Archives des mots-clés : biomedical research

Enjeux, pratiques et stratégies d’ouverture de l’information scientifique en bioéconomie

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Auteur.ice : Marianne Duquenne

La bioéconomie est une opportunité en réponse aux problématiques écologiques actuelles que nous traversons. Ce nouveau paradigme contribue à une transition globale vers des modèles plus durables et respectueux de l’environnement. La mise en œuvre d’une telle stratégie sur un territoire implique nécessairement une forte interaction entre le secteur privé et le secteur public pour répondre aux défis d’innovation posés par la bioéconomie.

La région Hauts-de-France témoigne de cet écosystème composé d’acteurs de l’industrie, de la recherche, du transfert ou encore du monde de l’exploitation agricole. L’enjeu de cet article est double : d’abord, de comprendre comment ces catégories d’acteurs s’organisent pour produire des connaissances scientifiques et techniques en bioéconomie et, aussi, d’analyser le partage des résultats de la recherche entre ces acteurs.

Cette dernière question se pose de plus en plus depuis que l’État français mène une politique en faveur d’une science plus ouverte, transparente et accessible à tous. Depuis 2019, une étude de terrain est menée pour analyser l’application des principes de la science ouverte en bioéconomie.

Des entretiens menés auprès de porteurs de projets révèlent un domaine de recherche émergent, large et complexe. Tandis que les parties prenantes ont recours à des stratégies plus ou moins ouvertes pour partager les résultats de leurs travaux en recherche et développement, les résultats montrent que la mise en œuvre des principes de la science ouverte peut être impactée.

La discussion porte sur la nécessité d’être nuancé dans l’ouverture de l’information scientifique pour garantir les intérêts des partenaires industriels, et par ailleurs pour assurer le bon développement de la bioéconomie sur le territoire des Hauts-de-France.

URL : Enjeux, pratiques et stratégies d’ouverture de l’information scientifique en bioéconomie

Original location : https://revue-cossi.numerev.com/articles/revue-12/3101-enjeux-pratiques-et-strategies-d-ouverture-de-l-information-scientifique-en-bioeconomie

What’s trust got to do with research: why not accountability?

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Authors : Morẹ́nikẹ́ Oluwátóyìn Foláyan, Bridget Haire

This paper explores the intricate dynamics of trust, power, and vulnerability in the relationship between researchers and study participants/communities in the field of bioethics.

The power and knowledge imbalances between researchers and participants create a structural vulnerability for the latter. While trust-building is important between researchers and study participants/communities, the consenting process can be challenging, often burdening participants with power abrogation.

Trust can be breached. The paper highlights the contractual nature of the research relationship and argues that trust alone cannot prevent exploitation as power imbalances and vulnerabilities persist. To protect participants, bioethics guidance documents promote accountability and ethical compliance.

These documents uphold fairness in the researcher-participant relationship and safeguard the interests of socially vulnerable participants. The paper also highlights the role of shared decision-making and inclusive deliberation with diverse stakeholders and recommends that efforts should be made by researchers to clarify roles and responsibilities, while research regulatory agents should transform the research-participant relationship into a legal-based contract governed by accountability principles.

While trust remains important, alternative mechanisms may be needed to ensure ethical research practices and protect the interests of participants and communities. Striking a balance between trust and accountability is crucial in this regard.

URL : What’s trust got to do with research: why not accountability?

DOI : https://doi.org/10.3389/frma.2023.1237742

How do journals publishing palliative and end-of-life care research report ethical approval and informed consent?

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Authors : Tove Godskesen, Knut Jørgen Vie, William Bülow, Bodil Holmberg, Gert Helgesson, Stefan Eriksson

This study explores how papers published in international journals in palliative and end-of-life care report ethical approval and informed consent. A literature search following PRISMA guidelines was conducted in PubMed, the Web of Science Core Collection, Scopus, the ProQuest Social Science Premium Collection, PsycINFO, and the Cumulative Index to Nursing and Allied Health Literature (CINAHL). A total of 169 empirical studies from 101 journals were deductively coded and analysed.

The results showed that 5% of publications provided no information on ethical approval, 12% reported minimal information, 56% reported rudimentary information, and 27% reported comprehensive details. We also found that 13% did not report any information on informed consent, 17% reported minimal information, 50% reported rudimentary information, and 19% reported comprehensive details.

The prevalence of missing and incomplete ethical statements and inadequate reporting of informed consent processes in recent publications raises concerns and highlights the need for improvement. We suggest that journals advocate high reporting standards and potentially reject papers that do not meet ethical requirements, as this is the quickest path to improvement.

URL : How do journals publishing palliative and end-of-life care research report ethical approval and informed consent?

DOI : https://doi.org/10.1002/leap.1580

Analytical code sharing practices in biomedical research

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Authors : Nitesh Kumar Sharma, Ram Ayyala, Dhrithi Deshpande et al.

Data-driven computational analysis is becoming increasingly important in biomedical research, as the amount of data being generated continues to grow. However, the lack of practices of sharing research outputs, such as data, source code and methods, affects transparency and reproducibility of studies, which are critical to the advancement of science. Many published studies are not reproducible due to insufficient documentation, code, and data being shared.

We conducted a comprehensive analysis of 453 manuscripts published between 2016-2021 and found that 50.1% of them fail to share the analytical code. Even among those that did disclose their code, a vast majority failed to offer additional research outputs, such as data. Furthermore, only one in ten papers organized their code in a structured and reproducible manner. We discovered a significant association between the presence of code availability statements and increased code availability (p=2.71×10−9).

Additionally, a greater proportion of studies conducting secondary analyses were inclined to share their code compared to those conducting primary analyses (p=1.15*10−07). In light of our findings, we propose raising awareness of code sharing practices and taking immediate steps to enhance code availability to improve reproducibility in biomedical research.

By increasing transparency and reproducibility, we can promote scientific rigor, encourage collaboration, and accelerate scientific discoveries. We must prioritize open science practices, including sharing code, data, and other research products, to ensure that biomedical research can be replicated and built upon by others in the scientific community.

URL : Analytical code sharing practices in biomedical research

DOI : https://doi.org/10.1101/2023.07.31.551384

Open(ing) Access: Top Health Publication Availability to Researchers in Low- and Middle-Income Countries

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Authors : John L. Kilgallon, Saumya Khanna, Tanujit Dey, Timothy R. Smith, Kavitha Ranganathan

Introduction

Improving access to information for health professionals and researchers in low- and middle-income countries (LMICs) is under-prioritized. This study examines publication policies that affect authors and readers from LMICs.

Methods

We used the SHERPA RoMEO database and publicly available publishing protocols to evaluate open access (OA) policies, article processing charges (APCs), subscription costs, and availability of health literature relevant to authors and readers in LMICs.

Categorical variables were summarized using frequencies with percentages. Continuous variables were reported with median and interquartile range (IQR).

Hypothesis testing procedures were performed using Wilcoxon rank sum tests, Wilcoxon rank sum exact tests, and Kruskal-Wallis test.

Results

A total of 55 journals were included; 6 (11%) were Gold OA (access to readers and large charge for authors), 2 (3.6%) were subscription (charge for readers and small/no charge for authors), 4 (7.3%) were delayed OA (reader access with no charge after embargo), and 43 (78%) were hybrid (author’s choice).

There was no significant difference between median APC for life sciences, medical, and surgical journals ($4,850 [$3,500–$8,900] vs. $4,592 [$3,500–$5,000] vs. $3,550 [$3,200–$3,860]; p = 0.054). The median US individual subscription costs (USD/Year) were significantly different for life sciences, medical, and surgical journals ($259 [$209–$282] vs. $365 [$212–$744] vs. $455 [$365–$573]; p = 0.038), and similar for international readers.

A total of seventeen journals (42%) had a subscription price that was higher for international readers than for US readers.

Conclusions

Most journals offer hybrid access services. Authors may be forced to choose between high cost with greater reach through OA and low cost with less reach publishing under the subscription model under current policies.

International readers face higher costs. Such hindrances may be mitigated by a greater awareness and liberal utilization of OA policies.

URL : Open(ing) Access: Top Health Publication Availability to Researchers in Low- and Middle-Income Countries

DOI : https://doi.org/10.5334/aogh.3904

Biomedical supervisors’ role modeling of open science practices

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Authors : Tamarinde L Haven, Susan Abunijela, Nicole Hildebrand

Supervision is one important way to socialize Ph.D. candidates into open and responsible research. We hypothesized that one should be more likely to identify open science practices (here publishing open access and sharing data) in empirical publications that were part of a Ph.D. thesis when the Ph.D. candidates’ supervisors engaged in these practices compared to those whose supervisors did not or less often did.

Departing from thesis repositories at four Dutch University Medical centers, we included 211 pairs of supervisors and Ph.D. candidates, resulting in a sample of 2062 publications. We determined open access status using UnpaywallR and Open Data using Oddpub, where we also manually screened publications with potential open data statements. Eighty-three percent of our sample was published openly, and 9% had open data statements.

Having a supervisor who published open access more often than the national average was associated with an odds of 1.99 to publish open access. However, this effect became nonsignificant when correcting for institutions. Having a supervisor who shared data was associated with 2.22 (CI:1.19–4.12) times the odds to share data compared to having a supervisor that did not.

This odds ratio increased to 4.6 (CI:1.86–11.35) after removing false positives. The prevalence of open data in our sample was comparable to international studies; open access rates were higher. Whilst Ph.D. candidates spearhead initiatives to promote open science, this study adds value by investigating the role of supervisors in promoting open science.

URL : Biomedical supervisors’ role modeling of open science practices

DOI : https://doi.org/10.7554/eLife.83484

Attitudes Toward Providing Open Access for Use of Biospecimens and Health Records: A Cross-Sectional Study from Jordan

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Authors : Kamal M Al-Shami, Wesam S Ahmed, Karem H Alzoubi

Purpose

Biospecimen repositories and big data generated from clinical research are critically important in advancing patient-centered healthcare. However, ethical considerations arising from reusing clinical samples and health records for subsequent research pose a hurdle for big-data health research. This study aims to assess the public’s opinions in Jordan toward providing blanket consent for using biospecimens and health records in research.

Participants and Methods

A cross-sectional study utilizing a self-reported questionnaire was carried out in different cities in Jordan, targeting adult participants. Outcome variables included awareness of clinical research, participation in clinical research, and opinions toward providing open access to clinical samples and records for research purposes.

Descriptive analysis was utilized for reporting the outcome as frequency (percentages) out of the total responses. Univariate and multivariate logistic regression were used to investigate the association between independent variables and the outcome of interest.

Results

A total of 1033 eligible participants completed the questionnaire. Although the majority (90%) were aware of clinical research, only 24% have ever participated in this type of research. About half (51%) agreed on providing blanket consent for the use of clinical samples, while a lower percentage (43%) agreed on providing open access to their health records.

Privacy concerns and lack of trust in the researcher were cited as major barriers to providing blanket consent. Participation in clinical research and having health insurance were predictors for providing open access to clinical samples and records.

Conclusion

The lack of public trust in Jordan toward data privacy is evident from this study. Therefore, a governance framework is needed to raise and maintain the public’s trust in big-data research that warrants the future reuse of clinical samples and records. As such, the current study provides valuable insights that will inform the design of effective consent protocols required in data-intensive health research.

URL : Attitudes Toward Providing Open Access for Use of Biospecimens and Health Records: A Cross-Sectional Study from Jordan

DOI : https://doi.org/10.2147/PPA.S402769