A new company called LunaDNA has created an avenue for people to donate their health data in exchange for shares in the company. The novel platform seeks to serve the needs of nonprofit and for-profit researchers as well as everyday people willing to share their health data.
“What we aim to do is create a human health database, inclusive of DNA data, clinical, medical, contextual information. But we do so in a manner that is owned by a community of data donors,” Dawn Barry, CEO of LunaDNA, told MobiHealthNews. “So really looking at challenges of the past when inviting individuals to share data for research, [including] transparency, privacy control, imbalance of value and [now] really face those challenges head on and building a model that addresses all of those so that we can achieve next-generation research that is continuous, longitudinal and people driven. So we don’t do research that is a snapshot in time [or a] look-back, but we ask research questions as people progress through different life stages.”
Luna has worked with the SEC to figure out a way for consumers to receive value for sharing that data with researchers, Barry said.
“When we thought about the idea of sharing in the value created, … the idea we came up with was to approach the SEC and ask them to regulate us — and obviously they agreed to do so — leveraging data as currency with which to acquire shares in LunaDNA,” Barry said. “When people acquire shares they have an ownership stake in the company. When value is created in the platform that value flows back to the individuals in the form of dividends.”
Users will get different amounts of shares depending on the data provided, according to corperate documents shared with MobiHealthNews by LunaDNA. For example, if a user donates DNA-targeted genes they will receive 10 shares worth $0.70, but if they submit their whole DNA genome they will receive 300 shares worth $21.00.
The goal is to give users more autonomy over their data — even the ability to un-share their information.
“People want control over their data. And control in our definition is the inclusion in the system and their ability to maintain at all times a string to that data, so to speak. So they are sharing their data and can un-share their data at any time,” Barry said. “When research is done the data stays in our system. We set up a data analytics sandbox with the type of data the research is interested in. The questions come to the sandbox. The data is not copied nor does it leave the system, and that is how we honor the control of the individuals.”
The platform just started accepting data last week. It currently accepts files from a majority of the major personal genomics companies and LunaDNA-generated health surveys. In the future the company plans to expand the data it will accept.
Why it matters
The company is looking to address two issues dominating the conversation in healthcare: segmented healthcare data in research, and the patient’s control over their data.
"We don’t want any silos," Barry told MobiHealthNews. "Information silos have been a hindrance to researchers in the past. We want any type of credible researchers to be able to come in.”
Barry said that the company plans to keep costs low for nonprofits hoping to access the data and plans on charging for profit companies market value.
What's the trend
While this is the first company to offer shares in exchange for health data, its not the first startup to link patients and researchers with incentives.
One of the most publicized efforts is Harvard geneticist Georg Church’s company Nebula Genomics, which plans to sequence participants’ genomes and then give users the agency to sell their personal data to researchers and pharmaceutical companies via a cryptocurrency.
Another company in the space is HealthWizz which lets users sell their health records to researchers and pharma companies in exchange for cryptocurrency.
On the record
“We are excited about this being a new way to give back, that only takes a little bit of time for people. We really believe with the participation of people we could reshape research to be more inclusive and to be more rich and longitudinal and continuous,” Barry said. “This is an opportunity not just to do a good thing but to make a statement that people driven research, and is something people are excited about, willing to participate in and are willing to share their data.”
Editorial note: This post has been edited to correct a potentially misleading quote.