Ethical and Cultural Considerations in Informed Consent in Botswana

2007 ◽  
Vol 14 (4) ◽  
pp. 503-509 ◽  
Author(s):  
Sheila Shaibu
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Nurse Educators ◽  
Cultural Practices ◽  
Culturally Sensitive ◽  
Ethical Challenges ◽  
Research Participants ◽  
Cultural Considerations ◽  
Conducting Research

Reflections on my experience of conducting research in Botswana are used to highlight tensions and conflicts that arise from adhering to the western conceptualization of bioethics and the need to be culturally sensitive when carrying out research in one's own culture. Cultural practices required the need to exercise discretionary judgement guided by respect for the culture and decision-making protocols of the research participants. Ethical challenges that arose are discussed. The brokerage role of nurse educators and leaders in contextualizing western bioethics is emphasized.

scholarly journals Article 5: The Role of Parents in the Proxy Informed Consent Process in Medical Research involving Children

2020 ◽  
Vol 28 (3) ◽  
pp. 521-546
Author(s):  
Sheila Varadan
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Medical Research ◽  
Well Being ◽  
Ethical Challenges ◽  
Research Setting ◽  
Role Of Parents ◽  
Article 5 ◽  
The Relationship

Abstract Medical research involving child subjects has led to advances in medicine that have dramatically improved the lives, health and well-being of children. Yet, determining when and under what conditions a child should be enrolled in medical research remains an ethically vexing question in research ethics. At the crux of the issue is the free and informed consent of the child participant. A child, who is presumed legally incompetent, or lacks sufficient understanding to exercise autonomous decision-making, will not be able to express free and informed consent in the research setting. Rather than exclude all such children from medical research, a parent (or legal guardian) is designated as a proxy to consent on the child’s behalf. However, the concept of proxy informed consent and the framework for its implementation present practical and ethical challenges for researchers, particularly in navigating the relationship between proxy decision-makers and child subjects in the medical research setting. Article 5 of the uncrc may offer guidance on this point: (1) it places boundaries around how parental authority should be exercised; (2) it offers a model for parent-child decision-making that is participatory, collaborative and linked to the child’s enjoyment of rights under the uncrc; (3) it respects and supports the autonomy of child participants by recognising their evolving capacities to give informed consent. This paper concludes that greater consideration should be given to Article 5 as a complementary framework for researchers engaged in medical research involving children.

scholarly journals Healthcare Interpreting and Informed Consent: What is the Interpreter’s Role in Treatment Decision-Making?

2007 ◽  
Vol 18 (2) ◽  
pp. 225-247 ◽  
Author(s):  
Andrew Clifford
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Medical Ethics ◽  
Treatment Decision ◽  
Cross Cultural ◽  
Professional Relationships ◽  
Case Scenario ◽  
Treatment Decision Making ◽  
General Communication

This article examines the part that healthcare interpreters play in cross-cultural medical ethics, and it argues that there are instances when the interpreter needs to assume an interventionist role. However, the interpreter cannot take on this role without developing expertise in the tendencies that distinguish general communication from culture to culture, in the ethical principles that govern medical communication in different communities, and in the development of professional relationships in healthcare. The article describes each of these three variables with reference to a case scenario, and it outlines a number of interventionist strategies that could be potentially open to the interpreter. It concludes with a note about the importance of the three variables for community interpreter training. Keywords: community interpreting, informed consent, role of the interpreter, healthcare.

The ethics of pain control in infants and children

2013 ◽  
pp. 661-668
Author(s):  
Gary A. Walco ◽  
Maureen C. Kelley
Keyword(s):  
Pain Treatment ◽  
Infants And Children ◽  
Standards Of Care ◽  
Local Context ◽  
Placebo Control ◽  
Ethical Challenges ◽  
Cultural Considerations ◽  
Conducting Research ◽  
Control Designs ◽  
In Infants And Children

In this chapter we will offer a way of framing the ethical balance of competing considerations in pain treatment in infants and children, distinguishing between analyses of harms and benefits, from other more pragmatic, contextual, and cultural considerations. We begin with the ethical foundations behind good pain management for any patient, and especially children: the ethical duty to prevent harm by alleviating pain or suffering, and the importance of assuring equal access to pain treatment. Historically, the driving ethical concern in paediatric pain has been the pervasive undertreatment of pain in children. In the second and main section of the chapter, we offer a detailed analysis of the practical ethical challenges involved in weighing the harms and benefits of pain relief against untreated or undertreated pain. In the third section, we will discuss the more specific concerns of socioeconomic and cultural determinants to paediatric pain treatment. Finally, in the last section, we will address concerns in conducting research on pain interventions in infants and children, as clearly many of the modal methodologies traditionally used for clinical trials in adults (e.g. placebo control designs) pose unjustifiable risk to younger individuals. We will also discuss the importance of considering local context as it impacts standards of care to guide ethical paediatric pain research.

scholarly journals Informed Consent and Decision Making Among Participants in Novel-Design Phase I Oncology Trials

2017 ◽  
Vol 13 (10) ◽  
pp. e863-e873 ◽  
Author(s):  
Katherine E. Reeder-Hayes ◽  
Megan C. Roberts ◽  
Gail E. Henderson ◽  
Elizabeth C. Dees
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Phase I ◽  
Treatment Options ◽  
Research Participation ◽  
Predictive Biomarker ◽  
Ethical Challenges ◽  
Phase I Clinical Trials ◽  
Standard Drug ◽  
Experimental Drugs

Background: Although phase I clinical trials are the gateway to progress in cancer therapies, this setting poses ethical challenges to ensure that patients provide consent free from misunderstandings of therapeutic intent or unrealistic expectations of benefit. The design of phase I oncology trials has evolved rapidly over time and today includes more targeted agents and combinations of experimental drugs with standard drugs, which may further complicate how patients understand phase I research participation. Methods: We conducted semistructured interviews regarding motivations, decision making, and understanding of trial purpose nested within a phase I clinical trial of a novel PI3kinase inhibitor combined with a standard oral chemotherapy in 18 participants. Results: Fewer than half of patients correctly identified the safety and dosing objectives. The inclusion of a targeted agent was attractive to participants and was perceived as an indicator of less toxic or more efficacious therapy, with less appreciation for added risks. The significance of a cellular drug target, without a known predictive biomarker of response, was unclear to patients. The inclusion of a standard drug in the regimen attracted patients with more treatment options than traditional first-in-human participants. Patients frequently expressed a realistic understanding of prognosis and uncertainty of benefit, but simultaneous hopes for extraordinary outcomes. Conclusion: Novel phase I oncology trial designs may attract patients with less constrained treatment options, but the inclusion of targeted drugs and combinations including standard chemotherapies is likely to complicate understanding of safety and dosing objectives and likelihood of personal benefit for purposes of informed consent.

Issues of Informed Consent from Persons with Dementia When Employing Assistive Technologies

2019 ◽  
pp. 166-187
Author(s):  
Peter Novitzky ◽  
Cynthia Chen ◽  
Alan F. Smeaton ◽  
Renaat Verbruggen ◽  
Bert Gordijn
Keyword(s):  
Informed Consent ◽  
Research And Development ◽  
Ethical Analysis ◽  
Assistive Technologies ◽  
Ethical Challenges ◽  
Research Participants

The use of assistive technologies (ATs) in the provision of healthcare promises to provide novel opportunities to protect, empower, and extend the autonomy of persons with dementia (PwDs). However, it also poses autonomy-related challenges, especially regarding informed consent. Traditional informed consent procedures, aimed at the protection of the autonomy of research participants and patients undergoing treatment, are not readily applicable to PwDs when it comes to deciding about ATs. This chapter analyzes the ethical challenges of obtaining informed consent from PwDs for research and development, and the use of ATs. The analysis reviews both traditional informed consent procedures and more innovative ones. The chapter will conclude with a list of recommendations, based on the findings of the ethical analysis.

scholarly journals Ethical challenges in researching and telling the stories of recently deceased people

2020 ◽  
pp. 174701612095250
Author(s):  
Glenys Caswell ◽  
Nicola Turner
Keyword(s):  
Decision Making ◽  
Review Process ◽  
Extended Period ◽  
Ethical Review ◽  
Ethical Challenges ◽  
Decision Making Processes ◽  
The Dead ◽  
Conducting Research ◽  
Ethical Review Process ◽  
Deceased People

This paper explores ethical challenges encountered when conducting research about, and telling, the stories of individuals who had died before the research began. Cases were explored where individuals who lived alone had died alone at home and where their bodies had been undiscovered for an extended period. The ethical review process had not had anything significant to say about the deceased ‘participants’. As social researchers we considered whether it was ethical to involve deceased people in research when they had no opportunity to decline, and we were concerned about how to report such research. The idea that the dead can be harmed did not help our decision-making processes, but the notion of the dead having limited human rights conferred upon them was useful and aided us in clarifying how to conduct our research and disseminate our findings.

scholarly journals Decision-making approaches in transgender healthcare: conceptual analysis and ethical implications

2021 ◽  
Author(s):  
Karl Gerritse ◽  
Laura A. Hartman ◽  
Marijke A. Bremmer ◽  
Baudewijntje P. C. Kreukels ◽  
Bert C. Molewijk
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Evidence Base ◽  
Standards Of Care ◽  
Ethical Challenges ◽  
Ethical Implications ◽  
Consultation Room ◽  
Care Models ◽  
Moral Dimensions ◽  
Explicit Discussion

AbstractOver the past decades, great strides have been made to professionalize and increase access to transgender medicine. As the (biomedical) evidence base grows and conceptualizations regarding gender dysphoria/gender incongruence evolve, so too do ideas regarding what constitutes good treatment and decision-making in transgender healthcare. Against this background, differing care models arose, including the ‘Standards of Care’ and the so-called ‘Informed Consent Model’. In these care models, ethical notions and principles such as ‘decision-making’ and ‘autonomy’ are often referred to, but left unsubstantiated. This not only transpires into the consultation room where stakeholders are confronted with many different ethical challenges in decision-making, but also hampers a more explicit discussion of what good decision-making in transgender medicine should be comprised of. The aim of this paper is to make explicit the conceptual and normative assumptions regarding decision-making and client autonomy underpinning the ‘Standards of Care’ and ‘Informed Consent Model’ currently used in transgender care. Furthermore, we illustrate how this elucidation aids in better understanding stakeholders’ ethical challenges related to decision-making. Our ethical analysis lays bare how distinct normative ambiguities in both care models influence decision-making in practice and how foregrounding one normative model for decision-making is no moral panacea. We suggest that the first steps towards good decision-making in gender-affirming medical care are the acknowledgement of its inherent normative and moral dimensions and a shared, dialogical approach towards the decision-making process.

scholarly journals Reflections of methodological and ethical challenges in conducting research during COVID-19 involving resettled refugee youth in Canada

2021 ◽  
pp. medethics-2021-107291
Author(s):  
Zoha Salam ◽  
Elysee Nouvet ◽  
Lisa Schwartz
Keyword(s):  
Qualitative Research ◽  
Informed Consent ◽  
Ethical Challenges ◽  
Refugee Youth ◽  
Scientific Rigour ◽  
Methodological Challenges ◽  
Migrant Youth ◽  
Conducting Research

Research involving migrant youth involves navigating and negotiating complex challenges in order to uphold their rights and dignity, but also all while maintaining scientific rigour. COVID-19 has changed the global landscape within many domains and has increasingly highlighted inequities that exist. With restrictions focusing on maintaining physical distancing set in place to curb the spread of the virus, conducting in-person research becomes complicated. This article reflects on the ethical and methodological challenges encountered when conducting qualitative research during the pandemic with Syrian migrant youth who are resettled in Canada. The three areas discussed from the study are recruitment, informed consent and managing the interviews. Special attention to culture as being part of the study’s methodology as an active reflexive process is also highlighted. The goal of this article is to contribute to the growing understanding of complexities of conducting research during COVID-19 with populations which have layered vulnerabilities, such as migrant youth. This article hopes that the reflections may help future researchers in conducting their research during this pandemic by being cognizant of both the ethical and methodological challenges discussed.

scholarly journals Role of Informed Consent in a Decision-making on Participation in The Clinical Trial: Multicenter study in Russia “Face to Face”

2016 ◽  
Vol 15 (4) ◽  
pp. 40-51 ◽  
Author(s):  
O. I. Zvonareva ◽  
E. S. Kulikov ◽  
I. A. Deev ◽  
O. S. Kobyakova ◽  
O. S. Fedorova ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Decision Making ◽  
Informed Consent ◽  
Multicenter Study ◽  
Face To Face

Research in Adults with Diminished Capacity

2021 ◽  
Author(s):  
Neal Dickert ◽  
Emily Largent
Keyword(s):  
Informed Consent ◽  
Vulnerable Populations ◽  
Health Conditions ◽  
Ethical Challenges ◽  
Decisional Capacity ◽  
Ethical Research ◽  
Diminished Capacity ◽  
Conducting Research ◽  
Surrogate Consent

Informed consent is often identified as a condition of ethical research. Therefore, ethical challenges arise when conducting research with adults who lack the capacity to provide informed consent. In this chapter, the authors consider these challenges using two principal cases: adults with dementia and adults with acute, emergent health conditions. As this pair of cases shows, decisional capacity can be “diminished” in many ways, and a number of strategies are available to address diminished capacity. In this chapter, the authors highlight surrogate consent and the partial-involvement strategies of assent and dissent and note additional protections afforded to these vulnerable populations.

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