I’m proud to share that we’ve been named to Fast Company’s annual list of the Most Innovative Companies in 2020 in the Social Good category.
This community is being recognized for its groundbreaking efforts in reimagining discovery by putting people at the center of health discovery. This news comes just months after being named a World Economic Forum Technology Pioneer. On behalf of the Luna team, our partners, and the people who have joined the platform, thank you for all that we have achieved together in such a short time.
I deeply appreciate many things about the LunaPBC team. Foremost is our team’s ability to naturally and consistently make decisions from the lens of what’s best for people individually. Social good is about mobilizing individuals towards a better society, often through the use of innovative technology. Innovation, by its very nature, is new. Its full power and impact are inherently unknown. Entrepreneurs and inventors take on a moral imperative to do best to ensure no harm is done when deploying innovation, especially in the pursuit of inclusively improving health outcomes.
In my 2016 TedX talk, I proposed to involve people and communities in research to improve biomedical discovery. I would later come to express this as ‘promoting people from subjects of research to partners in discovery’. Over the last few years, the opportunity has only become greater through the digitization of life activities, while the need to improve research has never been more crucial.
Scientists have typically been restricted to studying episodic and incomplete human data. With the legal right to our electronic health records from healthcare providers, our ability to access our DNA information without going to a doctor’s office, and the power to track our activity and lifestyle choices through wearables and apps, we are now generating a full spectrum of life data in the digital world. Biomedical researchers have yearned to study a more ‘complete picture’ of disease and health – the equivalent of studying both nature and nurture. Genetics contribute merely 30% to premature death while human behavioral patterns, social circumstances, health care, and environmental exposure account for 70%.
In this increasingly digital world, and respecting that personal health data starts with the individual, it stands to reason that if people are included an increase in discovery could be achieved. Simply put: You are the best curator of your health profile, you have access to all your data, and you should control the use of this most personal information.
But here’s what we’re up against: we have all become unknowing research subjects. There is a growing lack of trust in the institutions that store, buy, and analyze our data, and this has fueled fears that our data may be exploited — from privacy violations and discrimination to “tailored” marketing and advertising feeds. For example, Google is under investigation by the Office of Civil Rights in the U.S. Department of Health & Human Services because of its partnership with Ascension, the nation’s largest nonprofit health system. This relationship gave health data to Google without notifying individuals that their information was disclosed. Independent of the assertion that Google and Ascension were compliant with HIPAA regulations that protect disclosure of personal health information, we should scrutinize this disclosure more carefully. We increasingly understand the value of our health data. We know that we are not sharing in the value created from it and worse, that we could suffer harm if it gets in the wrong hands. Especially with DNA files, people are now keenly aware that this information is shared within families, as numerous headlines detailing law enforcement applications have demonstrated.
Today, people and technology, together, have tremendous power for social good. Yet, I’m concerned about the impact on health research if people disengage with science and the many useful digital tools available for fear of privacy violations.
Here’s the opportunity: Companies like Airbnb, Lyft, and DoorDash flipped the script by putting the power in the hands of individuals to control supply and demand. If even a fraction of people accessed their electronic health record or their DNA file and shared it in LunaDNA, it would create a discovery resource the likes of which the world has never known. As a community, we would flip the script on the buying and selling of our personal health data. Moreover, we could put the information to work for good – to enable researchers to understand disease and health better so the world can avoid, detect, and treat disease sooner. The discovery enterprises would be fed with data that reflects the true human condition and the diversity of the population that must be served with better health interventions. We don’t need to rely on the reach and resources of governments, multinationals, and large corporations to activate this change.
LunaDNA is a person-first model with privacy by design to address previous industry research challenges such as data silos limitation, data usage non-transparency, and value imbalance. We are supportive advocates of the new privacy rules like GDPR and CCPA. LunaDNA has created a global community for data sharing where community is the core tenet. Members control their inclusion in the database by always having the option to remove consent and delete their data from the platform. We are the first company to receive approval from the U.S. Securities and Exchange Commission (SEC) to recognize health data as currency by which to acquire ownership shares in a company. This represents another layer of transparency and protection for the individual sharing data. It’s also an expression of fairness: the monetary value of LunaDNA share ownership will be expressed through dividends consistent with an individual’s ownership percentage. Holders of shares can increase their holdings over time by contributing more data, and intrinsic value in the database is created as research advances and medical discoveries are accelerated.
This year, Fast Company’s editors and writers sought out groundbreaking businesses across 35 industries in every region. Fast Company’s Most Innovative Companies March/April 2020 issue is now available online here, as well as in app form via iTunes and on newsstands beginning March 17, 2020. Engage in the conversation by using the hashtag #FCMostInnovative.
Become a driving force in one of history’s biggest health movements by taking control of your data, taking control of your privacy, taking control of your health, and powering discovery. Join LunaDNA today.
Public Benefit Corporation, LunaPBC, is a private investor-owned company founded in November 2017. It is chartered to drive societal value through the aggregation and organization of genomic and health data at a scale and diversity rich enough to solve today’s greatest health challenges. LunaPBC founded LunaDNA, the first people-powered, community-owned data sharing platform. The LunaPBC team, investors, and advisors are renowned in the patient-advocacy, health, and science fields, including several former chief executives of Illumina, industry academics, and financial executives.
For more information visit lunadna.com.
About Fast Company
Fast Company is the only media brand fully dedicated to the vital intersection of business, innovation, and design, engaging the most influential leaders, companies and thinkers on the future of business. Since 2011, Fast Company has received some of the most prestigious editorial and design accolades, including the American Society of Magazine Editors (ASME) National Magazine Award for “Magazine Of The Year,” Adweek’s Hot List for “Hottest Business Publication,” and six gold medals and 10 silver medals from the Society of Publication Designers. The editor-in-chief is Stephanie Mehta and the publisher is Amanda Smith. Headquartered in New York City, Fast Company is published by Mansueto Ventures LLC, along with our sister publication Inc., and can be found online at fastcompany.com.
For more information visit fastcompany.com.
Luna is bringing together individuals, communities, and researchers to better understand life. Directly drive health discovery by joining the Tell Us About You study. The more we come together to contribute health data for the greater good, the quicker and more efficient research will scale, and improve the quality of life for us all.
Image Source(s): Fast Company