Archives des mots-clés : bioethics

More ethics in the laboratory, please! Scientists’ perspectives on ethics in the preclinical phase

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Authors : Paola Buedo, Eugenia Prieto, Jolanta Perek-Białas, Idalina Odziemczyk-
Stawarz, Marcin Waligora

In recent years there have been calls to improve ethics in preclinical research. Promoting ethics in preclinical research should consider the perspectives of scientists. Our study aims to explore researchers’ perspectives on ethics in the preclinical phase.

Using interviews and focus groups, we collected views on ethical issues in preclinical research from experienced (n = 11) and early-stage researchers (ESRs) (n = 14) working in a gene therapy and regenerative medicine consortium. A recurring theme among ESRs was the impact of health-related preclinical research on climate change.

They highlighted the importance of strengthening ethics in relations within the scientific community. Experienced researchers were focused on technicalities of methods used in preclinical research. They stressed the need for more safeguards to protect the sensitive personal data they work with.

Both groups drew attention to the importance of the social context of research and its social impact. They agreed that it is important to be socially responsible – to be aware of and be sensitive to the needs and views of society.

This study helps to identify key ethical challenges and, when combined with more data, can ultimately lead to informed and evidence-based improvements to existing regulations.

URL : More ethics in the laboratory, please! Scientists’ perspectives on ethics in the preclinical phase

DOI : https://doi.org/10.1080/08989621.2023.2294996

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

Balancing the local and the universal in maintaining ethical access to a genomics biobank

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Authors : Catherine Heeney, Shona M. Kerr

Background

Issues of balancing data accessibility with ethical considerations and governance of a genomics research biobank, Generation Scotland, are explored within the evolving policy landscape of the past ten years. During this time data sharing and open data access have become increasingly important topics in biomedical research.

Decisions around data access are influenced by local arrangements for governance and practices such as linkage to health records, and the global through policies for biobanking and the sharing of data with large-scale biomedical research data resources and consortia.

Methods

We use a literature review of policy relevant documents which apply to the conduct of biobanks in two areas: support for open access and the protection of data subjects and researchers managing a bioresource.

We present examples of decision making within a biobank based upon observations of the Generation Scotland Access Committee. We reflect upon how the drive towards open access raises ethical dilemmas for established biorepositories containing data and samples from human subjects.

Results

Despite much discussion in science policy literature about standardisation, the contextual aspects of biobanking are often overlooked. Using our engagement with GS we demonstrate the importance of local arrangements in the creation of a responsive ethical approach to biorepository governance.

We argue that governance decisions regarding access to the biobank are intertwined with considerations about maintenance and viability at the local level. We show that in addition to the focus upon ever more universal and standardised practices, the local expertise gained in the management of such repositories must be supported.

Conclusions

A commitment to open access in genomics research has found almost universal backing in science and health policy circles, but repositories of data and samples from human subjects may have to operate under managed access, to protect privacy, align with participant consent and ensure that the resource can be managed in a sustainable way.

Data access committees need to be reflexive and flexible, to cope with changing technology and opportunities and threats from the wider data sharing environment. To understand these interactions also involves nurturing what is particular about the biobank in its local context.

URL : Balancing the local and the universal in maintaining ethical access to a genomics biobank

DOI : https://doi.org/10.1186/s12910-017-0240-7

The false academy: predatory publishing in science and bioethics

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Authors : Stefan Eriksson, Gert Helgesson

This paper describes and discusses the phenomenon ‘predatory publishing’, in relation to both academic journals and books, and suggests a list of characteristics by which to identify predatory journals. It also raises the question whether traditional publishing houses have accompanied rogue publishers upon this path.

It is noted that bioethics as a discipline does not stand unaffected by this trend. Towards the end of the paper it is discussed what can and should be done to eliminate or reduce the effects of this development.

The paper concludes that predatory publishing is a growing phenomenon that has the potential to greatly affect both bioethics and science at large.

Publishing papers and books for profit, without any genuine concern for content, but with the pretence of applying authentic academic procedures of critical scrutiny, brings about a worrying erosion of trust in scientific publishing.

URL : The false academy: predatory publishing in science and bioethics

DOI :10.1007/s11019-016-9740-3