Ethical Challenges in Conducting Research on Dying Patients and Those at High Risk of Dying

2012 ◽  
Vol 19 (1) ◽  
pp. 1-12 ◽  
Author(s):  
Blair Henry ◽  
Damon C. Scales
Keyword(s):  
High Risk ◽  
Ethical Challenges ◽  
Dying Patients ◽  
Conducting Research

scholarly journals Resolving ethical challenges when researching with minority and vulnerable populations: LGBTIQ victims of violence, harassment and bullying

2016 ◽  
Vol 13 (1) ◽  
pp. 4-22 ◽  
Author(s):  
James A Roffee ◽  
Andrea Waling
Keyword(s):  
High Risk ◽  
Queer Theory ◽  
Best Practice ◽  
Minority Populations ◽  
Ethical Challenges ◽  
Ethical Research ◽  
Victims Of Violence ◽  
Conducting Research ◽  
Research Frameworks ◽  
Theoretical Foundations

This article provides an analysis of the issues and ethical challenges faced in a study with LGBTIQ student participants concerning their experiences of violence, harassment and bullying in tertiary settings. The authors detail the ethical challenges behind the development of the project, and around conducting research with a minority and vulnerable population. The article illustrates how the utilization of feminist and queer theory has impacted the process of conducting ethical research, including approaches to recruitment and participant autonomy. The dilemmas of confidentiality within a self-labelled and easily identifiable population are resolved. Further, unexpected challenges and risks to participant safety created through adherence to institutional ethical research frameworks are rectified. Importantly, the authors seek to avoid revictimization of participants and to instead empower students in their responses to violence, harassment and bullying that they may have experienced. The authors point to utilization of theoretical foundations and continual reflexive improvement as elements of best practice for those seeking to research minority populations, and in projects marked by the participation of those deemed vulnerable and high-risk.

Pandemic Disease, Public Health, and Ethics

2019 ◽  
pp. 796-811 ◽  
Author(s):  
Maxwell Smith ◽  
Ross Upshur
Keyword(s):  
Public Health ◽  
Ethical Issues ◽  
Ethical Challenges ◽  
Pandemic Preparedness ◽  
Scarce Resources ◽  
Ethical Frameworks ◽  
Health Measures ◽  
Care Workers ◽  
The Face ◽  
Conducting Research

Infectious disease pandemics raise significant and novel ethical challenges to the organization and practice of public health. This chapter provides an overview of the salient ethical issues involved in preparing for and responding to pandemic disease, including those arising from deploying restrictive public health measures to contain and curb the spread of disease (e.g., isolation and quarantine), setting priorities for the allocation of scarce resources, health care workers’ duty to care in the face of heightened risk of infection, conducting research during pandemics, and the global governance of preventing and responding to pandemic disease. It also outlines ethical guidance from prominent ethical frameworks that have been developed to address these ethical issues and concludes by discussing some pressing challenges that must be addressed if ethical reflection is to make a meaningful difference in pandemic preparedness and response.

scholarly journals Conducting epigenetics research with refugees and asylum seekers: attending to the ethical challenges

2021 ◽  
Vol 13 (1) ◽  
Author(s):  
Faten Taki ◽  
Inmaculada de Melo-Martin
Keyword(s):  
Asylum Seekers ◽  
Evidence Base ◽  
Ethical Challenges ◽  
Physical And Mental Health ◽  
Healthcare Barriers ◽  
Humanitarian Action ◽  
Disease States ◽  
Conducting Research ◽  
Refugees And Asylum Seekers ◽  
Epigenetic Research

AbstractAn increase in global violence has forced the displacement of more than 70 million people, including 26 million refugees and 3.5 asylum seekers. Refugees and asylum seekers face serious socioeconomic and healthcare barriers and are therefore particularly vulnerable to physical and mental health risks, which are sometimes exacerbated by immigration policies and local social discriminations. Calls for a strong evidence base for humanitarian action have encouraged conducting research to address the barriers and needs of refugees and asylum seekers. Given the role of epigenetics factors to mediate the effect of psychological and environmental exposures, epigenetic modifications have been used as biomarkers for life adversity and disease states. Therefore, epigenetic research can be potentially beneficial to address some of the issues associated with refugees and asylum seekers. Here, we review the value of previous and ongoing epigenetic studies with traumatized populations, explore some of the ethical challenges associated with epigenetic research with refugees and asylees and offer suggestions to address or mitigate some of these challenges. Researchers have an ethical responsibility to implement strategies to minimize the harms and maximize the short and long-term benefits to refugee and asylee participants.

Conducting Research in Difficult, Dangerous, and/or Vulnerable Contexts: Messy Narratives From the Field

2021 ◽  
pp. 089331892110587
Author(s):  
Brittany L. Peterson ◽  
Oana B. Albu ◽  
Kirsten Foot ◽  
Darvelle Hutchins ◽  
Jack Qiu ◽  
...  
Keyword(s):  
Organizational Communication ◽  
Research Projects ◽  
Ethical Challenges ◽  
For Profit ◽  
Governmental Agencies ◽  
High Profile ◽  
Conducting Research

Organizational communication scholars have historically conducted research in large for-profit businesses, governmental agencies, and a few high-profile nonprofits/NGOs—all of which are relatively easy to access and presumably “safe” to study. It is largely unsurprising, then, that limited scholarship addresses the challenges associated with conducting research in less standard contexts that are often perceived to be difficult, dangerous, and/or vulnerable (DDV). In this forum, we offer lived stories—unfiltered messy narratives—to demystify three core ethical challenges inherent in conducting research of this nature and share how we (imperfectly) navigated them. In addition, we offer practical strategies for conducting research in DDV contexts. Taken together, our overall collective aim is to successfully prepare future scholars to conduct research projects in DDV contexts.

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 THE INTERSECTION OF ETHICS AND VULNERABLE ELDERS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S238-S238
Author(s):  
Pamela B Teaster ◽  
Georgia Anetzberger
Keyword(s):  
Older Adults ◽  
Social Services ◽  
Ethical Issues ◽  
Elder Abuse ◽  
Cognitive Status ◽  
Ethical Challenges ◽  
Community Based ◽  
Conducting Research ◽  
Definition Of ◽  
Community Based Services

Abstract Researchers, practitioners and policymakers are daily confronted with multiple and competing situations regarding vulnerable older adults and the complex issues that they face in all aspects of their lives. Challenges can arise in the provision of social services, dispensing justice, conducting research, or addressing legal issues. The purpose of this symposium is to discuss dilemmas that vulnerable older adults and concerned others face by elucidating current and future challenges facing this population, particularly in the realms of compromised health (cognitive impairment); effective status (gender); care arrangements (home and community-based services); and abuse, neglect, and exploitation. Teaster and Anetzberger discuss relevant ethical theories and principles as well as a definition of vulnerability. Santos and Nichols-Hadeed report on ethical issues embedded in vulnerable elders’ cognitive status. Bowland and Halaas highlight the intersection of ethics, gender and vulnerable elders. Niles-Yokum and Beaumaster discuss the nexus of ethics and the provision of home and community based services for vulnerable older adults. Heisler considers vulnerabilities of older adults and ethical challenges when addressing elder abuse. Throughout the papers, we weave the ethical principles of autonomy, beneficence, nonmaleficence, and justice.

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 Developing an International Registry for Uterus Transplantation (IRUTx): Promises and Challenges

2020 ◽  
Vol 35 (12) ◽  
pp. 2643-2649
Author(s):  
Natasha Hammond-Browning ◽  
Nicola Jane Williams
Keyword(s):  
Ethical Challenges ◽  
Uterus Transplantation ◽  
International Registry ◽  
Potential Benefits ◽  
Practical Guidance ◽  
Conducting Research ◽  
Development Practice

ABSTRACT Uterus Transplantation (UTx) is an experimental vascular composite allograft designed to provide women with absolute uterine factor infertility with the opportunity to gestate and give birth to their future offspring. The number of UTx procedures performed worldwide now stands at ≥70 and as the number of cases performed increases so too does the volume of potential data that may be gathered to inform the development, practice and regulation of UTx. Given the value of this data, and the challenges associated with keeping track of cases and outcomes where data remains unpublished and/or scattered, scientists and academics conducting research into UTx have increasingly called for the swift creation, implementation and management of an international registry for Uterus Transplantation (IRUTx). This article explores and provides practical guidance regarding the potential benefits the IRUTx may provide to stakeholders, as well as the legal and ethical challenges that its creation may pose in terms of dataset design, consent, privacy, researcher compliance and governance.

The Challenges of Monitoring and Analyzing WPS for Scholars

2018 ◽  
pp. 849-862
Author(s):  
Natalie Hudson
Keyword(s):  
Survey Data ◽  
Ethical Challenges ◽  
Policy And Practice ◽  
Scholarly Research ◽  
Peace And Security ◽  
Women's Lives ◽  
Conducting Research ◽  
The Impact

This chapter explores scholarly contributions to the dialogue on women, peace, and security (WPS) and reveals the challenges faced by those conducting research on WPS. Some in this space identify as feminists, some as activists, and some even step into the policy world for brief moments. Scholarly research goals vary, from a focus on the development of the WPS architecture and the implementation of WPS policy, to explorations of the impact of the overall agenda on women’s lives. As the scholarship aims diverge, so too does the motivation behind the research and the ways in which the research intersects with advocacy, policy, and practice. Using survey data from those who claim to work in the WPS space, this chapter examines the positionality of this group of scholars (as individuals), the practical and ethical challenges that this group faces in conducting research on (and at times engaging in advocacy for) WPS, and the ways in which these scholars and their research intersect with WPS policy and politics.

Streptococcus pyogenes purpura fulminans and septic shock: A case highlighting the ethical considerations of high-risk extracorporeal membrane oxygenation

2020 ◽  
Vol 43 (7) ◽  
pp. 500-502
Author(s):  
Taylor Wheaton ◽  
Ogechukwu Menkiti ◽  
Amit Misra
Keyword(s):  
Septic Shock ◽  
High Risk ◽  
Extracorporeal Membrane Oxygenation ◽  
Streptococcus Pyogenes ◽  
Purpura Fulminans ◽  
Ethical Challenges ◽  
Membrane Oxygenation ◽  
Risk Patients ◽  
Refractory Septic Shock ◽  
Poor Outcomes

Separately, refractory septic shock and purpura fulminans have very poor outcomes. The ethics involved in offering extracorporeal membrane oxygenation to very high-risk patients is complex. We report a novel case of refractory shock requiring veno-arterial extracorporeal membrane oxygenation and continuous renal replacement therapy due to Streptococcus pyogenes bacteremia with purpura fulminans to highlight the ethical challenges in offering extracorporeal membrane oxygenation to a patient with such a poor likelihood of survival.

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