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
genomicsandhealth.org.

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.

Opinion piece from George Church (Personal Genome Project, Harvard) on "Improving genome understanding".

From NATURE:

Improving genome understanding

The cost and accuracy of genome sequencing have improved dramatically. George Church asks why so few people are opting to inspect their genome.

09 October 2013 Corrected: 09 October 2013

Readers of Nature, we can assume, are bright and insatiably curious. So why have so few obtained and interpreted their own genome sequence? We should avoid being judgemental of people who practise genomic modesty or who choose not to act on genome information, but we should also ask if we are providing adequate and equal access to education about the benefits and risks of genome information.

Continued: http://www.nature.com/news/improving-genome-understanding-1.13907