Volume 19, Issue 10, October 2019, Page 103-105.

Research Ethics, Volume 18, Issue 4, Page 265-280, October 2022. Concerns around comprehension and recall of consent information by research participants have typically been associated with low health and research literacy levels. In genomics research, this concern is heightened as the scientific and ethical complexities of genetics research, such as biobanking, genetic susceptibility, data sharing, and incidental findings may be more difficult for potential research participants to understand. However, challenges to research participants’ comprehension of consent information may be compounded by (...) factors beyond health and research literacy levels. To identify factors that may impact research participants’ understanding and recall of consent information, we designed a qualitative study to explore whether participants enrolled in a tuberculosis genetics study in Cameroon understood the objectives of the study, the risks and benefits and certain key aspects of the study such as biobanking and data sharing. The results showed that research participants had limited understanding and/or recall of the TBGEN-Africa study goals and methods. Some participants were of the opinion that TBGEN-Africa was not a genetics study because tuberculosis is not an inheritable condition. Factors that may have hindered understanding and/or recall of study information are diagnostic misconception, and information overload and situational vulnerability. There is a need for improved practices to support research participants’ understanding of consent information in genetics studies including designing the consent process in ways that minimize psychological distress and diagnostic/therapeutic misconception. (shrink)

Background: There is a significant discourse in the literature that opines that people who use illicit opiates are unable to provide informed consent due to withdrawal symptoms and cognitive impairment as a result of opiate use. Aims: This paper discusses the issues related to informed consent for this population. Ethical considerations: Ethical approval was obtained from both the local REB and the university. Written informed consent was obtained from all participants. Method: This was a qualitative interpretive descriptive study. 22 participants (...) were interviewed, including 18 nurses, 2 social workers and 2 clinic support workers. The findings were analyzed using thematic analysis, which is a way of systematically reducing the complexity of the information to arrive at generalized explanations. Results: The staff at the clinic were overwhelming clear in their judgment that people who use opiates can and should be able to participate in research and that their drug use is not a barrier to informed consent. Conclusions: It is important to involve people who use opiates in research. Protectionist concerns about this population may be overstated. Such concerns do not promote the interests of research participants. People who use heroin need to be able to tell their story. (shrink)

Volume 19, Issue 10, October 2019, Page 105-107.

Any ethical inquiry into addiction research is faced with the preliminary challenge that the term “addiction” is itself a matter of scientific and ethical controversy. Accordingly, the chapter begins with a brief history of the term “addiction.” The chapter then turns to ethical issues surrounding consent and decision-making capacity viewed from the perspective of the current opioid epidemic. One concern is the neglect of the cyclical nature of addiction and the implications of this for the validity of current psychometric instruments (...) used to evaluate decision-making capacity in addiction. Another is the apparent discrepancy—possibly an ethical double standard—in the manner in which society and addiction researchers view the mental capacity and vulnerability of individuals who suffer from severe addiction. On the whole, the main ethical concern of the chapter is the puzzling lack of clinical research on decision-making capacity in research on addiction. (shrink)