New publication: Roles and responsibilities in stem cell research: a focus group study with stem cell researchers and patients
The ethics surrounding stem cell research has been a heavily debated topic. Some of the biggest concerns surround the roles and responsibilities. What happens when something goes wrong? And who handles policy challenges? How can patients and researchers contribute to the responsible innovation of stem cell research? Currently, neither the patient nor the researcher can satisfactorily answer these questions. This uncertainty in stem cell ethics can often hinder the ability to conduct responsible research and could undermine the trust between science and the public.
In this study, Lars Assen and colleagues determined what aspects of stem cell research patients feel responsible for, what role they see for themselves, and what aspects of stem cell research scientists think they are responsible for, and what actions can be taken based on that. Uncovering the roles and responsibilities in stem cell research can help to improve responsible research conduct and bridge the gap between scientists, patients, and the public. To achieve this, Lars Assen and his colleagues ran focus groups with Dutch patients with chronic lower back pain and within the iPSpine consortium, serving as a showcase due to their work with stem cell-based technologies.
From these focus groups, 4 key themes concerning stem cell ethics emerged: (1) roles and responsibilities in the laboratory, (2) responsibilities of and towards patients and the public, (3) the role of regulation, and (4) structural hurdles of responsibility.
Through the exploration of these themes, Lars Assen puts forward a couple suggestions to improve research integrity and establish a link between science and society. For the research community grant application procedures could be optimized, pressure driven by the scientific community itself to publish (positive) results should be diminished, and researchers should be supported to communicate the process and the results of research. The patients involved also saw a role for themselves to be part of the project’s communication activities and are eager to form a bridge between science and the public.
Taken together, both parties can learn from each other, building trust in science and connecting science to society.
Roles and responsibilities in stem cell research: a focus group study with stem cell researchers and patients
Authors: Lars S Assen*, Karin R Jongsma, Rosario Isasi, Marianna A Tryfonidou & Annelien L Bredenoord
First published: 18 May 2022
Background: The perspectives of researchers and patients regarding roles and responsibilities in stem cell research are rarely studied, but these could offer insights about responsible research conduct. Method: We have conducted a qualitative study consisting of focus groups with both early- (n = 7) and late-career stem cell researchers (n = 11) that are primarily based in Europe, and with Dutch patients with chronic lower back pain (n = 9). These focus groups have been analyzed thematically. Results: Four themes were identified: 1) roles and responsibilities in the laboratory, 2) responsibilities of and toward patients and the public, 3) the role of regulation and 4) structural hurdles for responsibility. Discussion: The results suggest that responsible research conduct could be improved by addressing grant application procedures, publication pressure and by providing support of dissemination activities for researchers. Conclusion: Responsibility in stem cell research could be enhanced by embracing open science initiatives and targeted training.
Funding information: This project has received funding from the European Union’s Horizon 2020 research and innovation program iPSpine under grant agreement no. 825925. MAT receives funding from the Dutch Arthritis Society (LLP22) and is a scientific advisor of SentryX. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript.