Person-oriented research ethics: integrating relational and everyday ethics in research

ABSTRACT

Research ethics is often understood by researchers primarily through the regulatory framework reflected in the research ethics review process. This regulatory understanding does not encompass the range of ethical considerations in research, notably those associated with the relational and everyday aspects of human subject research. In order to support researchers in their effort to adopt a broader lens, this article presents a “person-oriented research ethics” approach. Five practical guideposts of person-oriented research ethics are identified, as follows: (1) respect for holistic personhood; (2) acknowledgement of lived world; (3) individualization; (4) focus on researcher-participant relationships; and (5) empowerment in decision-making. These guideposts are defined and illustrated with respect to different aspects of the research process (e.g., research design, recruitment, data collection). The person-oriented research ethics approach provides a toolkit to individual researchers, research groups, and research institutions in both biomedical and social science research wishing to expand their commitment to ethics in research.

KEYWORDS:

• Human subjects ethics
• informed consent
• justice in research
• public trust
• research ethics
• vulnerable populations

Acknowledgments

This project is funded by a Kids Brain Health Network Core Award, the NeuroEthics Excellence and Societal Innovation Core (NESIC; Racine co-PI). Dr. Cascio is additionally funded by the Angelo-Pizzagalli Scholarship of the IRCM Foundation. Dr. Racine is additionally funded by a FRQ-S senior scholar career award. Thank you to current and former members of the Neuroethics Research Unit and all others who provided feedback on this project, and especially to Jelena Poleksic for reviewing and proofreading the final manuscript.

Notes

¹ Following an initial paradigm of “researcher paternalism.”

Additional information

Funding

This work was supported by the Fonds de Recherche du Québec--Santé (30998); Institut de recherches cliniques de Montréal (Angelo-Pizzagalli Foundation Scholarship); Kids Brain Health Network (NeuroEthics Excellence and Societal Innovation Core).