8 - Improving Commercial Genetic Data-Sharing Policy

Summary

Hundreds of genetic data-sharing agreements between industry, nonprofits, and academia already exist– scientists predict that almost 60% of European-descent individuals have a blood relative in a genetic database. There is much good that can come from being able to analyze and share genetic data resources at this scale, and many recent scientific advances have been founded in both private and private/public collaborations. But there is a tension between allowing consumers autonomy to access genetic and health information directly, while contractually accepting related terms and conditions, and protecting them against a lack of clarity and transparency in the commercial genetic data research industry. Major direct-to consumer personal genetic testing companies and the Future of Privacy Forum recently released Privacy Best Practices for Consumer Genetic Testing Services. This article argues that privacy best practice standards will be a major area for improvement in the coming years. Additional improvements must be made to buttress both clarity and transparency in such policy for comprehensive governance of this vital research resource.