Vulnerable Research Participants: Anyone May Qualify

Jacobson, Gloria

doi:10.1177/0894318405280374

Cited by 4 publications

(3 citation statements)

References 11 publications

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“…Future research of actual patients who experienced standardized opt-in/opt-out consent policies during critical care could be valuable key informants of whether they regard those processes as respectful of human dignity in the context. 9,21,24,25 …”

Section: Discussionmentioning

confidence: 99%

Thematic Analysis of Cardiac Care Patients’ Explanations for Declining Contribution to a Genomic Research-Based Biobank

Williams

Nemeth

Sanner

et al. 2013

American Journal of Critical Care

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Background Health care delivery systems increasingly ask patients to contribute biological samples for future genomic-based health research during critical care admissions, as the result of genome-based research requirements of unprecedented large sample sizes. Few reports describe patients’ perceptions and responses to actual biobanking approaches in clinical settings. A qualitative study was conducted to explore 568 cardiac care patients’ explanations of why they declined to contribute their samples to a future genomic research biobank. Objectives To (1) identify themes emerging from explanations for declining contribution to the research biobanking initiative and (2) determine how the content informs the stewardship conceptual framework that addresses evidence-based clinical ethics practices in genomic and genetic research biobanking. Methods This qualitative study used an analytic method that combines inductive and deductive approaches to identify themes in patients’ explanations for declining to contribute to a research biobank initiative. The hybrid design has relevance to health services research that seeks to develop taxonomy, themes, and theory. Results Inductive approaches showed that themes of intrusion and autonomy dominated explanations. Deductive approaches affirmed previously proposed elements of a stewardship conceptual framework that addresses ethics in biobanking. Conclusion Research in understanding patients’ perceptions can guide nursing and biobank practices in developing best practices.

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Section: Discussionmentioning

confidence: 99%

Thematic Analysis of Cardiac Care Patients’ Explanations for Declining Contribution to a Genomic Research-Based Biobank

Williams

Nemeth

Sanner

et al. 2013

American Journal of Critical Care

View full text Add to dashboard Cite

show abstract

“…Women, religious minorities, queer, and non-White service members may face further structural constraints or marginalization living within an environment in which their predecessors were excluded and authorities remain mainly White, 10 Protestant, heterosexual, upper-middle class men (Dansby et al, 2001;Hansen, 2012;Nacoste, 2001). Working with research participants who are experiencing heightened and cumulative vulnerabilities across spheres, such as those within all-encompassing institutions, requires specific methodological and epistemological orientations that are geared toward mitigating harm and increasing sense of agency for those who are facing constraints (Dickson-Swift et al, 2008;Jacobson, 2005;Liamputtong, 2007;O'Connor and O'Neill, 2004;Pacheco-Vega and Parizeau, 2018;Shaw et al, 2020).…”

Section: All-encompassing Institutions and Research Challengesmentioning

confidence: 99%

All-encompassing ethnographies: Strategies for feminist and equity-oriented institutional research

Winfield

2022

Ethnography

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This article addresses the challenges inherent to conducting ethnography in all-encompassing institutions and presents strategies for equity-oriented research in such restrictive settings. All-encompassing institutions are organizations that have no separation between home, work, and play, with forms of surveillance, power imbalances, and control that create logistical and ethical challenges for ethnographers. Building on feminist orientations to qualitative inquiry, the author shares vignettes from her research in a military institution to introduce four strategies for ethnography in these contexts. The strategies are: (a) adopting a participant-centered approach; (b) attending to power dynamics; (c) negotiating consent and confidentiality; and (d) engaging participants in research presentation. These strategies are applicable to ethnographers across contexts looking to meaningfully engage interlocutors in research generation and presentation.

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“…These vulnerabilities often overlap and intersect; for example, poor health may limit a person's ability to work, and thus, impact their financial security. Although all humans are at-risk to some extent in the research process, participants with heightened or cumulative vulnerabilities across these four spheres present specific challenges and ethical responsibilities for ethnographers (Jacobson 2005;Liamputtong 2007;Rogers et al 2015;Shaw et al 2020;Watts 2008). For simplicity's sake, when referring to those with heightened or cumulative vulnerabilities in this article, I will use the terms "vulnerable," "disempowered," "at-risk," and "those with limited agency.…”

Section: Conceptualizing Vulnerabilitymentioning

confidence: 99%

Vulnerable Research: Competencies for Trauma and Justice-Informed Ethnography

Winfield

2021

Journal of Contemporary Ethnography

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Ethnographers often work with individuals who are physically, psychologically, spiritually, and/or structurally vulnerable. The article introduces six competencies for ethnographers to be trained in and assessed on to ensure their research is trauma and justice-informed. The author builds from her own research experiences, current methodological approaches to qualitative inquiry, and an integration of sociology and psychology to detail these competencies and provide tools for training and assessment. The competencies include the following: (a) self-awareness; (b) participant-centered approach; (c) recognition of social location; (d) attention to trauma; (e) knowledge of professional limits; and (f) effective boundaries and self-care. The six competencies and Action-reflection course outlined in the article are designed to support researchers in attending to how their personal histories, embodied states, and power dynamics shape the research endeavor, as well as, learn skills for healthy boundary-keeping, risk assessment, and steps to minimize participant (re)traumatization. Although these competencies are essential for work with disempowered populations, they are beneficial for all qualitative researchers to ensure both personal and participant safety.

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Vulnerable Research Participants: Anyone May Qualify

Cited by 4 publications

References 11 publications

Thematic Analysis of Cardiac Care Patients’ Explanations for Declining Contribution to a Genomic Research-Based Biobank

Thematic Analysis of Cardiac Care Patients’ Explanations for Declining Contribution to a Genomic Research-Based Biobank

All-encompassing ethnographies: Strategies for feminist and equity-oriented institutional research

Vulnerable Research: Competencies for Trauma and Justice-Informed Ethnography

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