Dawn Barry, LunaDNA

Looking Ahead Into 2021 and Beyond — a Letter From the President, Dawn Barry

By Dawn Barry, President and Co-founder, LunaPBC

Welcome to the New Year, LunaDNA Community.

Your passion and commitment to creating health solutions these past few years has inspired all of us. You’ve continuously reinforced that the LunaDNA mission is not just ours alone, and that we are all in this together. As we approach 2021 with optimism and hope, we’re confident in our pursuit of redefining relationships between people, communities, and scientists towards better health for all.

One thing we learned from 2020 is that times of emergency have a clarifying effect. They tend to surface what’s truly important to us versus what we might have assumed was important. These times have also reminded us of the importance of establishing a deeper understanding of health and disease, and how vital these understandings are for all people. Through this lens, we proudly reflect on Luna’s top guiding principles.

Consumer Data Privacy Empowers Participation in Science

From meetings with lawmakers in Sacramento, California to quotes in media articles, Luna actively maintains the position that when people have privacy protections, they lean into opportunities to share their information for research. Further, we believe that we can achieve a sorely needed level of data inclusiveness through such privacy protections.

Throughout 2019 and into 2020, we saw steady advancements in consumer privacy laws, most notably Europe’s General Data Protection Regulation (GDPR) and California’s Consumer Privacy Act (CCPA). The momentum toward rigorous data privacy regulations were no doubt necessary at a time where there nearly weekly reports on mismanagement, misuse, and consumer data breaches by big tech companies, banks, law enforcement, and healthcare systems.

The core tenant of these consumer privacy laws is quite simple: honor the individual and their intents — versus the institution that stores their data — as the one who should decide what entities holds their data and for what purposes. These laws also empower people to remove their data at will – ultimately enabling people to have control over their most personal, private information.

This evolution awoke a cultural consideration: should data privacy be a fundamental human right, and, if so, what events could supersede such a human right? The COVID emergency instigated the societal conundrum of trading consumer privacy rights in exchange for cooperative data uses that benefit the whole. Only time will tell how this exchange will impact us as individuals, families, and an international community.

Looking Ahead into 2021 and Beyond

Meanwhile, amid the chaos of December 2020, big tech companies made significant updates to their privacy policies — Apple going in a positive direction, Instagram going in a negative one. While minimally highlighted in the media, privacy policy updates to consumer data usage have many people concerned about using certain apps. Some updates, which you tacitly allow just by continuing to use the product, allow third parties to view and analyze the information captured through your phone camera; copy your address book, call log and SMS history, and reach through to other devices you own to capture your online activity.

At Luna, we know people hold the power to transform discovery by simply sharing what they already know about their experiences in health and illness. When we come together as a community of all backgrounds, ages, environments, and share this information for study in a structured way, we can surface more robust answers faster. Even better, we can advocate for what’s essential to our health, beyond just pills and doctor visits. Look no further than COVID-19 data insights: we can clearly identify that different communities have very different challenges, and science is still working to clearly understand why, while also wrestling with the community’s deeply rooted issues of trust, privacy concerns, and possible discrimination.

Luna is a new model for social and cultural engagement that empowers health for all. Just as people came together to change how we rent properties and request rides, so too can we change how we surface health answers. Together, we built Luna from a foundation of putting people’s needs for data control, privacy protections, and transparency first.

Now it’s time. While we’re all experiencing health in a whole new way — to show the world that our data is ours and it’s valuable — we can put it to good work by coming together for science.

In 2021, we invite you to continue to help us realize our collective vision by joining our ever-expanding studies and inviting others to join, too. Only together can we overcome barriers life throws our way.

A man jumps in the air at the top of a mountain ridge

Power Your Personal Health Journey This New Year

Bob Kain, Chief Executive Officer at LunaPBC

As we ring in the new year with health and well-being top of mind, it’s highly beneficial to proactively manage our health efforts with a complete understanding of what “good health” truly is. Some may argue that good health is the mere absence of disease or infirmity, however according to the World Health Organization, good health is actually the state of complete physical, social and mental well-being.

For years, my wife experienced chronic migraine headaches. In order to proactively manage this condition she kept a diary, tracking the details of her experiences, from how she feels each day, to her activities, and what she eats. As a result, she’s identified patterns of health and migraine triggers beyond what her doctor has been able to identify. Based on her findings, she adopted a Gluten-Free and Dairy-Free diet and participates in daily exercise to alleviate the extensities of her headaches and prevent any further health issues.

My wife is one of many people who live with chronic health conditions. According to the National Health Council, 40% of the US population suffers from some type of chronic condition, including but not limited to fibromyalgia, depression, digestive problems, arthritis, and lack of focus. So what can we do about it? Much of the low-hanging-fruit, in terms of understanding the causes of various diseases has been identified but the diagnosis for the remaining conditions involve putting patients into “clinical buckets.” These diseases that remain untreated are more complex and remain medical mysteries. Discovering the underlying basis of these unsolved conditions requires the analysis of a deep data collected over time, including genomic, EHR, and private or daily personal data. Acquiring this data requires the participation and engagement of hundreds of thousands, if not millions, of people.  Institutions are therefore dependent on the trust of individuals to enable broad data sharing, however once trust is earned and data flows to the institution, what’s the incentive for  the individual to keep contributing? Why should we contribute our personal and health data in the first place and continue to contribute this data over time? What will we receive in return for our efforts?

Sharing data will enable all of us to live longer,  fuller, more fruitful lives. Contributing health and medical data to support research will accelerate health discoveries, enable people to better achieve personal health and fitness goals, while also enabling personalized medicine for all, and early disease detection.”

Studies show that 10% of our health is determined by what happens within the walls of a healthcare provider, 30% by our genetics, and 60% by environmental and behavioral factors. This last 60% is only accessible with the engagement of the individual. Discovering the basis for complex diseases can happen using artificial intelligence to analyze very large sets of genomic, medical, environmental, and personal data. Once enough people with the same illness or condition, and in many cases similar genetics, health habits, demographics, etc.,  share their data, artificial intelligence programs will decipher the underlying causes of the condition. AI can determine why a condition may specifically affect some people and not others despite having the same genetic markers or environmental exposures. Family, friends, and others in our community will reap the benefits of these discoveries for generations to come.

When we share our personal health information, each of us can use our data to assist us on our own health or wellness journeys.”

My would have loved to have a central place to record her health information instead of writing in notebooks. Moving our health information from conversations, jotted records like my wife’s, EHR’s, or even data that we haven’t shared or documented yet, to a structured, central location, will assist us on our own health and wellness journeys. If stored correctly, the data can fuel artificial intelligence algorithms that will help us find the links between our daily routine and the status of our chronic disease. Was the chocolate my wife ate the day before a trigger for her headaches, or did her hard-gym workouts in hot dry weather bring on the migraine? On a simpler note, routine analysis could help us manage our weight, achieve our fitness goals, and steer away from behaviors that lead to lifestyle diseases such as high cholesterol, hypertension, and diabetes.

At some point in our lives many of us, or our family members, may suffer from debilitation chronic or acute diseases, such as early onset childhood ailments, cancer, and Crohne’s disease. Genomic data is changing the way we treat children with early onset diseases and diagnose the molecular basis for most cancers. Microbiome data is sequenced in our quest to understand gut ailments, such as Crohne’s IBD, and SIBO. The new problem we are facing today is that in many cases the penetrance of the genomic marker is low. In other words, for some ailments all persons with the exact same pathogenic mutation or modification of their genome do not all come down with the disease. The genomic mutation does not guarantee a person will suffer from the ailment or when in life it might occur. The genomic marker is not 100% penetrant. The reasons for this are many fold and not always understood. The causes of these conditions are often a complex interaction between different aspects of our lives including our genome, microbiome, environment, and our daily habits. Do we drink, smoke, exercise daily or work stressful work hours? The answers are within our grasp. Technology barriers are not the issue. The challenge is collecting deep data over time at scale.

If we convince enough individuals to share data deeply and over time, we will accelerate our ability to understand the underlying basis for most diseases and chronic conditions.”

Individuals would then be rewarded through the use of their personal data to help on personal quality of life improvement journeys whether the journeys be about resolving personal conditions or achieving personal goals. The data would first enable precision medicine for all participants while  improving our day to day quality of life, our health, and provide the satisfaction of helping others with their own personal health journeys.