Ethical perspectives of the involvement of vulnerable populations in health research

Abstract Background Public involvement in research has potential to transform public health research processes and outcomes, as well as contribute to sustainable collaborations between academia and the civil society. However, this all relies on public involvement being conducted in an ethical and inclusive way, especially when involving representatives from vulnerable populations. Methods In this empirically informed theoretical reflection, ethical perspectives on involvement of vulnerable populations in health research were explored using data collected within a public involvement evaluation project. By analysing observational and longitudinal qualitative data from research projects involving public representatives from vulnerable groups, ethical aspects were identified. Results Responsibility and decision-making appeared as important ethical aspects, where laws and regulations conflicted with involvement ideals. Similarly, reimbursement and recognition for public contributors became an ethical issue when facing legislation and bureaucracy, especially when involving children or refugees. Another ethical aspect concerned researchers’ concerns in balancing involvement and protection of vulnerable groups, especially when involving contributors living under unstable circumstances. Finally, effectively communicating around research and involvement in an accessible way, for contributors to be involved but not burdened, was a challenge for researchers. Conclusions Public involvement of vulnerable populations led to ethical challenges related to conflicting ideals and practical realities, including balancing involvement and protection of contributors. This highlighted a need for ethical guidance to support ethical decision-making and practice. The findings are used to guide the development of an ethical framework for decision-making in public involvement. Key messages • Researchers involving public contributors from vulnerable groups face ethical challenges which causes barriers to involvement. • There is need for guidance on ethical decision-making for researchers involving representatives from vulnerable groups in research.


Background:
Public involvement in research has potential to transform public health research processes and outcomes, as well as contribute to sustainable collaborations between academia and the civil society. However, this all relies on public involvement being conducted in an ethical and inclusive way, especially when involving representatives from vulnerable populations.

Methods:
In this empirically informed theoretical reflection, ethical perspectives on involvement of vulnerable populations in health research were explored using data collected within a public involvement evaluation project. By analysing observational and longitudinal qualitative data from research projects involving public representatives from vulnerable groups, ethical aspects were identified.

Results:
Responsibility and decision-making appeared as important ethical aspects, where laws and regulations conflicted with involvement ideals. Similarly, reimbursement and recognition for public contributors became an ethical issue when facing legislation and bureaucracy, especially when involving children or refugees. Another ethical aspect concerned researchers' concerns in balancing involvement and protection of vulnerable groups, especially when involving contributors living under unstable circumstances. Finally, effectively communicating around research and involvement in an accessible way, for contributors to be involved but not burdened, was a challenge for researchers.

Conclusions:
Public involvement of vulnerable populations led to ethical challenges related to conflicting ideals and practical realities, including balancing involvement and protection of contributors. This highlighted a need for ethical guidance to support ethical decision-making and practice. The findings are used to guide the development of an ethical framework for decisionmaking in public involvement. Key messages: Researchers involving public contributors from vulnerable groups face ethical challenges which causes barriers to involvement.
There is need for guidance on ethical decision-making for researchers involving representatives from vulnerable groups in research. Like most of western countries France has been severely hit by the first wave of covid during Spring 2020. France managed to get through it thanks to a confinement, full dedication of health and << first line >> workers and of course the excellency of its bureaucracy. France is now famous for its digitalized self-made one-hour-walk certificate. It is however less-known for its MARSes, acronym for << message d'alerte rapide sanitaire >> or quick sanitary warning messages that got usually sent to hospitals and nursing homes... on Friday nights or weekends. Some lawyers saluted the method as an innovative and modern process that adapted quickly the response to the evolution of the situation shifting from hard rules written in the due process of law to an era of properly crafted regulations. Professionnals were less enthusiastic regarding this matter. It was less an issue of professional curtesy expected form a central state towards civil servants than one related to the content of the messages. Quality varied depending on the news. Some messages imposed very clear and strict rules such as: << no visit under any circumstances in nursing homes >> or later when tests were available, << should any cluster appear, all residents must be tested. >> However, all messages ended the same and ritual way: << Provisions included in this message must be performed and adapted under direction supervision and adapted to the context of the institution >>. Interestingly enough the way the text was written rose questions: If the rule is clear, why should it be adapted? The rule enters in conflict with other preexisting rules. Which one should apply? Classical legal and political theory are of great help sorting formal issues. Hume's non ethical cognitivism and Kant's categorical imperative were used redesigning the working frame. Since accountability was for direction to bear, so was it for it to draw fair and acceptable solutions in due respect of democratic principles. Key messages: Limit cases prove that rules are unsufficient in decision making.
iii502 European Journal of Public Health, Volume 32 Supplement 3, 2022