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.

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.

 

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.