• English
    • français
    • Deutsch
    • español
    • português (Brasil)
    • Bahasa Indonesia
    • русский
    • العربية
    • 中文
  • English 
    • English
    • français
    • Deutsch
    • español
    • português (Brasil)
    • Bahasa Indonesia
    • русский
    • العربية
    • 中文
  • Login
View Item 
  •   Home
  • Religious ethics collections
  • Protestant Ethics
  • View Item
  •   Home
  • Religious ethics collections
  • Protestant Ethics
  • View Item
JavaScript is disabled for your browser. Some features of this site may not work without it.

Browse

All of the LibraryCommunitiesPublication DateTitlesSubjectsAuthorsThis CollectionPublication DateTitlesSubjectsAuthorsProfilesView

My Account

Login

The Library

AboutNew SubmissionSubmission GuideSearch GuideRepository PolicyContact

Statistics

Most Popular ItemsStatistics by CountryMost Popular Authors

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

  • CSV
  • RefMan
  • EndNote
  • BibTex
  • RefWorks
Author(s)
Allana N. Roach
Tasanee Braithwaite
Christine Carrington
Elysse Marcellin
Subash Sharma
Aroon Hingorani
Juan P. Casas
Michael A. Hauser
R. Rand Allingham
Samuel S. Ramsewak
Rupert Bourne
Show allShow less
Keywords
Ethics
Human genomics
Genetics
ELSI
Trinidad and Tobago
Genetics
QH426-470

Full record
Show full item record
URI
http://hdl.handle.net/20.500.12424/107880
Online Access
https://doaj.org/article/de611307d1bc4ce5a12edf2f3cce2d18
Abstract
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.
Date
2016-06-01
Type
Article
Identifier
oai:doaj.org/article:de611307d1bc4ce5a12edf2f3cce2d18
2212-0661
10.1016/j.atg.2016.05.001
https://doaj.org/article/de611307d1bc4ce5a12edf2f3cce2d18
Collections
Protestant Ethics

entitlement

 
DSpace software (copyright © 2002 - 2023)  DuraSpace
Quick Guide | Contact Us
Open Repository is a service operated by 
Atmire NV
 

Export search results

The export option will allow you to export the current search results of the entered query to a file. Different formats are available for download. To export the items, click on the button corresponding with the preferred download format.

By default, clicking on the export buttons will result in a download of the allowed maximum amount of items.

To select a subset of the search results, click "Selective Export" button and make a selection of the items you want to export. The amount of items that can be exported at once is similarly restricted as the full export.

After making a selection, click one of the export format buttons. The amount of items that will be exported is indicated in the bubble next to export format.