Facing the Ethical Challenges: Consumer Involvement in COVID-19 Pandemic Research

Straiton, Nicola; Bowden, Janelle; Nichol, Alistair; Murphy, Robert X.; Snelling, Tom; Zalcberg, John; Clements, John M.; Stubbs, James R.; Economides, Alex; Kent, Derin; Ansell, James; Symons, Tanya

doi:10.1007/s11673-020-10060-5

Cited by 3 publications

(2 citation statements)

References 16 publications

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“…Visto que a corrida para publicar comprometeu a qualidade e a relevância dos artigos divulgados na Covid-19, editores e pesquisadores devem lutar juntos contra essa corrida para publicar. Mesmo que o conhecimento seja construído gradualmente, é imperativo a qualidade e não de quantidade (Safieddine;Kassir, 2020;Straiton et al, 2020;Bramstedt, 2020).…”

Section: Inadequadasunclassified

A pandemia da COVID-19 e dilemas éticos relacionados à ciência e a morte: uma revisão integrativa

Lima,

Gouveia Neto,

Cordeiro

et al. 2024

CLCS

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Este artigo tem por objetivo discutir os dilemas éticos causados pela pandemia da Covid-19 no contexto da ciência e suas implicações nas mortes. Para tanto, realizou-se uma revisão integrativa entre junho e julho de 2021, utilizando os descritores “Covid-19”, “SARS-CoV-2”, “Mortalidade”, “Ética”, “Ciência”, “Mudança social”, “Resultados negativos” e “Fator de impacto” para a Biblioteca Virtual de Saúde e Scientific Eletronic Library Online. Para a PUBMED utilizou-se “ethics” OR “ethical”, “bioethics”, “Covid-19”, “sars-cov-2” e“coronavirus”. Identificou-se que o uso da ciência em tempos de pandemia é essencial para a descoberta de informações, porém, é um campo de atuação geralmente desvalorizado, em alguns relatos observa-se o uso de informações inadequadas como ferramenta para poder político, o que resulta em consequências graves para a saúde pública.

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Section: Inadequadasunclassified

A pandemia da COVID-19 e dilemas éticos relacionados à ciência e a morte: uma revisão integrativa

Lima,

Gouveia Neto,

Cordeiro

et al. 2024

CLCS

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“…Reconciling this with the need to protect study participants and the public generated significant discussion [ 21 ] with “minimal risk” becoming more difficult to quantify [ 39 ]. Obtaining consumer input into the research design has also been problematic [ 40 ]; reasons included practical and official limitations to travel and meetings, changing understanding of COVID-19 pathogenesis and side effects of treatments, and conflicting public advice about participating in or avoiding certain activities, exposures, and medical therapies. Note is made of the confused state of the literature on these topics in spring 2020; much of the available information was from small studies, often observational and issued as preprints without peer review, which were then picked up by news services.…”

Section: Introductionmentioning

confidence: 99%

The future is now: our experience starting a remote clinical trial during the beginning of the COVID-19 pandemic

Liu

Ezekowitz

Columbo

et al. 2021

Trials

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Background The World Health Organization declared the outbreak of SARS-CoV-2 a pandemic on February 11, 2020. This organism causes COVID-19 disease and the rapid rise in cases and geographic spread strained healthcare systems. Clinical research trials were hindered by infection control measures discouraging physical contact and diversion of resources to meet emergent requirements. The need for effective treatment and prevention of COVID-19 prompted an untested investigational response. Trial groups adapted approaches using remote enrolment and consenting, newly developed diagnostic tests, delivery of study medications and devices to participants’ homes, and remote monitoring to ensure investigator/enrollee safety while preserving ethical integrity, confidentiality, and data accuracy. Methods Clinical researchers at our community health system in the USA undertook an outpatient randomized open-label study of hydroxychloroquine (HCQ) prophylaxis versus observation of SARS-CoV-2 infection in household COVID-19 contacts. Designed in March 2020, challenges included COVID-19 infection in the research group, HCQ shortage, and lack of well-established home SARS-CoV-2 tests and remote ECG monitoring protocols in populations naive to these procedures. The study was written, funded, and received ethical committee approval in 4 months and was completed by September 2020 during a period of fluctuating infection rates and conflicting political opinions on HCQ use; results have been published. Singular methodology included the use of a new RNA PCR saliva SARS-CoV-2 home diagnostic test and a remote smartphone-based 6-lead ECG recording system. Results Of 483 households contacted regarding trial participation, 209 (43.3%) did not respond to telephone calls/e-mails and 90 (18.6%) declined; others were not eligible by inclusion or exclusion criteria. Ultimately, 54 individuals were enrolled and 42 completed the study. Numbers were too small to determine the efficacy of HCQ prophylaxis. No serious treatment-related adverse events were encountered. Conclusions Flexibility in design, a multidisciplinary research team, prompt cooperation among research, funding, ethics review groups, and finding innovative study approaches enabled this work. Concerns were balancing study recruitment against unduly influencing individuals anxious for protection from the pandemic and exclusion of groups based on lack of Internet access and technology. An issue to address going forward is establishing research cooperation across community health systems before emergencies develop. Trial registration ClinicalTrials.govNCT04652648. Registered on December 3, 2020.

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The Fragility of Scientific Rigour and Integrity in “Sped up Science”: Research Misconduct, Bias, and Hype and in the COVID-19 Pandemic

Lipworth,

Kerridge,

Stewart

et al. 2023

Bioethical Inquiry

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Facing the Ethical Challenges: Consumer Involvement in COVID-19 Pandemic Research

Cited by 3 publications

References 16 publications

A pandemia da COVID-19 e dilemas éticos relacionados à ciência e a morte: uma revisão integrativa

A pandemia da COVID-19 e dilemas éticos relacionados à ciência e a morte: uma revisão integrativa

The future is now: our experience starting a remote clinical trial during the beginning of the COVID-19 pandemic

The Fragility of Scientific Rigour and Integrity in “Sped up Science”: Research Misconduct, Bias, and Hype and in the COVID-19 Pandemic

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