22 March 2018

Ariel Cascio and Eric Racine have recently published a paper on the model of person-oriented research ethics more broadly, which is the background for this project about person-oriented research ethics and autism. You can read the article here. If you cannot access the article, you can read the “accepted manuscript” version for free here.

TITLE: Person-Oriented Research Ethics: Integrating Relational and Everyday Ethics in Research

AUTHORS: M. Ariel Cascio, Ph.D. & Eric Racine, Ph.D.

ABSTRACT: Person-Oriented Research Ethics: Integrating Relational and Everyday Ethics in Research M. Ariel Cascio, Ph.D.a, b & Eric Racine, Ph.D.a, b, c, daNeuroethics Research Unit, Institut de recherches cliniques de Montréal (IRCM), Montréal, Québec, Canada ; bNeurology and Neurosurgery, McGill University, Montréal, Québec, Canada; cDivision of Experimental Medicine (Biomedical Ethics Unit), McGill University, Montréal, Québec, Canada; dDepartment of Medicine and Department of Social and Preventative Medicine, Université de Montréal, Montréal, Québec, Canada 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 paper presents a “person-oriented research ethics” approach. Five practical guideposts of person-oriented research ethics are identified: (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: Research Ethics; Human Subjects Ethics; Informed Consent; Justice in Research; Public Trust; Vulnerable Populations: 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 paper presents a “person-oriented research ethics” approach. Five practical guideposts of person-oriented research ethics are identified: (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.

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