Framework for responsible sharing of genomic and health-related data

Bartha Maria Knoppers

Correspondence: Bartha M Knoppers bartha.knoppers@mcgill.ca

Global Alliance for Genomics and Health, Toronto, Canada

The HUGO Journal 2014, 8:3 doi:10.1186/s11568-014-0003-1

The electronic version of this article is the complete one and can be found online at:http://www.thehugojournal.com/content/8/1/3

Received:	15 September 2014
Accepted:	18 September 2014
Published:	17 October 2014

This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited.

Abstract

No abstract.

1 Preamble

The sharing of genomic and health-related data for biomedical research is of key importance in ensuring continued progress in our understanding of human health and wellbeing. The challenges raised by international, collaborative research require a principled but nevertheless practical Framework that brings together regulators, funders, patient groups, information technologists, industry, publishers, and research consortia to share principles about data exchange. Such a Framework will facilitate responsible research conduct.

This Framework is developed under the auspices of the Global Alliance for Genomics and Health. Its mission is to accelerate progress in human health by helping to establish a common Framework of harmonized approaches to enable effective and responsible sharing of genomic and clinical data and to catalyze data sharing projects that drive and demonstrate the value of data sharing.

This Framework provides guidance for the responsible sharing of human genomic and health-related data, including personal health data and other types of data that may have predictive power in relation to health. In particular, it highlights, and is guided by, Article 27 of the 1948Universal Declaration of Human Rights. Article 27 guarantees the rights of every individual in the world “to share in scientific advancement and its benefits” (including 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”. (As set out in Appendix 1, many other international conventions and national laws, regulations, codes and policies also guide responsible data sharing behavior).