Tuesday, July 01, 2014

Personal Genome Project: Comments on GA4GH Data Sharing Draft

Comments on GA4GH Data Sharing Draft

JUNE 30, 2014

by Madeleine Price Ball

The following is a copy of our comments as submitted through the online interface at

These comments pertain to the International Code of Conduct for Genomic and Health-Related Data Sharing – DRAFT # 6, produced by the Regulatory and Ethics Working Group of the Global Alliance for Genomics and Health. That draft document can be found at this URL: http://genomicsandhealth.org/our-work/work-products/international-code-conduct-genomic-and-health-related-data-sharing-draft-6

Our most important points are the first two. The first suggests an explicit mandate to inform individuals, families, and communities regarding identifiability of their data. The second suggests individuals, families, and communities from whom data is derived also be considered as potential data sharing recipients.