scholarly journals Doing Research with Vulnerable Populations: The Case of Intravenous Drug Users

2018 ◽  
Vol 5 ◽  
Author(s):  
Blake Murdoch ◽  
Timothy Caulfield

This review article considers ethical concerns when doing research on potentially vulnerable people who inject drugs (PWID) in a Canadian context. TheTri-Council Policy Statement: Ethical Conduct for Research Involving Humansbroadly addresses many of the traditional ethical principles of research on vulnerable persons, but does so at the cost of clarity and precision. Vulnerability is contextual rather than absolute. When doing research with vulnerable persons, informed consent should be obtained from an independent person, and comprehension should be checked using questioning. Participants can be vulnerable due to many factors, including addiction, chronic disease, socioeconomic and racial status, and lack of education. The ability of PWID to give informed consent can be compromised by undue influence or intoxication, but existing research shows that neither the mode nor the magnitude of compensation has a significant effect on new rates of drug use. Compensation can also help dispel the therapeutic misconception. Intoxication rather than undue influence is the main concern when obtaining informed consent from PWID. The stigmatization of PWID as incapable of consent should be avoided. Paternalistic exclusion from research can harm PWID and exacerbate their vulnerability by reducing our knowledge of and ability to specifically treat them. As such, we must collect better data about the effects of research ethics policies. Studies to this effect should focus on experiences, perspectives and needs of potentially vulnerable research participants. Research ethics boards in Canada should adopt an evidence-based approach when applying discretionary power to proposals for clinical research.

Author(s):  
Patrick J. Fahy

Ethics review of research involving humans is intended to protect human dignity by balancing harms and benefits. The foci and methods used in reviews vary nationally, but tend, as in Canada, to address core principles including free and informed consent, privacy and confidentiality, inclusiveness and fairness, and the rights of dependent subjects. Under examination in relation to the policy that governs research ethics in Canada, the Tri-Council Policy Statement (TCPS, 2005), these principles admit numerous exceptions, a fact that, as shown by a study reported here, is better understood by those actually engaged in research than those who are not. The implications of these findings, and the specific priorities of non- Canadian researchers (especially those in developing nations), are described and discussed.


Author(s):  
Steve Bruce

It is right that social researchers consider the ethical implications of their work, but discussion of research ethics has been distorted by the primacy of the ‘informed consent’ model for policing medical interventions. It is remarkably rare for the data collection phase of social research to be in any sense harmful, and in most cases seeking consent from, say, members of a church congregation would disrupt the naturally occurring phenomena we wish to study. More relevant is the way we report our research. It is in the disparity between how people would like to see themselves described and explained and how the social researcher describes and explains them that we find the greatest potential for ill-feeling, and even here it is slight.


2019 ◽  
Vol 14 (5) ◽  
pp. 475-478
Author(s):  
Matthé Scholten ◽  
Jochen Vollmann

In this case commentary, we analyze ethical concerns that were raised in response to an interview with a woman with bipolar disorder who was under involuntary commitment. We focus on competence and voluntariness as two prerequisites for valid informed consent. We recommend that judgments of competence be based on whether prospective research participants sufficiently possess certain decision-making abilities. Based on this functional approach, we argue that manic symptoms need not undermine competence and that, even if we were to assume that the research participant became incompetent during the interview, this would not invalidate her consent retroactively. It would, however, compromise her ability to revoke her consent. We furthermore show that obtaining additional proxy consent for research participation may compromise the autonomy of service users who are competent to consent. Then we turn to the issue of voluntariness. Arguing that neither the great strength nor the external etiology of a desire compromises voluntariness, we propose that the voluntariness of a decision instead depends on whether the decision-maker endorses it on reflection. The researchers disclosed that prospective research participants’ decision about study participation would have no influence on the duration of the commitment or the quality of care. We contend that because of this neither coercion nor undue influence was exerted in the informed consent process. Nevertheless, there is an increased likelihood of perceived coercion and undue influence under conditions of involuntary commitment, and we close by suggesting some safeguards to prevent this.


SAGE Open ◽  
2020 ◽  
Vol 10 (1) ◽  
pp. 215824402091454
Author(s):  
Sukhee Ahn ◽  
Geum Hee Jeong ◽  
Hye Sook Shin ◽  
Jeung-Im Kim ◽  
Yunmi Kim ◽  
...  

This study, conducted in the Republic of Korea, analyzed nursing faculty members’ knowledge of and attitudes toward research ethics according to their characteristics and the institutional environment. A survey was conducted from April 24 to July 23, 2017. The participants were 210 nursing professors from 57 universities in Korea. The survey questionnaire gathered information on participants’ characteristics, their knowledge of and attitudes toward research ethics, and their perceived training needs. A relatively low difficulty index was found for knowledge items dealing with conflicts of interest (0.66), copyright (0.65), and plagiarism and duplicate publications (0.17) than for the other six items. Of the 12 items assessing attitudes toward research ethics, use of a plagiarism-checking program and reviewing manuscripts from members of one’s own research group had the lowest scores. The knowledge level of participants whose institutions provided a plagiarism-checking program was higher than those whose institutions did not. Former group also showed better attitudes toward research ethics. High-priority training needs were obtaining institutional review board (IRB) approval, writing informed consent forms, and obtaining informed consent for studies on children and pregnant women. A more intensive training program for nursing faculty is required on specific topics, including conflicts of interest, copyright, plagiarism, duplicate publications, IRB approval, and informed consent. Furthermore, all nursing institutions in Korea should provide a plagiarism-checking program to faculty members.


Addiction ◽  
2004 ◽  
Vol 99 (12) ◽  
pp. 1565-1576 ◽  
Author(s):  
Lilani Kumaranayake ◽  
Peter Vickerman ◽  
Damian Walker ◽  
Syiatsaslav Samoshkin ◽  
Vladimir Romantzov ◽  
...  

Addiction ◽  
2010 ◽  
Vol 105 (2) ◽  
pp. 319-328 ◽  
Author(s):  
Lorna Guinness ◽  
Peter Vickerman ◽  
Zahidul Quayyum ◽  
Anna Foss ◽  
Charlotte Watts ◽  
...  

2021 ◽  
pp. 39-59
Author(s):  
Kevin D. Haggerty

This chapter accentuates some of the reasons why crime ethnographies can face difficulties with the ethics review process, including prominent issues relating to informed consent, risk and harm, anonymity, and criminal behavior. Universities in most Western countries have established research ethics boards over the past twenty years responsible for assessing the ethical conduct of research. Qualitative research can fit poorly into the largely positivist ethics framework, resulting in an often-frustrating situation for ethnographers seeking to move ahead with their research. One paradox of this situation is that the ethics process itself seems poised to give rise to a subset of academic deviants in the form of crime ethnographers who may find that they are obliged to circumvent or disregard some formal ethical strictures in order to engage in ethnographic practices that otherwise seem uncontroversial or even innocuous.


Author(s):  
David Clark

In this chapter, the author argues for a strict interpretation of research ethics when conducting online research, and in the process, discusses these four ethical categories: the presence of the researcher in the researched context, the blurring lines between “public” and “private,” informed consent and confidentiality. In making his argument, he draws on examples from a case study in which he examined an organization that meets both online and face-to-face.


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