domingo, 31 de agosto de 2014

A human rights approach to an international code of conduct for genomic and clinical data sharing - Springer

A human rights approach to an international code of conduct for genomic and clinical data sharing - Springer

Genomics & Health Impact Update

text: Genomics & Health Impact Update; background:Share data with DNA, Ebola, Salmonella, toddler looking out a window



Genomic Data Sharing: Accelerating Discovery & Translation

Share Data and DNA on a charlkboard
Data use under the NIH GWAS data sharing policy and future directionsExternal Web Site Icon
Dina N Paltoo, et al. Nature, August 27, 2014
Unpublished genomic data–how to share?External Web Site Icon
Shreeya Nanda and Maria K Kowalczuk BMC Genomics (2014)
Human Genetics

A human rights approach to an international code of conduct for genomic and clinical data sharing

Abstract

Fostering data sharing is a scientific and ethical imperative. Health gains can be achieved more comprehensively and quickly by combining large, information-rich datasets from across conventionally siloed disciplines and geographic areas. While collaboration for data sharing is increasingly embraced by policymakers and the international biomedical community, we lack a common ethical and legal framework to connect regulators, funders, consortia, and research projects so as to facilitate genomic and clinical data linkage, global science collaboration, and responsible research conduct. Governance tools can be used to responsibly steer the sharing of data for proper stewardship of research discovery, genomics research resources, and their clinical applications. In this article, we propose that an international code of conduct be designed to enable global genomic and clinical data sharing for biomedical research. To give this proposed code universal application and accountability, however, we propose to position it within a human rights framework. This proposition is not without precedent: international treaties have long recognized that everyone has a right to the benefits of scientific progress and its applications, and a right to the protection of the moral and material interests resulting from scientific productions. It is time to apply these twin rights to internationally collaborative genomic and clinical data sharing.

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