Community Engagement in Epigenomic and Neurocognitive Research on Post-Traumatic Stress Disorder in Rwandans Exposed to the 1994 Genocide against the Tutsi: Lessons Learned
Year: 2022
Type: review
Abstract: Epigenomic and neurocognitive studies have provided new perspectives on post-traumatic stress disorder and its intergenerational transmission. This article outlines the lessons learned from community engagement (CE) in such research on Rwandan genocide survivors. A strong trauma-related response was observed within the research project-targeted community (genocide survivors) during explanation of the project. CE also revealed privacy concerns, as community members worried that any leakage of genetic/(epi)genomic data could affect not only themselves but also their close relatives. Adopting a culture of CE in the process of research implementation enables the prioritization of targeted community needs and interests. Furthermore, CE has stimulated the development of mental healthcare interventions, which married couples can apply to protect their offspring and thus truly break the cycle of inherited vulnerability.
Source: Epigenomics
Institutions: Vrije Universiteit Brussel, Radboud University Nijmegen, University of South Florida, Radboud University Medical Center, University of Rwanda, Donders Institute for Brain, Cognition and Behaviour, London School of Hygiene & Tropical Medicine, MRC/UVRI & LSHTM Uganda Research Unit, Uganda Virus Research Institute, Université Libre de Bruxelles
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W4293015264