Privacy & Ownership of an Individual’s Personal Genetic Information

What ELSI is new (article)This commentary in the Genomics Law Report’s ongoing series What ELSI is New? is contributed by Jennifer Sweeney, Knome, Inc.

As personal genetic information becomes increasingly accessible and affordable, the ownership and privacy of such data will emerge as a central issue in genomics. Is personal genetic information, stored within a centralized database where a third-party gatekeeper determines who has access, really still private? Who owns such data? Should the individual have control over how, when and where their information is used? In such cases, it certainly seems the individual may have forfeited ownership and rights to control access to their own data.

Many of today’s genomics companies are compiling vast databases of genetic data, phenotype information and medical histories obtained from their clients. Two important characteristics of genetic information make issues of privacy and ownership especially important – the durability of such data and its relevance to family members. An individual’s genetic information does not change over time, so once it is disclosed there is no reclaiming it. Further, we share substantial portions of our genetics with family members – choosing to grant access to our own data impacts present and future family members without their consent.

As yet, industry and regulators have placed little focus on ownership and privacy concerns. GINA addresses discrimination once an employer or insurer already has access but is silent on who actually owns the genetic information. For the most part HIPAA’s privacy protections do not apply because DTC genomics companies are not “covered entities” under the privacy rule. Corporations, namely DTC genomics companies, have become the default guardian of personal genetic information.

Surely we all benefit from individuals electing to share their genetic information with others – it is the basis for how future genetic discoveries will be made. However, granting unfettered access or forfeiting ownership of inherently private, personal genetic information exposes an individual in ways not yet fully understood. Careful consideration should be given to the best ways to ensure genetic information remains private, owned and controlled by the individual.