چکیده (انگلیسی):

Background: The conduct of international collaborative genomics research raises distinct ethical challenges that
require special consideration, especially if conducted in settings that are research-naïve or resource-limited. Although
there is considerable literature on these issues, there is a dearth of literature chronicling approaches taken
to address these issues in the field. Additionally no previous ethical guidelines have been developed to support
similar research in Trinidad and Tobago.
Methods: A literature review was undertaken to identify strategies used to address common ethical issues relevant
to human genetics and genomics research in research-naïve or resource-limited settings. Strategies identified
were combined with novel approaches to develop a culturally appropriate, multifaceted strategy to address
potential challenges in the Genetics Substudy of the National Eye Survey of Trinidad and Tobago (GSNESTT).
Results: Regarding the protection of study participants, we report a decision to exclude children as participants;
the use of a Community Engagement and Sensitization Strategy to increase the genetic literacy of the target population;
the involvement of local expertise to ensure cultural sensitivity and to address potential comprehension
barriers in informed consent; and an audit of the informed consent process to ensure valid consent. Concerning
the regulation of the research, we report on ethics approvals from relevant authorities; a Materials Transfer
Agreement to guide sample ownership and export; and a Sample Governance Committee to oversee data use
and data access. Finally regarding the protection of the interests of scientists from the host country, we report
on capacity building efforts to ensure that local scientists have access to data collected through the project and
appropriate recognition of their contributions in future publications.
Conclusion: This paper outlines an ethical framework for the conduct of population-based genetics and genomics
research in Trinidad and Tobago; highlights common issues arising in the field and strategies to address these.
© 2016 The Authors. Published by Elsevier B.V. This is an open access article under the CC BY-NC-ND license
(http://creativecommons.org/licenses/by-nc-nd/4.0/).