Source: Genetic Alliance
Source: Genetic Alliance

LunaDBX, the parent of LunaDNA, and the Genetics Alliance announced this week that the organizations will merge their respective databases over the course of 2019 to create a single platform for the secure sharing of patient data with the intent to improve both the treatment of patients within specific disease-related communities while also empowering research for new treatments.

The combination of LunaDNA’s data with Genetic Alliance’s Platform for Engaging Everyone Responsibly (PEER) data is a joining of the organizations that share fundamental principals in the appropriate use and ownership of patient data and data sharing for advancing precision medicine. In a nutshell, both take and advocate an individual’s right to control and own their health and genetic data.

“From an individual or sponsor organization’s journey, it is about how are we thinking about IRB approval and the ethics that come into bringing a community together both for improving the care of the individual in the community as well as accelerating research opportunities to impact the next patients,” said Dawn Barry, president and founder of LunaDNA in a recent interview with Clinical OMICs.

Genetic Alliance's PEER platform currently includes 45 disease communities representing more than 50,000 individual participants. The organization counts more than 1,200 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations among members of its alliance.

LunaDNA, operates under a new and unique model compensates individuals for their genomic and other data with shares of company stock. The precedent-setting structure was agreed to by the U.S. Securities and Exchange Commission (SEC) in December and values a whole-genome at 300 shares (roughly equivalent to $21). Under the agreement with LunaDNA, patients with data in the PEER platform will be able to earn shares of LunaDBC depending on the amount of data they share within the merged platform. Individuals in PEER can choose to either keep the dividends earned by their data for themselves, or donate them to the charity of their choice, Barry said, again putting the patient first in reaping the rewards of the data they are willing to share.

“Most research endeavors leave out the most critical stakeholder: people. While health data is a critical component to the advancement of new treatments, research, and medical technology, data alone will not lead to solutions that alleviate suffering,” said Sharon Terry, president and CEO, Genetic Alliance. “The biomedical research enterprise tries to cut corners and sever people's connection to their data, or keep it opaque how individual health data is used and who gains access to the data individuals provide. We are excited to partner with LunaPBC because, like us, they believe individuals need and deserve opportunities to be active participants in their own health and research opportunities.”

The merging of the datasets will both help LunaDNA continue to build a critical mass of patient date, while also freeing Genetic Alliance to continues its work as one as a leading advocate of patients' right to protecting the privacy and maintaining ownership of their genetic data.

“Luna knows data aggregation, organization, structuring and research readiness,” said Barry. “So now that data is going to be managed and ready for research as soon as it is [in the merged platform]. Finally, we make sure across the whole spectrum of the continuum that individuals have the choice that they have always come to have—the ability to control their inclusion in the system, their ability to establish a proxy setting, and to remove or keep certain types of data.”

As Terry sees it, this will help usher the new era of how patient data is used and handled.

“The day of de-identified data is over—we need to understand what happens over time, we need people to be partners in their own research-to-care cycle. Together, we're providing a people-centric model that empowers the individual to offer access to their health data and also receive support. We are building secure and transparent communities and connections geared towards supporting the individual that will accelerate medical breakthroughs,” Terry concluded.

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