Abstract
The draft to date has been developed under the auspices of the Regulatory and Ethics Working Group of the Global Alliance for Genomics and Health, in collaboration with many individuals, organizations and committees around the world.
Highlights
Preamble The sharing of scientific, genomic and health-related data for the purpose of research is of key importance in ensuring continued progress in our understanding of human health and wellbeing
New challenges raised by international, collaborative research require a principled and practical framework that brings together researchers, regulators, funders, patient groups, information technologists, and consortia to share data
Article 27 has been expanded by other enforceable international conventions and national laws, regulations, codes and policies set out in Appendix 1. This Code establishes a set of foundational principles and guidelines for responsible research conduct and oversight of research data systems, guided by the enforceable human rights of privacy, non-discrimination, and procedural fairness
Summary
Regulatory and Ethics Working Group, Global Alliance for Genomics & Health and Sumio Sugano*. The Code : (a) interprets the right to enjoy the benefits of scientific progress and its applications as being the right to engage in responsible scientific inquiry, access and share genomic and health-related data across the translation continuum, from basic research through practical applications; and (b) applies the right to benefit from the protection of the moral and material interests resulting from scientific productions to health-related research by developing rights for data producers. Be a tool for the evaluation of research by research Guidelines and core elements for responsible data ethics committees Application This Code may be adopted and implemented by organizations and bodies involved in genomic and health related data sharing. They facilitate compliance with the obligations set by international and national law and policies
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