LunaPBC Named One of Fast Company’s Most Innovative Companies 2020: Thank You From the President


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.

Dawn Barry, President + Cofounder at LunaPBC
Dawn Barry, President + Cofounder at LunaPBC

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.

Dawn Barry, President + Cofounder at LunaPBC

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.

At a time of increasing global volatility, this year’s list showcases the resilience and optimism of businesses across the world. These companies are applying creativity to solve challenges within their industries and far beyond,” said Fast Company senior editor Mary Farley, who oversaw the issue with Deputy Editor, David Lidsky, who added, “We like how LunaPBC democratizes genetic testing and medical research.”

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.

Luna is bringing together individuals, communities, and researchers to better understand life. 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.

Directly drive health discovery by joining the Tell Us About You study.


About LunaPBC
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.

Image Source(s): Fast Company


Dawn Barry

Dawn Barry

PRESIDENT + CO-FOUNDER

Dawn is the president and co-founder of Luna. She is the former VP of Applied Genomics at Illumina and, for 12 years, built pioneering teams from health screening to nutritional security.


Dawn Barry, President + Co-Founder at LunaPBC

Looking Ahead to 2030: Four industry watchers share their hopes for advances in precision medicine

Original article from Clinical Omics


There is typically much reflection whenever tipping from one decade into the next, as we look back at what has transpired over the past 10 years. When it comes to omics technologies and their application to precision medicine, there have certainly been significant advances.

Notable among them would be the completion of the 100,000 Genomes Project which both commenced and reached its final goal of 100,000 whole genomes sequenced within the decade and has served as the springboard for the launch of a genomic medicine program by England’s National Health Service. Today, there are more than a dozen country-wide efforts focused on collecting health and sequencing data of large and diverse swaths of each countries’ citizens—all with an eye toward using these vast data to improve how we provide healthcare for both large populations of patients and, ultimately, individuals.

But are we yet able to consistently provide precision medicine? In small niches, yes. So, while much progress has been made, it is fair to say more advances are needed before precision medicine and/or genomic medicine is standard practice. So how will we get there? Read on as four industry watchers share with you their thought on what may happen in the next ten years to advance the field.

Protection and Individual Control of Personal Health Data Will Fuel Research

Dawn Barry
President + Co-founder, LunaPBC

Discovery flows from research and research requires data. This longstanding truth will dramatically change in the decade ahead through how crucial data is acquired, aggregated, controlled, and protected. This transformation will occur as a consequence of maturation in our thinking around personal data sovereignty, and accountability and transparency in data stewardship.

A marked change in public sentiment around health data privacy is afoot. Google is under investigation by the Office of Civil Rights in the Department of Health & Human Services because they partnered with Ascension, the nation’s largest nonprofit health system, which provided health data without notifying individuals that their information was disclosed. This, despite asserting that they were compliant with HIPAA regulations that protect disclosure of personal health information. And on January 1st, the strictest data privacy law in the U.S., the California Consumer Privacy Act, took effect strengthening consumer data privacy rights in the country’s most populous state.

There is a growing lack of trust among the public in the institutions holding, buying, and using people’s data, which has fueled fears that data may be used against individuals and their families—from discrimination to “tailored” information feeds. People also now better understand the value of their personal data, and that they are not sharing in the value created from it. With DNA data in particular, people are now keenly aware that this information is shared within families, as numerous 2019 headlines detailing law enforcement applications demonstrated.

Data fuels research which in turn fuels discovery, but ultimately it is people who fuel this data—sick people, healthy people, old and young people, rich and poor people, people of all colors. They are the best curators of their health condition. If the past ten years are remembered as the decade that made genome sequencing for disease research possible, I believe the next ten years will see us execute discovery with a more holistic and inclusive lens. We will broaden our study beyond disease research to human health—with ‘health’ defined as more than just the absence of disease—and quality of life with the recognition that genetics is a mere 30% contributor to premature death. Human behavioral patterns, social circumstances, health care, and environmental exposure contribute the remaining 70%. I hope transcriptomes, microbiomes, and epigenetics will complement DNA datasets, and that person-reported, real-world, and environmental information will be included.

I’ll use the next decade to champion raising the standing of people from subjects of research to partners in discovery. In our increasingly digital world, and respecting that all personal health data—including DNA, health records, social and structural determinants of health, and clinical outcomes—starts with people, it stands to reason that if people are included, it represents a step function increase in discovery.  As partners in discovery, we must win people’s trust starting with transparency and assurances they are in control over how their data is used, who it’s stored with, and empower them with the ability to un-share all their data, at any time, if they wish.

Research has suffered for lack of data scale, scope, and depth, including insufficient ethnic and gender diversity, datasets that lack environment and lifestyle data, and snapshots-in-time versus longitudinal data. Artificial intelligence is starved for data that reflects population diversity and real-world information. I worry about the impact on research if people disengage with science and digital tools for fear of privacy violations. It’s time to feed discovery with data that reflects the diversity of the population we wish to serve. I believe people are the key to the next generation of discovery, and that protecting their privacy will empower discovery.

To read more from other industry watchers, click here.

Luna is bringing together individuals, communities, and researchers to better understand life. 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.

Directly drive health discovery by joining the Tell Us About You study. 


About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data — health records, lived experience, disease history, genomics, and more – for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.


Harris Poll Graphic

LunaDNA Study Reveals Privacy as Top Consumer Concern with DNA Test Kits


Nearly 1 in 5 Americans have used a DNA test kit, according to a 2019 study conducted by The Harris Poll on behalf of public benefit company, LunaPBC.

LunaPBC, the parent company of health data sharing platform, LunaDNA, surveyed 2,000 adults weighted to be representative of the American adult population across various demographics including age, gender, and ethnicity. The aim of the study was to understand the relationship Americans have with DNA test kits including how informed they feel about how their DNA data will be used and general concerns with participation.

The infographic below highlights the key findings:

LunaDNA Harris Poll Infographic
LunaDNA Harris Poll Infographic

In 2007, DNA test kits reached the doorsteps of its first curious consumers, offering the opportunity to reveal a wealth of ancestral and health information from just a tube of their saliva. After 10 years on the market, DNA test kits boomed amid continuous price wars from competing companies offering their version of the test for below the average price range of $99, particularly during the end-of-the-year blitz of marketing and advertising.

But while DNA test kits have become more price-accessible among American consumers in the past decade, attitudes about these tests appear to be shifting, especially across various demographics.

Key Findings of the 2019 Study

The majority of Americans either have used a DNA test kit or would consider using one in the future, while nearly 3 in 10 Americans (29%) have not used a DNA test kit and never plan to.

  • Nearly 1 in 5 Americans (19%) have used a DNA test kit, of which, men are more likely than women to have participated (22% vs. 16%).
  • Nearly a quarter (23%) haven’t used a DNA test kit but plan to do so in the future, of which younger adults between the ages 18–34 are more likely to have never used a DNA kit but plan to do so in the future (33% vs. 19%).
  • 29% aren’t sure if they will or will not participate in a DNA test kit in the future.

Among those who have used a DNA test kit, 68% say they are confident they know exactly how their DNA data from DNA testing kits are being used, outside of providing them with results (e.g. trait, ancestry, etc.).

  • Men who have used a DNA test kit are more than twice as likely as women who have used a DNA test kit to say they are very confident they know exactly how their DNA data from DNA testing kits are being used, outside of providing them with results (41% vs. 20%).
  • Younger adults ages 18–54 who have used a DNA test kit are more likely than older adults ages 55+ who have used a DNA test kit to say they are confident they know exactly how their DNA data from DNA testing kit are being used, outside of providing them with results (79% vs. 46%).

The majority of Americans have concerns about DNA testing kits. 

  • Roughly a quarter of Americans are concerned about finding out they carry a genetic disease (24%) or that their insurance company could access their results (23%).
  • More than 1 in 5 Americans are concerns about uncovering family secrets or their DNA being used by law enforcement (21%).
  • 17% of Americans are concerned that DNA testing kits would result in their DNA being used to make a clone, and 15% are concerned about finding out that what they believed to be their nationality was wrong all along.

Our Takeaways for Individuals using DNA Test Kits

Privacy First
In our increasingly digital world, it’s important that your most personal information is stored in a private and secure location. Before giving your biospecimen or health data to third-parties, first evaluate the discovery aims, rights, and privacy protocols of the organization you’re entrusting your data with. Then, be sure you are fully aware of and comfortable with the insights that can be revealed through a DNA test.

Transparency and Control Breeds Trust
It’s important for consumers to hold organizations accountable for the protection and usage of their most personal information. Laws, such as the General Data Protection Regulation (GDPR) and California’s Consumer Privacy Act (CCPA), are helping to protect consumers privacy by forcing transparency and stopping data trading and selling. It’s best practice to maintain complete control of your data – from knowing where it lives and how it’s being used to being able to delete it from a third-party database at any given time.

Data Stewardship Is Key
Ask yourself, is this organization that I’m sharing my health data with responsible, ethical, transparent, and built on a trust-centric framework? Responsible data stewardship is both an opportunity for organizations to build relationships and engage with people, and a requirement of current and prospective consumer privacy laws.


About LunaPBC and LunaDNA
Luna 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 health, personally-reported, and genomic data at a scale and diversity to solve today’s greatest health challenges. LunaPBC founded SEC-qualified 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 senior executives of Illumina, industry, academics, and financial leaders. For more information visit LunaDNA.


Ellis’ Story Hero Image

A Mother-Daughter Mission To Find a Cure


Ellis Rose Quesada is a 9-year-old girl who can captivate a room full of strangers. But her spontaneous performances and spunky dance moves aren’t the only features that make this little girl unique.

Ellis is living with Cystic Fibrosis (CF), an inherited life-threatening condition with an average life expectancy of 37 years old. Today, Ellis and her mother are taking proactive measures to change the narrative of the disease and actively participate in research to accelerate a cure.

When Ellis was born, her mother Kristina had no idea her daughter would be sick. It wasn’t until her doctor discovered that Ellis was among the few to be born with CF that she realized life wouldn’t be ordinary.

In addition to living with excruciating daily symptoms including nasal congestion, sinus problems, wheezing, and breathing issues, Ellis was required to take enzyme pills after every time she ate food, including small snacks. Despite the uncertainty of the future, Ellis and her family remained optimistic.

She knows how to use that confidence and that power in who she is to elevate others around her. I think a lot of that comes from being very upfront early on about her illness and what it is that she’s dealing with.”

When Ellis was three years old, she was accepted into a CF clinical trial. “It takes so long to get these drugs to market. It feels like you’re moving in slow motion,” says Kristina. But over time, they began to see the benefits of participating in the study.

As Ellis continued to take the drug, she began showing signs of progress. She slowly started to gain healthy weight and her energy levels went up. Tests revealed that her pancreatic sufficiency went from insufficient to sufficient.

Today, Ellis no longer has to take enzymes with her food and is excited be able to enjoy the fun foods children love, like ice cream and candy bars. It’s progress like this that’s ignited a passion and drive in Ellis to help further find more treatments for herself and others living with CF.

Kristina is hopeful that critical new drugs will come to market sooner and believes LunaDNA has the power to accelerate discovery when patients and the research community work more closely together.

“Most of us think that we can walk into a drug store and get exactly what we need.” says Sharon Terry, health advocate and President and CEO of Genetic Alliance.

“It’s really hard to bring a treatment to market. LunaDNA is doing a very simple thing: it’s offering me a place to put my data and, at the same time, allows scientists to aggregate the data they need for discovery. So I retain the control of it and I’m freely participating in research but not worrying about being identified or that I’ll lose my privacy. Bringing all these data together in one place, we start to be able to make discoveries very fast.”

Kristina knew that early intervention would accelerate a treatment for Ellis and open up new possibilities for science to find a cure. “Her case is the first of its kind where they are seeing symptoms being reversed. There’s still new drugs coming to market today that we’re going to want her to have access to. If there’s going to be a better way with something like LunaDNA then I think that’s going to be huge for all patients to accelerate getting the drugs that they need in their hands.”

Luna is bringing together individuals, communities, and researchers to better understand life. 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.

Directly drive health discovery by joining the Tell Us About You study. 


About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data — health records, lived experience, disease history, genomics, and more – for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.


Kirby Bloom, Chief Technology Officer

LunaPBC Announces Kirby Bloom as CTO


LunaPBC has proudly promoted their chief architect to spearhead the technical and data science initiatives at the world’s first people-powered research platform, LunaDNA — incoming chief technology officer Kirby Bloom.

Kirby has been an integral part of the strategy, design, and development of LunaDNA’s platform, having worked at the parent public benefit company, LunaPBC, since April 2018. With over 20 years of experience developing scalable, distributed cloud architectures, Kirby is bridging the gap between research scientists and large-scale data analytics by building the systems needed to discover more insights for health and quality of life improvement.

Kirby served as the Head of Software for Applied Genomics at international biotechnology company, Illumina, Inc. After 11 years creating software architecture for Illumina’s DNA testing platforms serving the forensics, transplant diagnostics, microbiology, and consumer markets, Kirby joined former Illumina executives Dawn Barry, Bob Kain, and Scott Kahn, to create LunaDNA, the world’s first participant-owned, SEC-qualified health data sharing platform for accelerating medical breakthroughs.

As CTO, Kirby leads the technology vision and implementation for LunaDNA by driving strategy, designing innovative product roadmaps, and overseeing technology and engineering team execution.

My entire career has been devoted to making ‘the complex’ simple in order to improve lives,” says Kirby Bloom. “I feel honored and just flat-out lucky to have the opportunity to be a part of a purpose-driven team that is building a platform that truly enables personal control on one end and insights to drive health research on the other.”

LunaDNA’s technical team includes former employees of Netflix, Kaiser Permanente, and Human Longevity, Inc. with skills that range from software engineering to machine learning to platform strategy and human-centered design.

Kirby has so many strengths but one that always stands out to me is his perspective.  He sees the bigger picture, naturally adjusts for all that is dynamic, and doesn’t get lost in the details”, said Dawn Barry, President and Co-founder of LunaPBC.  “For example, while many companies are scrambling to increase their consumer data privacy protections, Kirby architected LunaDNA with privacy by design because it’s what discovery needs and because protecting people is the just right thing to do. Kirby has tremendous respect from everyone on his team and knows how each individual works to contribute to the overall platform goals. By keeping the end objective in sight, Kirby leads to the vision, not just the short-term goals”.

Kirby Bloom holds a Master of Information and Data Science from the University of California, Berkeley, one of the nation’s top multidisciplinary programs that prepares professionals with the latest tools and analytical methods to work with data at scale, derive insights from complex and unstructured data, and solve real-world problems. Kirby also holds a Bachelor of Business Administration degree in Management Information Systems from Texas Tech University. When Kirby’s not leading LunaDNA’s technology team, you can find Kirby beneath his headphones at a local coffee shop or traveling the world with his fiancée. Connect with Kirby online at @krbloom22 and kbloom@lunadna.com.


About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data — health records, lived experience, disease history, genomics, and more – for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.