COVID-19 Study Infographic Snippet

LunaDNA Reveals Early Insights from the COVID-19 Study

In March 2020, LunaDNA, in partnership with Genetic Alliance, opened a COVID-19 study to gather physical and mental wellness information directly from individuals during the global pandemic.

As of today, individuals from across the country and beyond have submitted over 187,000 survey responses revealing some remarkable early insights that have been presented to noteworthy science organizations. The study is still open and all are welcome and encouraged to share their experience to build a representative body of knowledge.

Early data shows that, of all survey respondents, one in six has taken a COVID-19 test and nearly one-third tested positive. Additionally, those 45 years of age and older were 4.3x more likely to test positive for the virus than those younger than 45, and those 65 years of age and older were 3.5x more likely to test positive than those between the ages of 24 to 44. 

Other preliminary insights from the survey data reveal testing expectations and anxiety level for respondent’s who have been diagnosed with COVID-19. The infographic below highlights the key findings.

COVID-19 Study Infographic Snippet
Click Image to View More Insights

Different than many institutional studies, the LunaDNA COVID-19 Study gives people and communities the tools to capture their lived experience during this unique time, recognizing that each person, community, and geography is impacted differently and will likely experience different long-term effects.

Sharon Terry, COVID-19 Study partner and CEO and President of Genetic Alliance, presented these early insights to the National Academy of  Medicine’s (NAM) Standing Committee on Emerging Infectious Diseases and 21st Century Health Threats.

This study is conducted by the people, for the people, and in collaboration with various communities. This inclusive approach has garnered broad appreciation both for its ability to incorporate real-world experiences but also because it’s empowering people to have a voice in what will not be a one-size-fits-all solution to COVID-19. We are responding to NAM’s recommendation to expand to at-risk individuals such as those in nursing homes and detention centers. When unique voices and experiences are represented, researchers can deliver more precise answers.”

COVID and Communities 

LunaPBC, the public benefit corporation behind the LunaDNA platform, is collaborating with various community groups to support privacy-protected COVID-19 study including Genetic Alliance and Disease InfoSearch, xCures, San Diego Blood Bank, and the Propionic Acidemia Foundation. Each community’s study has a unique focus, ranging from how the virus affects cancer, genetic disorders and co-morbidities, to general data-sharing for research studies and clinical trials.

We encourage community leaders to create their own COVID-19 study program and leverage the LunaDNA infrastructure to better understand the impact of the coronavirus in their communities. Please contact us at to explore your needs and goals.

Answers Wanted 

The COVID-19 Study is an IRB-approved study. If you are a researcher interested in qualifying and/or quantifying the short- and long-term physical and mental impact of the coronavirus pandemic and/or COVID-19 disease, we want to meet you. The LunaDNA platform exists to bridge individuals, communities, and researchers for privacy-protected, socially responsible discovery that improves health and quality of life in local communities and beyond. The need to invite individuals into research from the safety of their home, and to incorporate their lived experience into discovery, has never been clearer. Please contact us at

Your Voice Matters 

We invite all people over the age of 18 to join the COVID-19 Study by taking the physical and mental wellness questionnaires on LunaDNA. Together, we can surface insights to improve our current state and better prepare for future pandemics. The LunaDNA platform preserves your personal privacy, is simple to join, and is free of charge — it costs only 5 minutes of your time to contribute to valuable research. Click here to get started.

Bob Kain Head Shot Dark Bkgnd

Creativity Seeds Innovation: An Entrepreneur’s Journey Towards Redefining Health

LunaPBC’s CEO Bob Kain is named to Fast Company’s annual list of the Most Creative People in Business for 2020.

By Bob Kain, LunaPBC CEO and Co-founder

Innovation has always been proudly hailed as a core value in business, and rightfully so. Every business leader will admit this powerful tool supports developing valuable technologies, designing disruptive products, and vastly improving the way products or services are delivered to optimize business models. But what seeds innovation? How might business leaders develop this skill to make true, impactful change? It starts with creativity.

When applied appropriately, creativity is the secret sauce for improving organizational efficiency, decreasing costs, reducing risks, improving morale, and of course, seeding innovation. It is a crucial organization asset all too often left untapped. Fortunately, we all have the capacity to be creative in solving problems and carrying out work responsibilities. 

Developing a creative organization often starts with 1) clearly communicating the organizational challenges staff should consider, steering the creativity process squarely in the direction of value creation, and 2) teaching the fundamentals of the creativity process.

Organizations must encourage and nurture creative thinking and the sharing of ideas between employees. Innovation can arise when the right creative ideas are then implemented to solve important challenges and move the company forward to meet its goals. It is critical to continuously engage team members on the organization’s mission, goals, and main tactical challenges, while empowering them to think about, share, and discuss ideas.

Identifying the key problems to be solved, root causes of the problems and the strengths and weaknesses of existing options often enables us to surface valuable, new, creative solutions.”

Initial ideas may sometimes be silly, impractical, or seem to result in new problems, however, the journey to the right solution follows a path of thoughtful analysis of many wrong solutions. This deep understanding of the problem, the landscape around the problem, and the intricate details of the flaws in proposed solutions lead us to new creative solutions.

Bob Kain Head Shot Open Interior
Bob Kain, CEO + Co-founder at LunaPBC

Implementing Creativity to Impact Genomic Sequencing

Reflecting back on my 15-year career at Illumina, architecting the HiSeq is a great example of creativity utilizing technology tools to design a disruptive new product. Illumina, the biotech giant, was in a heated competition fighting to stay a half step ahead in the marketplace by introducing incremental product improvements to its Genome Analyzer DNA sequencing machine. Simultaneously, some of us focused our thinking on a bet-the-company strategy to reduce sequencing costs by at least a factor of ten. To accomplish this, we first had to understand and model the transformation that occurs in order to convert biological information — the A, C, T, and G’s in our genome – to digital information that could be stored on a computer.  Based on this understanding and knowledge of available technology building blocks, the HiSeq instrument was architected using technologies that followed Moore’s Law improvement curves. We chose technologies that would both provide an order of magnitude improvement over competitive offerings at launch, and provide a decade-long product roadmap that would improve on performance by two orders of magnitude. The resulting HiSeq product line not only broke the $1,000 genome barrier, but it was also capable of bringing the cost per genome down to $100 in the future.

Illumina HiSeq 2000
Illumina HiSeq 2000

Reinventing Industry Business Models

Similarly, LunaDNA’s solution to catalyzing health research is an example of creatively reinventing the industry business model to enable unfettered access to health data and accelerate the pace of discovery. This mission-driven journey began years before co-founding the organization when many of its executives from Illumina began investigating impediments to understanding how the human genome impacts health.  

We uncovered multiple factors slowing the pace of discoveries, including structural impediments. Institutions refused to share data, viewing this information as proprietary assets on their balance sheet. Attempts to establish federated data systems linking data from national genome centers, academic medical institutions, and for-profit organizations failed. Even when federated models included organizational permissioning and price setting for data access, there was little interest in data sharing. The personal data of individuals was being scooped up and locked away as organizational bounty.

We also identified social impediments to data sharing. In 2013, I sponsored a scientific meeting at the Banbury Center at Cold Spring Harbor titled Accelerating Genomic Research With Privacy Protections to determine the extent to which we, as a society, can protect genomic information and utilize it for the greater good. Many experts in the field were invited. Attendees reviewed technical options to protect privacy and security, and explored the challenges faced by academic researchers, hospital systems, and direct-to-consumer genetics companies in engaging study participants and soliciting consent for data sharing. 

It was at this Banbury meeting where we learned that an increasing participant engagement could not be solved solely by technology alone. Lack of engagement could be attributed to the individual’s lack of trust in the data stewardship. The group authored a White Paper published in PLOS Biology, entitled Redefining Genomic Privacy: Trust and Empowerment. The paper concluded that trust and empowerment were the keys to gaining consent and engagement from study participants, and this gaining of trust could be accomplished through transparency, control, and reciprocity around the use of their data. Needless to say, the lack of creativity the future of health discovery was facing was apparent to many experts in the field. 

As the meeting progressed, we shifted our focus from discovering links between our genome and our health to more generally improving health and quality of life. We became aware of additional impediments caused by “missing data” in studies; data that only exists in the heads of individuals. Examples of this missing data include patient-reported outcomes, patient adherence to physician recommendations, and behavioral information such as diet and exercise. This missing data could only be accessed by forming a trusted relationship with individuals, establishing long-term engagement, and educating people on the value to themselves and the communities of their participation in health research.

Creatively Changing Societal and Regulatory Issues of Data Ownership

Another important factor in health discovery much acknowledge is the changing legal and regulatory issues related to personal data privacy. The increasing awareness of how personal data is being used and abused is causing a societal backlash. Legislation is quickly putting a stop to many of these abuses, such as the General Data Protection Regulations (GDPR) in Europe and the California Consumer Privacy Act (CCPA). Corporate brands are getting tarnished when privacy violations are publicized. These factors have to be taken into account when creatively designing a data and discovery ecosystem.

The LunaDNA business model and the HiSeq architecture did not arise simply by putting all this information into a bucket and magically coming up with a solution. The solutions arose because this information was understood by the founders. In the case of LunaDNA, the information formed the basis of many creative discussions around what a successful and disruptive solution to enabling unfettered access to health data might look like. In the end, one concept rose to the top: return ownership of the data back to the individual. The problem could not be solved with an institutional data ownership model. It was time to do what is right for people and respect a person’s right to data privacy, control, transparency, and attribution. We directly invite every person to join the journey, to collectively catalyze health discoveries. 

So in 2017, we formed LunaPBC, a Public Benefit Corporation, and then founded LunaDNA. 

Different than the institutional data silo model, LunaDNA forms a data-sharing relationship directly with individuals and communities, is interoperable across communities, delivers value to participants, and operates under the U.S. Securities & Exchange Commission oversight (covered in Nature Biotech) and in compliance with modern international consumer privacy laws.

Both in the example of the HiSeq $1000 genome sequencer and creation of community-owned LunaDNA, creativity arose as a result of a deep and comprehensive understanding of the respective ecosystems and free-flowing analysis and conversations focused on new approaches to success in each ecosystem.”

These approaches aligned with the mission, purpose, and strategic aims of the people and organizations involved. 

I would like to thank all of my colleagues at Illumina and at LunaPBC for joining me on these journeys, and Fast Company for honoring me with Most Creative People in Business Award for 2020. It’s been a fun ride.

Bob Kain

LunaPBC’s CEO Bob Kain Named to Fast Company’s Annual List of Most Creative People in Business for 2020

We’re proud to announce that our Chief Executive Officer, Bob Kain, has been named to Fast Company’s annual list of the Most Creative People in Business for 2020.

This news comes just months after LunaPBC was named to Fast Company’s annual list of the Most Innovative Companies for 2020 in the Social Good category. Bob is recognized for his incredible achievements and significant impact in health tech, architecting Illumina’s HiSeq sequencing program, starting in 2008, and co-founding LunaDNA in 2017, the world’s first member-owned data-sharing platform for health research.

This year’s winning group features individuals working in artificial intelligence, winemaking, cybersecurity, television, underwater museum design, and more. It includes leaders from Patagonia, Amazon, Kaiser Permanente, Citi, and Google; and it spans across the globe, from China to Peru to Jordan to Burlington, Vermont.

“The Most Creative People in Business list offers a highly vetted, fully reported view of the powerful ideas and diverse leaders already shaping tomorrow,” said Jill Bernstein, Editorial Director at Fast Company.

Bob Kain
Bob Kain, CEO and Co-founder at LunaPBC

Bob Kain and His Creative Endeavors in Health Tech

Biotech executive, inventor, and entrepreneur, Bob is a renowned pioneer in genomics, dedicating most of his career building Illumina, Inc. pre-IPO from 30 employees with no revenue, to a burgeoning workforce of over 3,000 employees and $1.4B in revenue. In 2017, Bob came out of retirement following his 15-year career as the chief engineering officer at Illumina to co-found LunaPBC, the public benefit corporation behind LunaDNA. In between his career at Illumina and LunaPBC, Bob founded health and fitness business, Mesa Rim Climbing and Fitness Center, with multiple sites in San Diego, California, and Reno, Nevada.

“Innovation has always been hailed as a core value in business, and rightfully so. Every business leader will admit this powerful tool supports developing valuable technologies, designing disruptive products, and vastly improving the way products or services are delivered. But what seeds innovation? How might business leaders develop this skill to deliver truly impactful change? It starts with creativity,” Bob shares in his article, Creativity Seeds Innovation.

When applied appropriately, creativity is the secret sauce to improving organizational efficiency, decreasing costs, reducing risks, improving morale, and of course, seeding innovation. It is a crucial asset to an organization often left untapped. Fortunately, we all have the capacity to be creative in solving problems and carrying out work responsibilities.”

LunaDNA’s COVID-19 Study Program

As technology advances, so do creative health innovations, including the recent spike in biotechnology companies aiming to support biomedical research studies at scale. Amid the coronavirus pandemic, Bob believes there’s no better time to seed innovation than now. In March 2020, Bob helped launch LunaDNA’s COVID-19 Study, a program that offers people and communities the tools to share their lived experiences during this unique time, recognizing that each person, community, and geography is uniquely impacted and will likely experience different longterm health effects. LunaPBC is collaborating with various groups to support privacy-protected COVID-19 information sharing including Genetic Alliance and Disease InfoSearch, xCures, San Diego Blood Bank, and the Propionic Acidemia Foundation. Each study has a special focus, ranging from how the virus affects people with cancer, genetic disorders and co-morbidities, to capturing individual’s interest to join research studies.

Co-founders from Left to Right: CFO David Lewis, CEO Bob Kain, President Dawn Barry

LunaPBC focuses on supporting research to identify links between our biology and health, as well as surface other factors related to wellness, such as environmental and social influences. LunaDNA elevates people to partners in research with data privacy, control, and transparency, recognizing that the future of discovery requires big relationships over big data. Bob hopes that LunaDNA will bring data together at scale to fill the missing gaps in today’s databases.

We praise Bob for this incredible recognition and look forward to the additional creative innovations he’ll bring to health tech.

“I would like to thank all of my colleagues at Illumina and at LunaPBC for joining me on these journeys, and Fast Company for honoring me with 2020’s Most Creative People in Business Award. It’s been a fun ride.”

About LunaDNA and LunaPBC
LunaDNA makes discovery representative of the real world and aligned with people’s true goals by giving all individuals a role in research from right where they are. LunaDNA is a digital data-sharing community owned by its members. By sharing health information, you directly power disease research. As a member, your data is confidential. You control the information you share — only one copy of your data exists and you always control its inclusion in LunaDNA. We make it simple for all credible researchers to pursue health and quality of life discovery. LunaDNA is managed by Public Benefit Corporation, LunaPBC, founded in 2017 and headquartered in San Diego, California. 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.

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 Companyis published by Mansueto Ventures LLC, along with our sister publication Inc., and can be found online at

For more information visit

Freeway overpasses from above

LunaPBC Joins MetroConnect to Accelerate International Growth

On Friday, June 19, 2020, World Trade Center (WTC) San Diego, with San Diego Mayor Kevin Faulconer, Procopio, and JPMorgan Chase & Co., unveiled LunaPBC as one of the 15 companies selected to participate in  MetroConnect V, the fifth iteration of WTC San Diego’s comprehensive international sales accelerator program designed to help local companies jump-start and scale their global growth.

“The LunaDNA platform solves for geographic and inclusiveness barriers that have long plagued cross-border and fully representative data flows by working directly with people, versus institutions, to receive share their health their data for research,” said Dawn Barry, LunaPBC’s president and co-founder. “Disease knows no borders, and our platform doesn’t either. By enabling virtual, dynamic research communities that are controlled by the individuals that share their data, we make it easier for patients and their families to join studies right where they are and share valuable insights from their lived experiences. We’re delighted to access MetroConnect’s resources and experience to amplify Luna’s health equity objectives internationally plans.”

Now in its fifth year, MetroConnect continues to cultivate a pipeline of export-ready firms in San Diego by equipping small and medium-sized enterprises (SMEs) with the necessary resources to grow their international sales. Program participants receive a $5,000 grant, a one-year subscription to premium translation software (courtesy of program sponsor SYSTRAN), discounts on international travel, executive workshops on export-related topics, and access to a global mentor and service provider network. In the program’s four-year history, the 65 graduate companies collectively generated a net increase of $85 million in international sales. These companies also hired 269 San Diego employees during their tenure in the program.

“We applaud LunaPBC for taking the next step in going global,” said Nikia Clarke, executive director of World Trade Center San Diego. “Amidst a global shutdown caused by COVID-19, ongoing trade negotiations with key trading partners, and rapid changes to global supply chains, it is more important now than ever to give local SMEs an edge in the global marketplace by equipping them with valuable resources.”

The MetroConnect program is highly competitive, with just 15 San Diego companies selected based on a variety of criteria, including interest in new markets, interest in targeted metro markets, assessed impact of funds, current international traction, and more. Applicants were assessed by a panel of judges, including representatives from Qualcomm Ventures, Connect, Biocom, the U.S. Commercial Service, CMTC, Viasat, Mitsubishi Electric, Procopio, San Diego State University, Tech San Diego, UC San Diego, San Diego Regional EDC, WTC San Diego, and last year’s grand prize champion, Eddy Pump Corporation. LunaPBC joins a cohort of 14 other companies representing a unique cross-section of San Diego’s industries, from genomics to manufacturing to craft brewing – each with plans to take San Diego innovation global.

The companies in this cohort will also have the opportunity to participate in the program’s final competition, the MetroConnect Grand Prize PitchFest, which will grant an additional $25,000 to help one company further advance its international efforts. MetroConnect is co-underwritten by JPMorgan Chase & Co. and Procopio, with additional support provided by American Airlines, British Airways, City of San Diego, Japan Airlines, Japan External Trade Organization, Mitsubishi Electric, Qualcomm, RSM, San Diego and Imperial SBDC Network, SYSTRAN, Takeda Pharmaceuticals, Taylor Guitars, United Kingdom Government Office, YCP Solidance and more.

About World Trade Center San Diego
World Trade Center San Diego operates as an affiliate of San Diego Regional Economic Development Corporation. WTC San Diego works to further San Diego’s global competitiveness by cultivating a pipeline of export-ready firms, attracting and retaining foreign investment and increasing San Diego’s global profile abroad. Learn more at

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.  

Click here to get started.

KCNT1 Epilepsy Foundation, LunaPBC, and Genetic Alliance to Launch Patient-Led Discovery Program

Program incorporates patient-driven study to inform research and drug development for KCNT1-related epilepsy.

SAN DIEGO and WASHINGTON, May 26, 2020 /PRNewswire/ — The KCNT1 Epilepsy FoundationLunaPBC, and Genetic Alliance today announced a program to assemble a patient-led drug discovery community to study disease etiology and develop therapeutic interventions for patients with KCNT1-related epilepsy. The program is being launched in collaboration with Biogen, Inc.

The comprehensive program — inclusive of patients and families, patient advocates, patient-centric data stewardship, and pharmaceutical partners — is deploying patient-driven trial design to ensure the best clinical and behavioral features and trial endpoints are incorporated in the drug discovery process.

In a program kick-off meeting held in Washington, D.C., prior to the coronavirus pandemic, the organizations aligned around a number of key activities and, led by the KCNT1 Epilepsy Foundation along with patients and their families, began enrollment in the discovery community.

Epilepsy of infancy with migrating focal seizures was first described in 1995. Fifteen years later, KCNT1 gene mutations were identified as the major disease-causing gene of this condition. The data on this condition associated with KCNT1 mutations are heterogeneous and many questions remain unanswered including prognosis and the long-term outcome(s) especially regarding epilepsy, neurological and developmental status and the presence of microcephaly.

The program is focused on reshaping the role and experience of study participants by inviting patients and advocates as partners to help with program inception. This format helps guide researchers towards the most accurate observations and endpoints that will be built into the study design to increase participant engagement and retention, to ensure interventions meet the goals and needs of patients, to capture real-world and patient reported insights, and to facilitate comprehensive, longitudinal study. As covered in MedCity News, this study framework also enables patients to participate without leaving the comfort and safety of their home thereby reducing the hardship on families, increasing access to more participants, and allowing the healthcare system to focus on COVID-19.

“The KCNT1 Epilepsy Foundation is forming a research community, founded on the fact that we parents have a lived-experience of this disease that must inform the research,” said Seth Greenblot, who founded the KCNT1 Epilepsy Foundation. “We are calling on all parents and their families to join us to accelerate the quest to alleviate our suffering.”

“Genomics data will be studied alongside longitudinal, patient-reported and real-world information to gain a clearer picture of the patient experience and ultimately better characterize the disease. Modern data stewardship is a key aspect of this process to ensure data is always increasing in depth over time and so that many collaborators can access the data for discovery,” said Dawn Barry, president and co-founder of LunaPBC, the management company behind health data sharing platform, LunaDNA.

“By incorporating what the patients see as important endpoints, observations, and quality of life goals, trials will better address the needs of these families,” said Sharon Terry, chief executive officer and president of Genetic Alliance. “I’ve been concerned that ‘patient-centric’ is becoming a buzzword, and not a reality. This collaboration is an exemplar for making it happen.”

To learn more and determine eligibility to participate, visit to join and help accelerate discovery.

About KCNT1 Epilepsy Foundation
The KCNT1 Epilepsy Foundation aims to provide accurate information for parents and physicians about KCNT1 Epilepsy disease mechanisms, symptoms and treatment options.  We are learning new things all the time, and work closely with researchers and clinicians to provide the most up-to-date information possible. Additionally, the Foundation works to bring the parent-patient perspective to researchers and industry as they work to bring clinical treatments to market.

About Genetic Alliance
Genetic Alliance, a non-profit organization founded in 1986, is a leader in deploying high tech and high touch programs for individuals, families and communities to transform health systems by being responsive to the real needs of people in their quest for health. The alliance is comprised of 10,000 organizations, 1,200 of which are disease and patient advocacy foundations and include community health programs, employee wellness programs, local nonprofits, religious institutions, and community-specific programs to grow and expand their reach and mission.

About LunaDNA
LunaDNA is the first health and genomic data platform owned by its community of personal health information donors. LunaDNA empowers individuals to share their health data for medical and quality of life research. As community owners in the LunaDNA platform, members share in the value created from health discoveries and medical breakthroughs. LunaDNA was created by the privately-owned Public Benefit Corporation, LunaPBC, founded in 2017 and headquartered in San Diego, California. 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.

The KCNT1 Epilepsy program page can be found at

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