Race, Power, and COVID-19: A Call for Advocacy within Bioethics

Mithani, Zamina; Cooper, Jane; Boyd, J. Wesley

doi:10.1080/15265161.2020.1851810

Cited by 62 publications

(27 citation statements)

References 31 publications

(24 reference statements)

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“…(Figure 1). Negotiated equilibriums hinge on 'counter storytelling' 39 , which incorporates narratives of the public and other stakeholders. Counter storytelling has been recognised as an essential element of procedural fairness in a post-colonial environment like India, where vulnerable populations are involved in research, as the present ethical paradigm is researcher-centric, and the findings of genetic research have been used by different groups to drive their own political agenda 19,39,40 .…”

Section: Discussionmentioning

confidence: 99%

Respecting values and perspectives in biobanking and genetic research governance: Outcomes of a qualitative study in Bengaluru, India

Vaz¹,

Warrier²,

et al. 2022

Wellcome Open Res

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Background: The promise of biobanking and genetic research (BGR) in the context of translational research towards improving public health and personalised medicine has been recognised in India. Worldwide experience has shown that incorporating stakeholders’ expectations and values into the governance of BGR is essential to address ethical aspects of BGR. This paper draws on engagement with various stakeholders in the South Indian city of Bengaluru to understand how incorporating people’s values and beliefs can inform policy making decisions and strengthen BGR governance within India. Methods: We adopted a qualitative research approach and conducted six focus group discussions with civil society members and seven in-depth interviews with key informants in BGR, identified through a targeted web search and snowballing methods, until data saturation was reached. Data were thematically analysed to identify emergent patterns. Results: Specific themes relating to the ethics and governance of BGR emerged. Fears and uncertainty about future sample and data use, possibilities of discrimination and exploitation in the use of findings and the lack of comprehensive data protection policies in India along with expectations of enhanced contributor agency, control in future use of samples and data, benefit sharing, enhanced utility of samples, sustained BGR and public good, reflected tensions between different stakeholders’ values and beliefs. Fair governance processes through an independent governance committee for biobanks and a system of ongoing engagement with stakeholders emerged as best practice towards building trust and respecting diversity of views and values. Conclusions: Ensuring public trust in BGR requires listening to stakeholders’ voices, being open to counter narratives, and a commitment to long term engagement embedded in principles of participatory democracy. This is central to a ‘people-centred governance framework’ involving a negotiated middle ground and an equilibrium of governance which promotes social justice by being inclusive, transparent, equitable, and trustworthy.

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Section: Discussionmentioning

confidence: 99%

Respecting values and perspectives in biobanking and genetic research governance: Outcomes of a qualitative study in Bengaluru, India

Vaz¹,

Warrier²,

et al. 2022

Wellcome Open Res

View full text Add to dashboard Cite

show abstract

“…1 Members of groups affected by systemic racism suffered disproportionate morbidity and mortality during the COVID-19 pandemic. [2][3][4][5][6][7] These groups, in particular black individuals, have long suffered gross abuses and injustices in healthcare. Partly as a result, members of marginalised groups have expressed lower intent to receive COVID-19 vaccines.…”

Section: Strengths and Limitations Of This Studymentioning

confidence: 99%

Factors associated with COVID-19 vaccine receipt at two integrated healthcare systems in New York City: a cross-sectional study of healthcare workers

Maru

Raut

et al. 2022

BMJ Open

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ObjectivesTo examine the factors associated with COVID-19 vaccine receipt among healthcare workers and the role of vaccine confidence in decisions to vaccinate, and to better understand concerns related to COVID-19 vaccination.DesignCross-sectional anonymous survey among front-line, support service and administrative healthcare workers.SettingTwo large integrated healthcare systems (one private and one public) in New York City during the initial roll-out of the COVID-19 vaccine.Participants1933 healthcare workers, including nurses, physicians, allied health professionals, environmental services staff, researchers and administrative staff.Primary outcome measuresThe primary outcome was COVID-19 vaccine receipt during the initial roll-out of the vaccine among healthcare workers.ResultsAmong 1933 healthcare workers who had been offered the vaccine, 81% had received the vaccine at the time of the survey. Receipt was lower among black (58%; OR: 0.14, 95% CI 0.1 to 0.2) compared with white (91%) healthcare workers, and higher among non-Hispanic (84%) compared with Hispanic (69%; OR: 2.37, 95% CI 1.8 to 3.1) healthcare workers. Among healthcare workers with concerns about COVID-19 vaccine safety, 65% received the vaccine. Among healthcare workers who agreed with the statement that the vaccine is important to protect family members, 86% were vaccinated. Of those who disagreed, 25% received the vaccine (p<0.001). In a multivariable analysis, concern about being experimented on (OR: 0.44, 95% CI 0.31 to 0.6), concern about COVID-19 vaccine safety (OR: 0.39, 95% CI 0.28 to 0.55), lack of influenza vaccine receipt (OR: 0.28, 95% CI 0.18 to 0.44), disagreeing that COVID-19 vaccination is important to protect others (OR: 0.37, 95% CI 0.27 to 0.52) and black race (OR: 0.38, 95% CI 0.24 to 0.59) were independently associated with COVID-19 vaccine non-receipt. Over 70% of all healthcare workers responded that they had been approached for vaccine advice multiple times by family, community members and patients.ConclusionsOur data demonstrated high overall receipt among healthcare workers. Even among healthcare workers with concerns about COVID-19 vaccine safety, side effects or being experimented on, over 50% received the vaccine. Attitudes around the importance of COVID-19 vaccination to protect others played a large role in healthcare workers’ decisions to vaccinate. We observed striking inequities in COVID-19 vaccine receipt, particularly affecting black and Hispanic workers. Further research is urgently needed to address issues related to vaccine equity and uptake in the context of systemic racism and barriers to care. This is particularly important given the influence healthcare workers have in vaccine decision-making conversations in their communities.

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“…The COVID-19 pandemic has exposed the vulnerabilities and racial inequalities faced by Latino laborers ( Mithani et al, 2020 , Waltenburg et al, 2020 ). This leads to implications on how to address the conditions Latino migrant laborers face.…”

Section: Systemic Racism and Latino Migrant Exploitationmentioning

confidence: 99%

Systemic racism and undocumented Latino migrant laborers during COVID-19: A narrative review and implications for improving occupational health

Salinas

2022

Journal of Migration and Health

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Race, Power, and COVID-19: A Call for Advocacy within Bioethics

Cited by 62 publications

References 31 publications

Respecting values and perspectives in biobanking and genetic research governance: Outcomes of a qualitative study in Bengaluru, India

Respecting values and perspectives in biobanking and genetic research governance: Outcomes of a qualitative study in Bengaluru, India

Factors associated with COVID-19 vaccine receipt at two integrated healthcare systems in New York City: a cross-sectional study of healthcare workers

Systemic racism and undocumented Latino migrant laborers during COVID-19: A narrative review and implications for improving occupational health

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