In today’s world of big data, marketing, and “big brother”, everyone wants a snippet of your data. Retail establishments want to know how you shop, streaming services want to know what you watch. But it doesn’t get much more personal than your genome – the blueprint of you. Could you ever trust a company with this ultimate form of personal data?
LunaDNA is a new platform that hopes to earn that trust. Users can upload their genome – in return for stock interests in the company. Eventually, other forms of data, such as biometric data and health information, may be uploaded as well. This information is then used by medical professionals, scientists and pharmaceutical companies to advance research.
So why trust a company with your genomic data? President and CoFounder of LunaPBC (the company that created the platform for LunaDNA) Dawn Barry explains that their company wants to do privacy differently. You don’t sell your data to LunaDNA – you share it. “When you sell something you give up ownership of it, you trade it away for something,” she says. “Ultimately the ownership transfers and your data can be copied, resold, etc. And I think we have to be very careful about those models especially in the way of DNA where it’s not just yours, it’s your family’s information. This model is about sharing data, meaning you are not relinquishing ownership… and I think that’s an important distinction of not losing control of your information.”
Basically, a user of LunaDNA would upload their genetic information, say, from a company like 23andMe or Ancestry. Then, if they opt-in, they would hear about various studies that could use their data. They could opt-in to each study individually. Researchers would then use their data, which they could only see in an aggregate, de-identified format. Users could then have the option to receive a followup survey or a request for more information to further advance the research. When it’s all done, users would be able to see that their genetic information moved research forward. In addition to stock ownership, users in LunaDNA often have some sort of altruistic goal – they want to see health research advance, and they want to be a part of it.
Eventually, Dawn Barry envisions that tools to interpret your genetic data, as well as access to a network of providers, like genetic counselors, may be available to users.
But privacy is paramount, and when a company is dealing with something as delicate as your genetic information, they have to earn a lot of trust. Researchers must only work with the data on the LunaDNA platform, and the data is never fine enough to resolve an individual person. Data is stripped of all identifiers, and no one can match the data with the individual. Information that does connect the individual is stored on separate, encrypted databases. Because data does not leave the platform, it cuts down on opportunities for data to be intercepted.
Perhaps this model of data sharing, rather than data selling, is a model that other companies can use too. Dawn Barry explains that people like to be in control of their data. They can choose how it is used, and can opt-out at any time. “We offer a solution to an unmet need in health data aggregation, organization, structuring, and proper permissions management,” she says. Other companies, especially those that use sensitive health information, may eventually adopt this “data stewardship model”.