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International code of conduct for genomic and health-related data sharing
Citation
Chalmers, D, Regulatory and Ethics Working Group, Global Alliance for Genomics & Health and S Sugano, International code of conduct for genomic and health-related data sharing, The HUGO Journal, 8, (1) pp. 1-4. ISSN 1877-6566 (2014) [Refereed Article]
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Copyright Statement
Copyright 2014 Sugano; licensee Springer. Licensed under Creative Commons Attribution 4.0 International (CC BY 4.0) https://creativecommons.org/licenses/by/4.0/
DOI: doi:10.1186/1877-6566-8-1
Abstract
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. Such a framework will facilitate
global science and responsible research conduct.
This International Code of Conduct provides guidance
for the responsible sharing of genomic and healthrelated
data. In particular, it is guided by Article 27 of
the 1948 Universal Declaration of Human Rights. Article
27 guarantees the rights of every individual in the world
"to share in scientific advancement and its benefits", to
freely engage in responsible scientific inquiry, and at the
same time "to the protection of the moral and material
interests resulting from any scientific…production of
which [a person] is the author." 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.
The Code also: (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.
The value of this Code is that it: offers political and legal
dimensions that reach beyond the moral appeals of bioethics
and provides a more robust governance framework for
genomic and health-related data sharing; speaks to groups
and institutions, not just individuals; stresses the progressive
realization of duties, urging action by governments,
industry, funders, and researchers to create an environment
for responsibly sharing data; and fosters responsible
research in health by offering stronger protection in critical
areas.
Item Details
Item Type: | Refereed Article |
---|---|
Keywords: | data sharing, health, international code |
Research Division: | Law and Legal Studies |
Research Group: | Public law |
Research Field: | Public law not elsewhere classified |
Objective Division: | Expanding Knowledge |
Objective Group: | Expanding knowledge |
Objective Field: | Expanding knowledge in psychology |
UTAS Author: | Chalmers, D (Professor Don Chalmers) |
ID Code: | 118403 |
Year Published: | 2014 |
Deposited By: | Law |
Deposited On: | 2017-07-11 |
Last Modified: | 2017-08-21 |
Downloads: | 121 View Download Statistics |
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