Six academics from The University of the West Indies (The UWI) have co-authored a landmark paper that explores a framework for the ethical and socially acceptable conduct of genomics research in the Caribbean. The paper, prepared by Professors Donald Simeon, Simon Anderson, Dr. Lester Shields, Dr. Jasneth Mullings, Dr. Averell Bethelmy, Dr. Anna Kasafi Perkins and their US colleagues, Jyothsna Bolleddula and Professor Pilar Ossorio, is featured in The Lancet Regional Health-Americas, the world-leading public health journal focused on six regions of the world.
Their paper titled, No person left behind: Mapping the health policy landscape for genomics research in the Caribbean Health Policy, addresses the Caribbean’s under-representation as a geographical region in the field of genomics. According to the paper’s summary, “Such under-representation may result in Caribbean people being underserved by precision medicine and other public health benefits of genomics”. Issues of social justice need to be addressed by encouraging the inclusion of diverse Caribbean communities in genomics research.
Commenting on the collaboration on the paper, Dr. Anna Kasafi Perkins, Senior Programme Officer at the Quality Assurance Unit in the Office of the Board for Undergraduate Studies at The UWI said, “It grew out of the work of the Ethics, Legal and Social Implications (ELSI) Working Group for the H3ECaribbean (Human Health Heredity and Environment Caribbean) Initiative”, which builds on the lessons and success of H3Africa project. That H3ECaribbean working group is co-chaired by Professor Donald Simeon and Dr Perkins, and Professor Simon Anderson is a member of the H3E Caribbean’s leadership team. He also co-leads the Glasgow Caribbean Centre for Development Research, a UWI and University of Glasgow partnership.
Rachel Sandison, Deputy Vice-Chancellor of the University of Glasgow, extended her congratulations on the paper saying, “I am delighted to see this publication in the Lancet which stems from co-creative interdisciplinary networks across the Caribbean. The Glasgow Caribbean Centre for Development Research looks forward to the establishment of the Human Hereditary, Health and the Environment (H3E) Caribbean project for the benefit of all in the region.”
Dr. Tomlin Paul, former Dean of the Faculty of Medical Sciences at The UWI Mona Campus, who also co-leads H3ECaribbean commended the authors noting, “This Lancet publication heralds the H3ECaribbean initiative and its ambitious social justice goal of promoting the inclusion of diverse Caribbean communities in genomics research. The paper, while laying out a coherent framework for managing such inclusion in an ethical, fair and transparent manner, also provides advocacy and stimulus for the region to continue its work on building a robust ethics governance system. Such a system will benefit investments in new knowledge generation for improving Caribbean public health and wellbeing. The initiative is grateful to the ELSI working group for articulating and sharing this vision.”
In the paper, the researchers take account of the cultural peculiarities of the Caribbean region related to conducting genomics research by exploring research ethics issues identified in indigenous communities in North America, Small Island Developing States, and similar endeavours from the African continent. The framework they present guides interacting with local community leaders, as well as detailing steps for obtaining informed consent from all participants. Specifically, the authors outline the methods to ensure effective interaction and enforce full transparency with study participants to combat historical neglect and potential exploitation when working with under-represented communities in the Caribbean.
More information on the H3E Caribbean Initiative can be accessed here.