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.

 

COVID-19 Study Early Insights

COVID-19 Study’s Early Insights Shed Light on New Trends 

Since the launch of our COVID-19 Study in March 2020, LunaDNA members have submitted over 340,000 responses to gather physical and mental wellness information directly from individuals during this global pandemic.

Early insights we previously released in July revealed that one in six participants had taken a COVID-19 test and nearly one-third had tested positive. Today, we can identify a new shift in trends that better represent the current state of the world.

Across the globe, members have expressed how they are impacted by COVID-19, their current health conditions, and the behaviors they have since implemented into their daily lives. Based on our recent collection of survey data, nearly 1 in 20 respondents have tested positive for COVID-19, where 25–44-year olds were more likely to test positive than any other age demographic.

Other preliminary insights from the survey data reveal that of those who have tested positive, 41.5% have an existing health condition.

The following infographic shares key findings on this unique demographic’s behaviors, including how 100% of these respondents are practicing social distancing and only 13% have sought care from a hospital of health care facility.

COVID-19 Study Excerpt
Click Image to View More Insights

Different than many institutional studies, the ongoing LunaDNA COVID-19 Study offers people and communities easy-to-use 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 collaboration@lunadna.com 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 discovery@lunadna.com.

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.

This is an ongoing study and is open to everyone from all over the world. We encourage you to share your experiences during this unique time to build a representative body of knowledge and help scientists better understand this global pandemic.

Click here to take the new vaccine survey in the COVID-19 Study.

Data Privacy Protection

How To Maintain Data Privacy in Today’s Uber-Connected World

By Bojil Velinov, Head of DevOps and Automation at LunaPBC

2020 may be coming to an end, but it marks the beginning of the decade in which we had the largest amount of baby-boomers entering retirement age.

It is also the decade for coming of age for the last millennia generation. In the previous decade, the telephone, radio, and TV had a big influence on their lives. Now, internet connectivity, social networks, and instant information is changing everything we knew about communication. Both generations benefit from the exposure and existence of technology, or what we now have evolved to call, “high-tech.”

While earlier technologies were rendered as one-directional communication, new technologies have evolved to ingest vast amounts of input, processes, all while delivering information to us more quickly, efficiently, and accurately. Both past and current technologies depend on personal data to validate themselves and improve their services.

In today’s über-connected world, data privacy is more important than ever before. Everywhere we go, we leave behind a trail of data breadcrumbs that share valuable information about who we are and what we do. Whether knowingly or unknowingly, we often victimize ourselves to fulfill our desire for high-tech convenience. But even the simplest activities, like checking the weather or connecting to a free WiFi network, can put our data at risk. With modern internet-connected devices literally in the palm of our hands, we are constantly under indirect surveillance. Sites we visit regularly, products we engage with on social media, articles we read on search engines all contribute to our digital profiles. 

This raises the questions, how much exposure of our private lives is beneficial to ourselves and society? How much of our private data is monetized with no direct benefit to us as the creators? These questions contain many perceptions and tangents and raise many conversations between team leaders at LunaPBC. We strive to understand all arguments related to data collection, but always resort to the unanimous agreement that people belong at the center. Until every company aligns with our values and beliefs, it’s at least assuring to know that data privacy is headed in the right direction, with the implementation of the General Data Protection Regulation (GDPR) and California Consumer Privacy Act (CCPA). I’m anticipating other federal and state legislative initiatives aimed at protecting individual data on the horizon. 

Privacy is directly connected to our liberties, but liberties don’t exist in a vacuum. We all have to, more-or-less, agree on what’s right even as complex social organisms. For society to not only exist but thrive, liberties should require justice, and achieving this may require individuals to partially share some privacy. In other words, individuals, as integral members of the society, should always be in control of their privacy. Our actions, demands, and understanding of privacy can help us shape a “new” internet, and with that our continuous stream of data.

Obtaining data privacy, reducing your digital vulnerability, and maintaining control starts with protecting your passwords.  

Don’t Make Your Password Easy to Guess

  • 123456 and password are the most commonly used passwords. Don’t use them.
  • Switching a letter for a symbol (p@ssw0rd!) is an obvious trick hackers know well.
  • Avoid favorite sports teams or pop culture references. Use something more obscure.
  • Don’t use a single word like sunshine, monkey, or football. Using a phrase or sentence as your password is stronger. 
  • Don’t use common number patterns like 111111, abc123, or 654321.
  • Adding a number or piece of punctuation at the end doesn’t make your password stronger

Create More Than Just a Strong Password, Create Various Strong Passwords

  • The strength of your passwords directly impacts your online security.
  • Use a password manager to remember all your passwords.

Kicking off the decade with data privacy top of mind can ensure you have yourself safe and secure years ahead. 

Man checking his smart watch

Your Data Will Improve Your Life in the Very Near Future

By Bob Kain, CEO + Co-founder of LunaPBC

One day in the near future, we’ll wake up in the morning and the first thing we hear will be a personal digital assistant providing us information on our relative mental and physical well being without having to ask.

Based on continuously streaming wearable or implantable device data, interactive gamified surveys on our phone, our health histories, microbiome and genome profiles, artificial intelligence algorithms will continuously monitor our health, searching for early symptoms of disease, chronic condition flare-ups, or assisting us with diet or fitness goals. Today’s data innovations are not only ground-breaking, they’re life-changing.  

Artificial Intelligence’s (AI) power will be unleashed when there is comprehensive, detailed, and longitudinal data available at population scale. AI combined with continuous data contributions over time, by individuals, will power discoveries for society, while also enabling personalized medicine for the individual. In the near future, complex health and medical problems will be solved at an exponentially increasing rate,  ultimately improving quality of life for all. 

But this vision of our future is not limited by technological innovation. Rather, it’s limited by people’s trust or lack thereof in any organization working to collect comprehensive individual data. How many people will willingly and continuously contribute detailed personal health & medical data to organizations that they don’t have a deep, trusting relationship with? And consumer trust can only be earned by enabling individuals to control their data, know when and how their data is being used, and share in any windfall gains earned from the data.

That’s why the public benefit corporation, LunaPBC, founded the LunaDNA Platform, a data-sharing and research discovery platform. Anyone and everyone can remotely, digitally, and easily participate in science, with privacy protection, full data control (consistent with CCPA & GDPR), as well as transparent operations. LunaDNA is accelerating medical breakthroughs by advancing people from subjects of research to partners in discovery. Through this community data-driven discovery, the most important questions are answered, the right problems are solved, and people’s lived experiences are included in cutting-edge studies and trials.

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.

Stressed woman wearing surgical mask

Know Your Health: Is Anxiety Genetic?

By LunaDNA Contributing Writer 

Many people experience anxiety during their lifetime. However, anxiety is not normal if it takes over your life.

A genetic predisposition for anxiety can trigger an over-the-top response to a low-key event. There are many risk factors for anxiety disorders including genetics, personality, brain chemistry, and external influences.  

Learn more about anxiety, including:   

Generalized Anxiety Disorder 

Generalized anxiety disorder is a chronic condition characterized by incessant and excessive worrying. A person with this disorder expects the worst, even when there is no plausible reason to do so. Feeling anxious for no reason is a common sentiment for those with this condition.  

According to the National Institute of Mental Health, generalized anxiety disorder sometimes runs in families. It’s unknown why some family members have it while others do not. The specific cause is unknown, but it is suspected that it’s a combination of family history, biological factors, and stressful life experiences.  

Symptoms may include: 

  • worrying too much
  • feeling nervous
  • feeling restless
  • difficulty concentrating
  • being easily startled
  • having insomnia
  • feeling exhausted
  • feeling irritable
  • sweating
  • feeling light-headed
  • feeling out of breath
  • difficulty swallowing
  • trembling
  • having to go to the bathroom frequently
  • having headaches
  • having stomach aches

Treatment by a doctor may include therapy and/or medication. 

Panic Disorder & Panic Attacks 

Panic attacks are recurring sudden attacks of terror that often come with debilitating physical symptoms. The episodes can last minutes or hours. A trigger may bring on the attacks, but often they arise for seemingly no reason. Symptoms include accelerated heart rate, trembling or shaking, having trouble breathing, sweating, feeling out of control, or feeling doomed. Because panic attacks are traumatic, some people with this disorder constantly worry when the next attack will occur and avoid places or situations. This can lead to another anxiety disorder called agoraphobia, which is the fear and avoidance of certain places or situations that might make you feel helpless or embarrassed. 

If left untreated, panic attacks can turn into a panic disorder. This occurs when a panic attack is followed up with a month or more of intense and constant worrying about the next panic attack and the fallout from it. However, not everyone that has panic attacks has a panic disorder. Treatment by a doctor for both conditions may include therapy and/or medication. 

Social Anxiety Disorder 

People with social anxiety disorder fear being in social or performance situations in which they might be judged negatively or be embarrassed. While it’s normal to get stage fright, people with this disorder tend to avoid public situations and human contact.  

Symptoms include blushing, accelerated heartbeat, sweating, trembling, nausea, lightheadedness, trouble breathing, and muscle tension. A typical response to this anxiety disorder is to avoid social situations whenever possible. Treatment by a doctor may include therapy and/or medication. 

Symptoms of Anxiety 

Although there are various types of anxiety disorders, many signs and symptoms of the types are similar including:  

  • accelerated heart rate
  • hyperventilation
  • sweating
  • shaking
  • sense of doom or panic
  • nervousness
  • restlessness
  • tension
  • tiredness
  • difficulty concentrating
  • insomnia
  • gastrointestinal issues
  • inability to stop worrying
  • having trouble controlling urge to avoid trigger events

Is Anxiety Genetic? 

Several parts of the brain play a role in fear and anxiety, so its genetic connections are complex. Through continued research, collecting data, and by learning more about how the brain functions in particular anxiety disorders, researchers can help create better treatments.  

Anxiety can be triggered by certain external events, and people with certain predispositions may be wired to react anxiously. It is possible that both genetic and environmental factors contribute to an anxiety disorder.  

While the link between genetics and anxiety is still unclear, it has been shown that anxiety disorders run in families. Genetically-linked brain disorders are complex, and more research needs to be done to truly understand whether or not anxiety is hereditary. 

Anxiety Diagnosis  

Diagnosing anxiety can be complex, so it is important to see a doctor or psychiatrist to get properly evaluated. A doctor may start with a physical exam to see if there is an underlying condition causing the anxiety. Laboratory testing of blood and urine samples may also be needed to rule out other possible causes. The doctor will look at medical history and ask questions to determine the proper diagnosis. If you experience some or all of the symptoms of anxiety, consult your physician. 

Treatments for Anxiety 

Treatments for anxiety vary largely based on the type of anxiety, root cause, and each individual’s situation and symptoms. A doctor decides how to treat patients based on what they need to function better in daily life. Two primary avenues of treatment are most common: recommended therapy to relieve stress and the use of anti-anxiety medication. Depending on the severity of an individual’s anxiety, a physician may recommend both therapy and medication as the best treatment.  

The field of pharmacogenomics, the study of how gene’s affect drug response, is making great strides in identifying which medications and dosages work better based on a patient’s genetic makeup. However, more research is needed to understand exactly how genetics plays a role in anxiety disorders and brain chemistry. As research continues, meaningful scientific breakthroughs will lead to better prevention and treatment of anxiety disorders. 

Luna is bringing together individuals, communities, and researchers to better understand life, including genetic traits like anxiety. 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.