is morally difficult for addicts to voluntarily consent to addiction research. Steel and colleagues (2017) partly acknowledge this idea in the context of opioid-dependent research, but their proposal attempts to frame the issues beyond this conceptual locale. For supervised injectable opioid assisted treatment (siOAT), they argue that the quandaries are better engaged using the language of inequities and the literature on "third-world" nonexploitation. However, this has a limited scope largely because it engages only a part of the series of distinct events that generate and are associated with the problem ab initio.
Background: This article examines the ethical implications of using respondent-driven sampling (RDS) to conduct HIV behaviour surveillance among injection drug users (IDUs) in Chicago. Ethnographic inquiry illustrates how the design and implementation of RDS invites if not promotes manifold violations of federal guidelines governing human research subject protections. Methods: Post hoc structured interviews with approximately 13% (n = 70) of the behaviour surveillance sample (N = 529) focused on how RDS's " dual incentive " structure affected participants' social, economic, and cultural milieu. Triangulated methods include interviews with owners of 20 " shooting galleries " , unofficial and illegal locales where IDUs congregate and 400 h of traditional ethnographic observation of individual IDUs and IDU networks. " Consensus analysis " allows identification of key cultural domains that define the RDS coupon market. Results: The study reveals the power of RDS to foment a stratified market of research participation that reinforces pre-existing economic and social inequalities among IDUs. Participants co-opted RDS to develop various " underground " revenue-generating modalities that produced differential risks and benefits among participants. Deleterious outcomes include false advertising regarding the study's risks and benefits, exploitation of relative economic deprivation, generation of sero-discordant social networks, and interpersonal and organised conflict, coercion, and violence. Conclusion: Although RDS may involve serious ethical violations it remains the best available means for accruing a representative sample of hidden populations. It is critical, however, to supplement RDS with research into (1) the subjects' cultural, social, economic, and political contexts, (2) the potential human subjects violations that participants experience, and (3) how these two issues might affect data integrity and interpretation.
The Issue of Consent in Research that Administers Drugs of Addiction to Addicted Persons
Accountability in Research, 2008
In addiction, impaired control over drug use raises questions about the capacity of addicted persons to consent to participate in research studies in which they are given their drug of addiction. We review the case for doing such research, and the arguments that addiction does, and does not, prevent addicted persons from consenting to such research. We argue for a more nuanced view that acknowledges that while in some situations addiction impairs decision-making capacity, it does not eliminate such capacity. We conclude with some suggestions for recruiting addicted subjects and designing experiments in ways to obtain free and informed consent.