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. 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.

Electronic Health Record Integration

Give More and Get More With Your Electronic Health Records

Now, you can directly contribute to research and earn ownership shares when you upload your digital health records to LunaDNA™ beginning today!

LunaPBC™, the public benefit corporation behind LunaDNA, reached a milestone today announcing our partnership with Medfusion. The partnership enables LunaDNA members to access electronic health records (EHR) privately and securely on LunaDNA via Medfusion’s Patient Data Application Program Interfaces (APIs). 

The ability to connect personal health records – doctor visit reports, lab test results, and more – with the LunaDNA platform is a giant step towards accelerating health discovery. For the first time, meaningful longitudinal data paired with genetic and lifestyle data will be available for researchers to drive discovery. Since your health data changes over time, combining it with your medication information, your exercise habits, and your genetics, is amazingly powerful for understanding disease and wellness.

Not only does access to health record information help researchers uncover new diagnoses and treatments, it also helps you manage your own well-being. By reviewing your own records on a regular basis, you can have more informed conversations with doctors and caregivers to take control of your health. Take the first step by connecting to your physician’s portals.

Connect Your Electronic Health Records – It’s Easy! 

If you haven’t connected to your Patient Portals yet, all you need to do is contact your doctor’s office and ask how to connect to the portal. They should provide you with a link and login information. From there, it’s pretty simple to log in and access your account and health records.

When connecting your health records to LunaDNA, all you need is the name of your doctor or doctor’s office and your portal login information. We have partnered with a company with over 15 years of experience in the healthcare industry to create and manage these integrations. Your data is synced to the LunaDNA platform, encrypted, and structured to enable downstream research aligned to our consent and privacy policies.  It is also available for you download and review at any time. 

If you need help connecting your EHR to LunaDNA, you can always contact our support team at support@lunadna.com or visit our Twitter status page for updates. 

Take the first step by connecting your Patient Portals to Luna here.

LunaDNA-World-Economic-Forum-Tech-Pioneer

LunaPBC Named 2019 World Economic Forum’s Tech Pioneer

We’re thrilled to announce that the World Economic Forum (WEF) today named LunaPBC™, the public benefit corporation behind LunaDNA™, one of its newest Technology Pioneers — ahead of hundreds of up-and-coming tech companies, worldwide. This designation globally recognizes LunaPBC as a startup breaking health data barriers towards the goal of accelerating health discovery through people-powered research.

Medical breakthroughs and improving quality of life depend on comprehensive, continuous, real-world health data organized to support medical discovery. People are the best curators of their health data, and we need them as partners in research,” said Dawn Barry, president and co-founder, LunaPBC. “This model brings together social responsibility with technology for real-world, frictionless, passive information capture. We can imagine research as a continuous relationship versus a moment in time transaction.”

WEF was established in 1971 as an International Organization for Public-Private Cooperation, engaging the foremost political, business and other leaders of society to shape global, regional and industry agendas.

Since 2000, WEF established the Technology Pioneer community to recognize early to growth-stage companies from around the world that are making waves in the design, development, and deployment of new technologies and innovations, and are positioned to have a significant impact on the world. With this designation, LunaPBC joins acclaimed Technology Pioneers, including Wikimedia, Twitter, Spotify, Google and AirBnB.

LunaPBC is now immersed into WEF’s events and initiatives, where we’ll be at the center of cutting-edge insights and novel perspective in world-changing discussions. From July 1 to July 3, Bob Kain will be in Dalain, China, participating in the WEF Annual Meeting of the New Champions. There, he’ll be discussing the impact of ground-breaking genetics and molecular science related to human longevity in a session entitled, “What If: You Could Live to 150?”. Select awardees will also attend the January 2020 Annual Meeting in Davos, Switzerland to continue contributing to WEF initiatives over the next two years.

LunaDNA-World-Economic-Forum-Tech-Pioneer
LunaPBC team from left to right: James White, Thomas Rodriguez, Debora Thompson, Kirby Bloom, David Lewis, Dawn Barry, Bob Kain, Scott Kahn, Alexandria Leonidova, Bojil Velinov, Mayank Tyagi, Genevieve Lopez
Bob Kain
Bob Kain, CEO + Co-founder at LunaPBC

This exciting news comes just one month after our funding announcement from top tier venture capitalists, including ARCH Venture Partners, Bain Capital Ventures, F-Prime Capital, Illumina Ventures, and Osage University Partners. A few months before, we proudly announced our strategic partnership with Genetic Alliance, the world’s leading nonprofit health advocacy group committed to transforming health research for individuals and communities.

We’re only halfway through  the year and together we’re already paving global paths in health research. WEF’s Technology Pioneer 2019 award is a reminder of the strides we’re making as a community directly contributing to health discovery. Thank you for being a part of this journey with us at LunaDNA.

LunaDNA Partners with Genomelink

LunaDNA Partners with GenomeLink to Offer Members Even More

We’re excited to announce our strategic partnership with Genomelink, the largest and fastest growing web platform that enables members to upload their raw DNA data file and discover more about their DNA identities and traits through intuitive visualization and scientific educational content.

Now, LunaDNA members can contribute their DNA data to Genomelink and learn more about their unique health data, from personality traits, fitness and nutrition, and more.

This partnership allows LunaPBC, manager of LunaDNA, to unite our shared mission with Awakens, creator of Genomelink, and close the gap between individual and researcher by positioning individuals at the center of health discovery. Together, we’re supporting health research, advancing science and accelerating medical breakthroughs.

We are excited to see organizations like Awakens recognizing that modern data stewardship means individuals must come first. People coming together at scale as a data sharing community represents the next frontier in making research more efficient, inclusive, and informative, but it requires earning people’s trust through transparency, reciprocity, and honoring their control at all times.”

Dawn Barry, President + Co-founder at LunaPBC

As LunaDNA’s platform evolves, LunaDNA members will have the ability to earn additional shares by importing their weekly trait data from GenomeLink onto the LunaDNA platform. For now, Awakens invites Genomelink members to participate in the new wave of people-powered health by becoming a pioneering member of LunaDNA and joining a health movement that’s reshaping the traditional health research model.

Awakens believes personal DNA engagement should be a life-long journey for individuals and their families because the knowledge embedded in our DNA is continuously being discovered.”

Tomohiro Takano, CEO + Co-founder at Awakens

This partnership comes just 15 years after DNA Day was officially declared a national holiday, commemorating the day James Watson, Francis Crick, Maurice Wilkins, Rosalind Franklin and colleagues published papers in the journal Nature on the structure of DNA back in 1953. Furthermore, we recognize April 25th as the day when the Human Genome Project was near-completion, with the remaining gaps considered “too costly” to fill. It’s an eventful day in DNA history and we’re thrilled to be celebrating it improving quality of life for all.

LunaDNA is Approved by the SEC

LunaDNA Is Approved By The SEC to Offer Ownership Shares to Individuals for Sharing Data

SOLANA BEACH, Calif., Dec. 5, 2018  — LunaDNA LLC announced today that its securities offering has been qualified and its platform is now open to U.S. residents. LunaDNA is the first community-owned health and DNA data platform to offer ownership shares for contributing personal health information.

The Final Offering Circular for the offering is available at the U.S. Securities and Exchange Commission (SEC) website here. U.S. residents can sign up at LunaDNA.com to contribute data and obtain shares.

Founded by the Public Benefit Corporation LunaPBC, Inc., LunaDNA’s platform is rooted in putting individuals at the center of health research, with unique features for data privacy, voluntary inclusion, transparency, and sharing in the value created from use of their data. 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 people-first model is designed to address previous industry research challenges such as data silos limitation, data usage non-transparency, and value imbalance. 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.

Nothing is more personal than our health and DNA data. LunaDNA, in a precedent-setting move, is enabling individuals to own shares in the company that monetizes their data. This new data paradigm enables a community to control their continued inclusion, learn about studies undertaken with the database, celebrate discoveries, and participate in the financial rewards that come from commercial partnerships.”

Bob Kain, CEO + Co-founder, LunaPBC

Researchers from nonprofits, for-profits, disease organizations, and research communities will be able to query the LunaDNA platform for research studies. Members’ de-identified and aggregated health data provided in response to those queries will help power research at the scope and scale needed for medical breakthroughs. While maintaining anonymity and only with consent, LunaDNA members may further opt-in to receive communications from researchers interested in including them in a research study or trial.

Medical breakthroughs and improving quality of life depend on comprehensive, continuous, real-world health data organized to support medical discovery. People are the best curators of their health data, and we need them as partners in research,” said Dawn Barry, president and co-founder, LunaPBC. “This model brings together social responsibility with technology for real-world, frictionless, passive information capture. We can imagine research as a continuous relationship versus a moment in time transaction.”

Beginning today, you can receive shares for contributing eligible data types, including DNA data files from services such as 23andMe, AncestryDNA, and MyHeritage, on the LunaDNA platform.

About LunaDNA
LunaDNA is the first health and DNA data platform owned by its community of personal health information donors. LunaDNA empowers individuals to share their health data for medical research and the greater good of the community. As community owners in the LunaDNA platform, holders of shares participate in the value created from health discovers and medical breakthroughs.

LunaDNA was created by the privately-owned Public Benefit Corporation LunaPBC, founded in 2017 and headquartered in Solana Beach, 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.

LunaDNA does not provide genetic testing services, as it focuses on aggregating health information that individuals already own to accelerate health research. LunaDNA does not endorse any specific genetic testing company.

Forward Looking Statements
The matters contained in the discussion above may be considered to be “forward-looking statements” within the meaning of the Securities Act of 1933 and the Securities Exchange Act of 1934, as amended by the Private Securities Litigation Reform Act of 1995. Those statements include statements regarding the intent, belief or current expectations or anticipations of LunaDNA and LunaPBC and members of LunaPBC’s management team. Factors currently known to management that could cause actual results to differ materially from those in forward-looking statements include the following: LunaDNA’s ability to attract and retain members; breaches of network security or the misappropriation or misuse of personal and health data; dependence on LunaPBC for funding; market demand for analysis of genomic information and LunaDNA’s ability to recruit researchers to query the database; the need to comply with complex and evolving U.S. and foreign laws and regulations; dependence on third parties to generate data contributed by members; competition; dependence on LunaPBC as manager of LunaDNA, including dependence of key personnel of LunaPBC; the ability of LunaPBC to unilaterally change LunaDNA’s operating agreement and management services agreement; potential for disruption from network outages; failure to maintain the integrity of systems and infrastructure; liabilities as a result of privacy regulations; failure by LunaPBC to adequately protect intellectual property rights or allegations of infringement of intellectual property rights; the general non-transferability of shares and the lack of a trading market for the shares; uncertainty in the ability of LunaDNA to earn sufficient revenue, after expenses, to have sufficient funds to pay dividends to holders of shares; the discretion of LunaPBC as to the declaration of dividends on the shares; lack of voting rights and other typical shareholder rights; potential adverse effects of LunaPBC’s conflicts of interest; and the limited recourse of LunaDNA share holders against LunaPBC for its actions as manager. These and additional factors to be considered are set forth under “Risk Factors” in LunaDNA’s Final Offering Circular and in its other filings with the Securities and Exchange Commission. LunaDNA undertakes no obligation to update or revise forward-looking statements to reflect changed assumptions, the occurrence of unanticipated events or changes to future operating results or expectations, except as otherwise required by law.

For more information visit www.lunadna.com and view the Final Offering Circular here.