Addressing ethical challenges in the Genetics Substudy of the National Eye Survey of Trinidad and Tobago (GSNESTT).

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

Health system dynamics analysis of eyecare services in Trinidad and Tobago and progress towards Vision 2020 Goals

Avoidable blindness is an important global public health concern. This study aimed to assess Trinidad and Tobago's progress towards achieving the Pan American Health Organization, 'Strategic Framework for Vision 2020: The Right to Sight-Caribbean Region,' indicators through comprehensive review of the eyecare system, in order to facilitate health system priority setting. We administered structured surveys to six stakeholder groups, including eyecare providers, patients and older adult participants in the National Eye Survey of Trinidad and Tobago. We reviewed reports, registers and policy documents, and used a health system dynamics framework to synthesize data. In 2014, the population of 1.3 million were served by a pluralistic eyecare system, which had achieved 14 out of 27 Strategic Framework indicators. The Government provided free primary, secondary and emergency eyecare services, through 108 health centres and 5 hospitals (0.26 ophthalmologists and 1.32 ophthalmologists-in-training per 50 000 population). Private sector optometrists (4.37 per 50 000 population), and ophthalmologists (0.93 per 50 000 population) provided 80% of all eyecare. Only 19.3% of the adult population had private health insurance, revealing significant out-of-pocket expenditure. We identified potential weaknesses in the eyecare system where investment might reduce avoidable blindness. These included a need for more ophthalmic equipment and maintenance in the public sector, national screening programmes for diabetic retinopathy, retinopathy of prematurity and neonatal eye defects, and pathways to ensure timely and equitable access to subspecialized surgery. Eyecare for older adults was responsible for an estimated 9.5% (US$22.6 million) of annual health expenditure. This study used the health system dynamics framework and new data to identify priorities for eyecare system strengthening. We recommend this approach for exploring potential health system barriers to addressing avoidable blindness, and other important public health problems