Ethical and research governance approval across Europe: Experiences from three European palliative care studies.


Journal

Palliative medicine
ISSN: 1477-030X
Titre abrégé: Palliat Med
Pays: England
ID NLM: 8704926

Informations de publication

Date de publication:
06 2020
Historique:
pubmed: 19 3 2020
medline: 29 4 2021
entrez: 19 3 2020
Statut: ppublish

Résumé

Research requires high-quality ethical and governance scrutiny and approval. However, when research is conducted across different countries, this can cause challenges due to the differing ethico-legal framework requirements of ethical boards. There is no specific guidance for research which does not involve non-medicinal products. To describe and address differences in ethical and research governance procedures applied by research ethics committees for non-pharmaceutical palliative care studies including adult participants in collaborative European studies. An online survey analysed using descriptive statistics. Eighteen principal investigators in 11 countries conducting one of three European-funded studies. There was variation in practice including whether ethical approval was required. The time to gain full approvals differed with the United Kingdom having governance procedures that took the longest time. Written consent was not required in all countries nor were data safety monitoring committees for trials. There were additional differences in relation to other data management issues. Researchers need to take the differences in research approval procedures into account when planning studies. Future research is needed to establish European-wide recommendations for policy and practice that dovetail ethical procedures and enhance transnational research collaborations.

Sections du résumé

BACKGROUND
Research requires high-quality ethical and governance scrutiny and approval. However, when research is conducted across different countries, this can cause challenges due to the differing ethico-legal framework requirements of ethical boards. There is no specific guidance for research which does not involve non-medicinal products.
AIM
To describe and address differences in ethical and research governance procedures applied by research ethics committees for non-pharmaceutical palliative care studies including adult participants in collaborative European studies.
DESIGN
An online survey analysed using descriptive statistics.
SETTING/PARTICIPANTS
Eighteen principal investigators in 11 countries conducting one of three European-funded studies.
RESULTS
There was variation in practice including whether ethical approval was required. The time to gain full approvals differed with the United Kingdom having governance procedures that took the longest time. Written consent was not required in all countries nor were data safety monitoring committees for trials. There were additional differences in relation to other data management issues.
CONCLUSION
Researchers need to take the differences in research approval procedures into account when planning studies. Future research is needed to establish European-wide recommendations for policy and practice that dovetail ethical procedures and enhance transnational research collaborations.

Identifiants

pubmed: 32186242
doi: 10.1177/0269216320908774
pmc: PMC7521003
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

817-821

Références

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Auteurs

Nancy Preston (N)

International Observatory on End of Life Care, Lancaster University, Lancaster, UK.

Johannes Jm van Delden (JJ)

Universitair Medisch Centrum Utrecht, Utrecht, The Netherlands.

Francesca Ingravallo (F)

University of Bologna, Bologna, Italy.

Sean Hughes (S)

International Observatory on End of Life Care, Lancaster University, Lancaster, UK.

Jeroen Hasselaar (J)

Radboud University, Nijmegen, The Netherlands.

Agnes van der Heide (A)

Erasmus MC, Rotterdam, The Netherlands.

Lieve Van den Block (L)

VUB-UGhent End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB), Brussels, Belgium.

Lesley Dunleavy (L)

International Observatory on End of Life Care, Lancaster University, Lancaster, UK.

Marieke Groot (M)

Radboud University, Nijmegen, The Netherlands.

Agnes Csikos (A)

Institute of Primary Care, University of Pécs Medical School, Pécs, Hungary.

Sheila Payne (S)

International Observatory on End of Life Care, Lancaster University, Lancaster, UK.

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Classifications MeSH