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.

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.

Consent and Assent to Participate in Research from People with Dementia

2007 ◽  
Vol 14 (1) ◽  
pp. 27-40 ◽  
Author(s):  
Susan Slaughter ◽  
Dixie Cole ◽  
Eileen Jennings ◽  
Marlene A Reimer
Keyword(s):  
Informed Consent ◽  
Data Collection ◽  
Vulnerable Populations ◽  
Research Participation ◽  
Minimal Risk ◽  
Careful Attention ◽  
People With Dementia ◽  
Practical Guidelines ◽  
Conducting Research ◽  
Research Assistants

Conducting research with vulnerable populations involves careful attention to the interests of individuals. Although it is generally understood that informed consent is a necessary prerequisite to research participation, it is less clear how to proceed when potential research participants lack the capacity to provide this informed consent. The rationale for assessing the assent or dissent of vulnerable individuals and obtaining informed consent by authorized representatives is discussed. Practical guidelines for recruitment of and data collection from people in the middle or late stage of dementia are proposed. These guidelines were used by research assistants in a minimal risk study.

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.

Ethical considerations

2015 ◽  
Author(s):  
David L. Streiner ◽  
Geoffrey R. Norman ◽  
John Cairney
Keyword(s):  
Informed Consent ◽  
Psychometric Properties ◽  
Vulnerable Populations ◽  
Ethical Issues ◽  
Ethical Challenges ◽  
Ethical Considerations ◽  
Ethical Problems ◽  
Consequential Validity ◽  
Disadvantaged Groups ◽  
Majority Population

Although studies of the psychometric properties of scales do not have the same ethical challenges as those involving interventions, there are still areas that researchers need to be sensitive to. These include issues such as informed consent, especially with vulnerable populations, and deception. This chapter also discusses confidentiality, and when this can be breached for legal reasons. It also returns to the issue of consequential validity and the ethical issues that may arise when minority or disadvantaged groups attain scores that are different from those of the majority population. This chapter discusses these and other ethical problems that may arise within the context of developing and validating scales.

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.

scholarly journals Learning From Vulnerable Populations: Methodological Implications of Interviewing Individuals With Fetal Alcohol Spectrum Disorder

2020 ◽  
Vol 19 ◽  
pp. 160940692093125
Author(s):  
Brenda S. Dow ◽  
Brandon M. Boylan
Keyword(s):  
Informed Consent ◽  
Vulnerable Populations ◽  
Cognitive Abilities ◽  
Fetal Alcohol Spectrum Disorder ◽  
Life Experiences ◽  
Spectrum Disorder ◽  
Fetal Alcohol ◽  
Interview Process ◽  
Conducting Research ◽  
Fetal Alcohol Spectrum

Scholars face methodological challenges when conducting research about vulnerable populations, such as individuals living with fetal alcohol spectrum disorder (FASD). They often struggle to identify, sample, and interview individuals in order to learn about their life experiences and perspectives. Although some scholarship provides methodological guidance on researching vulnerable populations, scant literature addresses accessing and collecting perceptions from individuals with FASD. Based on work with adults with FASD, we offer procedures for sampling and interviewing. Our suggestions include working with agencies and gatekeepers involved with the population; ensuring voluntary and informed consent throughout the interview process; establishing rapport with interviewees and providing a comfortable interview environment for them; and adjusting interview questions according to individuals’ cognitive abilities. By following these procedures, researchers can learn from these individuals while reducing the risk of harm to them.

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.

Decisional capacity to consent to treatment and anaesthesia in patients over the age of 60 undergoing major orthopaedic surgery

2019 ◽  
Vol 59 (4) ◽  
pp. 247-254 ◽  
Author(s):  
Gabriele Mandarelli ◽  
Giovanna Parmigiani ◽  
Felice Carabellese ◽  
Silvia Codella ◽  
Paolo Roma ◽  
...  
Keyword(s):  
Informed Consent ◽  
Orthopaedic Surgery ◽  
Decisional Capacity ◽  
Capacity To Consent ◽  
Capacity Evaluation ◽  
Decision Making Capacity ◽  
Consent To Treatment ◽  
Major Orthopaedic Surgery ◽  
Pain Symptoms ◽  
State Examination

Despite growing attention to the ability of patients to provide informed consent to treatment in different medical settings, few studies have dealt with the issue of informed consent to major orthopaedic surgery in those over the age of 60. This population is at risk of impaired decision-making capacity (DMC) because older age is often associated with a decline in cognitive function, and they often present with anxiety and depressive symptoms, which could also affect their capacity to consent to treatment. Consent to major orthopaedic surgery requires the patient to understand, retain and reason about complex procedures. This study was undertaken to extend the literature on decisional capacity to consent to surgery and anaesthesia of patients over the age of 60 undergoing major orthopaedic surgery. Recruited patients ( N=83) were evaluated using the Aid to Capacity Evaluation, the Beck Depression Inventory, the State–Trait Anxiety Inventory Y, the Mini-Mental State Examination and a visual analogue scale for measuring pain symptomatology. Impairment of medical DMC was common in the overall sample, with about 50% of the recruited patients showing a doubtful ability, or overt inability, to provide informed consent. Poor cognitive functioning was associated with reduced medical DMC, although no association was found between decisional capacity and depressive, anxiety and pain symptoms. These findings underline the need of an in-depth assessment of capacity in older patients undergoing major orthopaedic surgery.

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.

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