By David Azilagbetor
Animal experiments are often justified by their potential benefits for patients. They are performed to understand diseases, test possible treatments, and generate knowledge that may eventually improve human health. Yet, when decisions are made about whether animal experiments should be ethically approved, patients themselves are rarely present in the room. This was the starting point for our study.
Deciding whether to approve an animal experiment or not is usually a task of animal research ethics committees. Their task is difficult: they are expected to weigh the potential benefits of a particular experimental endeavour against the harms imposed on the animals involved. To do this, they consider scientific quality, the 3Rs of Replacement, Reduction and Refinement, animal suffering, and the expected benefits of the work.
These committees often involve scientists, veterinarians, animal welfare representatives, legal experts and ethicists. But if one of the central claims in favour of animal research is that it may benefit patients, should patients or their representatives also have a role in evaluating those expected benefits? This question is not as simple as it may first appear. In our study, we explored this question among different groups of people: patients and carers, scientists using animals in research, members of ethics committees, life science and psychology students, and members of the public.
More than half of survey respondents supported the involvement of patients and their representatives in ethical evaluations of animal experiments. Support was higher among members of the public, students, and patients and carers, while scientists and ethics committee members expressed lower levels of agreement. We took a closer look at the reasons behind these responses. Supporters of patient participation saw patients as bringing a form of experiential knowledge that is often missing from formal review processes. They argued that patients can help clarify the real-world value of research and contribute to discussions about the balance between human benefit and animal welfare. Some participants also saw patient involvement as a way to strengthen openness, transparency and trust in animal research regulation.
Those who were more hesitant raised concerns about patients’ expertise, the representativeness of all patient groups, and the emotional burden that participation might place on patients. Indeed, these concerns should not be dismissed. In fact, they may help identify the conditions under which patient participation should take place and inform deliberations on how such concerns could be addressed if patient participation were introduced.
One important lesson from our study is that patient participation should not be treated as a simple box-ticking exercise. For it to fulfil its purpose, patients’ roles in the review process must be clearly defined. Are they there to assess the real value of expected benefits of research? To comment on the relevance of disease models used? To participate in the final harm-benefit judgement and decision-making process? Or to contribute to broader discussions about research priorities and public accountability?
Another important point is that patients should not be assumed to be automatically pro-animal experimentation. The idea that patients will always support animal experiments because they want treatments is simplistic and misleading. Although some patients may support animal research, others may also oppose it, question its relevance, or ask whether non-animal alternatives could be used in addressing their health conditions. This diversity is precisely why patients should not only be spoken about in ethical review; where appropriate, they should have opportunities to speak for themselves.
Our study concludes that the question of whether patients should have a say in the authorisation of animal experiments deserves serious ethical and practical attention. Although there are strong reasons in favour of patient participation, the legitimate concerns raised must also be carefully addressed. Ultimately, if animal research is justified partly by reference to its potential benefits for patients, then patients’ perspectives should not remain absent from the structures responsible for evaluating those justifications.
Authors: David Mawufemor Azilagbetor, Aoife Milford, David Shaw, Aylin Kümmerli, Kimi Lee Mizzi, Lester Darryl Geneviève, Eva De Clercq, Jens Gaab, and Bernice Simone Elger
Affiliations: Institute for Biomedical Ethics, University of Basel, Switzerland; Division of Clinical Psychology and Psychotherapy, Faculty of Psychology, University of Basel, Switzerland; Care and Public Health Research Institute, Universiteit Maastricht, The Netherlands; Faculty of Medicine, Laval University, Canada; VITAM – Research Center on Sustainable Health, Integrated University Health and Social Services Center of Capitale-Nationale, Laval University, Canada; Quebec Excellence Center on Ageing, Integrated University Health and Social Services Center of Capitale-Nationale, Laval University, Canada; Unit for Health Law and Humanitarian Medicine, University Center of Legal Medicine, University of Geneva, Switzerland.
Competing interests: None declared.
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