Privacy-Preserving Technologies and Rights-Based Privacy Regulation Compliance


There has been increased interest over the past decade over what to do with the growing volume of digital information collected on individuals that are potentially used or sold by companies and governments. This interest is even more heightened when health data is involved and how this data might be used in ways contrary to the interests or values of individuals. In parallel, new data protection laws have passed in many parts of the world and increasingly in several states within the United States that express the control of data privacy as a human right.

It is commonplace to merge the concepts of data privacy and security, even though each has a unique role. Data security is the step taken to prevent unauthorized access to data. A common security approach involves data encryption that requires user-specific information to decrypt the data back to its original form. Privacy-preserving technologies, or PPTs, are a newer class of technologies that support the distribution of encrypted data that can be selectively decrypted to reveal some or all of the data that is encapsulated. PPTs are especially exciting for the sharing of genomic data so that only some of the data is made available to a researcher, which presents a lower risk to the individual for subsequent data misuse.

A common data privacy policy is the right to rescind one’s consent and to have the individual’s data deleted, also known as the “right to be forgotten.”

Data privacy, in contrast to data security measures, is a set of policies that are applied to secure data. These policies typically govern the data collected, the purpose for which the data is collected, and the informed consent granted to the researcher to study the data. A common data privacy policy is the right to rescind one’s consent and to have the individual’s data deleted. This is also known as the “right to be forgotten.”

Security-based protections such as PPTs and privacy-based protections are very different in how they are implemented. With security-based approaches, data are distributed to researchers that are approved to access the data. Once access is granted, the control of the data is lost. Over time there can be many copies of the data that have been granted to multiple researchers, as shown in Figure 1A.

Figure 1A. Once permission is granted data is distributed to uncontrolled environment(s)

In contrast, privacy-based approaches maintain control of each piece of data within an environment that supports the removal of the data if an individual’s consent is withdrawn. Under the privacy-based approach, an individual has a virtual string on their data that supports the pulling back of their data at any time, as shown in Figure 1B.

Figure 1B. Use of permissive data is used within an environment that enforces privacy policies.

The question of which approach is better rests largely on the regulatory environment in which the research is being performed. In Europe, compliance with the General Data Protection Regulation, or GDPR, requires that the data rights of individuals persist when they share their sensitive personal data, such as health data. In states such as California, the California Privacy Rights Act (CPRA) that has come into law in 2023 requires similar protections for individuals. For historic datasets, databases, and biobanks that include genomic data, the use of PPTs has provided a more secure way to distribute such sensitive personal data.


About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data—health records, lived experience, disease history, genomics, and more—for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.


Something Exciting Happened on October 6, 2022, Concerning Your Medical Records


Editor’s note: This article is jointly authored by Luna and Greenlight Health Data Solutions.

The Information Blocking Rule, now in effect, is a new federal regulation we should all celebrate as a big win for control over our health information, a right that we should always have had.

Let’s take a step back in time and then fast forward to today. In recognition of the importance of digital health information for advancing precision medicine, the Information Blocking Rule was a provision of the 21st Century Cures Act which aimed to modernize healthcare data interoperability and update a component of HIPAA that was oriented to paper-based medical records, not Electronic Health Records (EHRs). Part of the motivation to connect EHRs was to improve the portability of one’s health data to multiple healthcare providers and to give direct access to one’s health data using online patient portals. The Information Blocking Rule requires that all healthcare organizations give patients access to their full health records digitally (via a patient portal)–without delays or cost.

Why is this important? The new Information Blocking Rule unblocks access to Electronic Health Information (EHI), which Health and Human Services (HHS) defines as electronically Protected Health Information, or PHI. The significance of this rule has many threads–not least of which is bringing control and rights to the information much closer to the patient–the individual who the data is about, you! You can now review and research your own information to be a more informed patient. You can easily share your data with new healthcare providers if you relocate or change your insurance coverage. You can avoid time-consuming and costly duplication of diagnostic tests, which is commonplace whenever one engages with a new medical professional. You can also choose to share your data with a clinical research study or trial that is of interest to you to advance medical knowledge and health discoveries for society more broadly.

We’ve been advocates for individuals’ rights to access their health information for a long time. Greenlight Health was an early software platform specifically designed to offer patients online access to their health data. Luna has implemented Greenlight’s EHI data-sharing APIs which support connections to more than 90% of the U.S. provider market. This approach allows for the inclusion of EHR data, along with genomic and health survey data, for patient-centered research studies to understand and improve health outcomes. Gathering health information from multiple health systems, and across decades, provides convenience to individuals and their families while simultaneously providing a richness of data to researchers to unlock new insights for health improvements. Such patient-centered studies hold promise to enrich the standard of care more equally for individuals of all ethnic and racial backgrounds.

An essential aspect of inclusive clinical study participation requires that data shared by individuals is done with their informed consent and that the data is not used for other purposes outside the individual’s consent. Luna’s health data sharing and analysis platform uses rights-based data privacy measures to protect access to shared data so that a contributor (you) can remove their data from the platform and/or from any studies they joined with a simple click of a button. By implementing rigorous rights-based data protection and privacy that complies with all current privacy laws (such as GDPR in the EU), Luna provides a path to international clinical studies that can benefit from population diversity globally.

It’s no longer in the medical provider’s control to decide when to release a patient’s information. The Information Blocking Rule is really about information sharing and empowering the patient with ownership of their health data. Under HIPAA, healthcare providers are allowed 30 days to fulfill medical record requests; 60 days is permitted if the provider needs an extension. With this new rule and direct EHI access methods for patients, a healthcare provider cannot “interfere” with the flow of EHI, and it needs to flow without delay. When there are instances of interference, healthcare providers and EHR vendors are subject to financial penalties (up to $1 million per occurrence and/or reductions in Medicare and Medicaid reimbursement). Healthcare providers and vendors lobbied strongly against this rule being passed (in fact, the rule was held up for six years). Days before the rule became effective, 10 of the leading healthcare industry trade associations pushed HHS for a delay. As stated, the rule extends an individual’s right to access EHI through a patient portal. As the name implies, patient portals were designed to support functionality that allows individuals to connect to their medical records whenever needed. The intent of having immediate access to medical records through a patient portal is to provide a mechanism for sharing EHI with other healthcare providers, with family members, and for research.  

It’s no longer in the medical provider’s control to decide when to release a patient’s information.

This rule is one more step toward providing you with a comprehensive understanding of and access to your own healthcare information and, more importantly, control of how your health records are shared.

Taking the power of your health records to the next level, Greenlight Health and Luna combine capabilities to enable you to consolidate your records in one place and safely share your health records and other unique experiences in research studies that are of interest to you. You are in the driver’s seat now. The steps you take next could make a big difference in finding treatments and cures for those who need them most.


About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data—health records, lived experience, disease history, genomics, and more—for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.


Celebrating Software Engineer Oscar Garcia During National Hispanic Heritage Month


When Oscar Garcia was growing up in Tijuana, Mexico, his parents encouraged his interest in computers. Living on the border of Mexico and the United States gave Garcia a unique perspective of experiencing two melding cultures. Today, Garcia is a software engineer at Luna. In honor of National Hispanic Heritage Month, Garcia shared how he was inspired to join the STEM field of computer programming and how his heritage has shaped his career, personal life, and leadership philosophy.

Oscar Garcia developed his love of video games into a career as a software engineer.

What do you do at Luna?
I’m a software engineer. I work with the backend team to do everything on the backend of the Luna application. I work primarily with a lot of business logic, but more into why it’s happening behind the scenes. This October will mark one year for me at Luna.

Tell me about how you grew up.
I’m from Tijuana, Mexico. I was born and raised in Tijuana and have been living here for the past 27 years. Living on the border gave me the opportunity to get to know San Diego and experience both cultures. I had the unique advantage of seeing both worlds. I was very interested in pop culture and technology, including television, movies and video games.

My parents worked all day. So, as a kid, I spent a lot of time with my grandma. My parents worked hard to provide me with an education, and I was very grateful. I remember my father buying our first computer with Windows XP. That was when I started to get interested in computing. I took a computing lab in school, and my passion for computers just grew from there. Video games were a big factor in my decision to take the software development major since it was the spark that got me interested in how software was made. When I got to high school, I entered the world of programming with very simple console applications. Looking at colleges in Mexico, I looked for software development programs and decided on Cesun University. I graduated as a software engineer in 2017.

What aspects of your Hispanic heritage do you think have impacted your work at Luna?
Fellowship. Growing up here on the U.S.–Mexico border, you can see how fellowship is such an important part of the community. It’s one of the core values I’m proud of. At Luna, I want to build a team and work with my team toward a common goal. In this case, it’s building complete software at the highest standards.

What does Hispanic Heritage Month mean to you personally?
Hispanic Heritage Month is a representation of what we value as a community; that we are part of a connected group and have an important role to play together. I’m proud of my heritage and where I grew up. For me, these four weeks are a reminder and chance to tell the world that as a group, we can do amazing things. We have done amazing things.

Growing up here on the U.S.–Mexico border, you can see how fellowship is such an important part of the community. It’s one of the core values I’m proud of. At Luna, I want to build a team and work with my team toward a common goal.”

Garcia says his mother is who has inspired him to be a better person and continue despite challenges.

Was there a particular person who inspired you growing up?
My mom. She’s the person who always inspired me to be a better person. She taught me to stay humble, and that no matter how hard things get, keep pushing. Those lessons she taught me got me to where I am today as a software developer.

Is there anyone in your field who served as a mentor in your field?
I had a professor at university who inspired me to continue to pursue programming. He also kept pushing me to continue to create new goals for myself, to step out of the box, and to approach new jobs or new technologies. Looking back, I can see that I was hesitant or unsure of myself, and he kept pushing me to be more confident and try new things. I admired the knowledge he had of software development, and I looked up to him as someone I wanted to emulate. I strive to be that person who wants to mentor people and share their knowledge with others in the field.

What advice would you give to a young professional in the STEM field?
Keep working hard. Keep innovating. Don’t doubt yourself, and don’t be afraid of failing. It’s where you will learn the most. Another important piece of advice is always to keep an open mind—that’s where the greatest ideas come from. When you have an open mind, you start seeing things in different ways.


About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data—health records, lived experience, disease history, genomics, and more—for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.


Feature Spotlight: Member Accounts

Making what’s important to you easier to find

We’ve made some changes to your member account. Now it’s easier for you to find your studies and see information from your communities and registries.

Member Dashboard

View tasks like “Contribute Data” ready for you to complete

Access studies you’ve joined. You can also access your studies by clicking on the “My Studies” tab

Find additional resources and information on conditions or diseases of interest to you using Disease InfoSearch

Review all the data you’ve shared and patient portal connections you’ve made by clicking on the “My Data” tab at the top of the dashboard

Access your notifications, settings, and logout from the side menu under the colored avatar in the top right of the dashboard

Community/Registry Pages

Your communities and registries each now have their own page devoted to their content. So you can easily find everything related to them all in one place.

View all the studies your community has available

Access special permissions you’ve granted your community organizers

Community/registry-specific messages on the community pages so you can see just the messages from your community or registry

Log in today to see what’s new on your dashboard

Coming Soon: More improvements to your member account are headed your way

A formal messaging center where you can more easily read all your notifications and important messages from study coordinators and community organizers

What’s Staying the Same

Luna remains focused on providing a regulatory compliant platform where you can feel good knowing your data is secure and confidential.

Log in today to see what’s new on your dashboard


About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data — health records, lived experience, disease history, genomics, and more – for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.

Celebrating Joe Beery, National Hispanic Heritage Month 2021


His father had been a talented self-taught engineer who was a machinist building aircraft engines at General Electric. All the while, their family wasn’t detached from practicality. In addition to his job as a machinist, Joe and his father repaired cars, bakery equipment, and meat processing equipment. They lived in New Mexico and spent summers on the farm in Colorado. Joe reflects often on that childhood of necessity, the fixes, and curious tinkering, as his backbone for facing down challenges and overcoming problems through well-thought solutions. 

Joe Beery, CEO at Luna

In college, Joe studied business computer systems and programming at the University of New Mexico, where he advanced his interests in systems integration and software performance optimization, which channeled his talents from farm fields and on to fields in technology.  

This concoction of tech-savvy problem solving led to Joe’s early rise from manufacturing to software development for Motorola, before leading the Company’s semiconductor products division Computer Integrated Manufacturing (CIM) teams. From there, he shifted to the tech aspects of the airline industry, serving as Chief Information Officer for America West Airlines and then US Airways over a 10-year period.  

Amid these successes, Joe and his wife Retta faced tenuous adversity in 1996, realizing their newborn twins — Noah and Alexis — suffered from persistent tremors, seizures, and a mysteriously debilitating loss of body control. Doctors, unable to trace back to the cause, initially diagnosed Noah and Alexis with cerebral palsy.  

The exhibited symptoms, though, didn’t fit this diagnosis, as Joe and Retta continued to see their children spiral in dissipation. Desperate but determined, Joe and Retta retooled. Equipped with an outlook for facing down challenges and solving complex problems, Retta poured herself into research, sought research studies for Noah and Alexis to participate in. Ceaselessly, for years on end, until they landed on solutions.

Technology, problem-solving, and perseverance coalesced in 2008 when Joe took his career into biotechnology, at Invitrogen, the biotech company that became Life Technologies and was later acquired by Thermo Fisher Scientific.  

Their family now existed in the realm of science and solutions, and Retta sought to have Noah and Alexis’s DNA samples sent to Baylor College of Medicine for sequencing analysis. There, answers began coming back. Noah and Alexis had genetic mutations affecting the synthesis of dopamine and serotonin, far afield from initial diagnoses of cerebral palsy. Doctors accordingly modified their treatment to include adding the serotonin precursor 5-hydroxytryptophan (5-HTP) to their treatment. Noah and Alexis quickly rebounded and thrived.   

The perseverance of parents unafraid to face down problems, teamed with evolving opportunities in health discovery and advancing technology, helped Joe and his family to live strong, healthy lives.  

Now, as Luna’s Chief Executive Officer, Joe is scaling its platform to further unite people, communities, and researchers to accelerate health discoveries. “It took 15 years to get a definitive diagnosis to treat their rare genetic disorder, “Joe said. “Today with Luna, we would have found that in 15 months.”  

In honor of Hispanic Heritage Month, Joe shares more with us about his life and career journey, and how he became a prominent health tech executive spearheading health initiatives for the greater good.  

Hi, Joe.  Thanks for taking the time to  share more about your life and career journey.  Can you share more about your life growing up as young Joe?   

My mom’s maiden name is Velasquez. She grew up in southern Colorado and did not speak English until she went into high school. My dad grew up in Elkhart, Indiana. They met when he was stationed at the Army base in Colorado Springs. I was the first grandchild within both families and blessed to have both cultures influence my life growing up. I spent my summers on the farm with the Velasquez family, which included my grandparents, uncles, aunts, and cousins. The winters were spent in Albuquerque, New Mexico while I was in school. I was fully emerged in the Hispanic culture. 

Diversity is not about your looks or your ability to speak a language but how you think and your life experiences.”

When did your interest in tech start? What inspired you to eventually take this career path?  

My father did not go to college. In fact, I got my high school diploma before he did. Despite that, he is one of the most gifted engineers I have ever met. He eventually worked for most of his career at GE building aircraft engines. From a very early age, I learned to repair equipment and was interested in how machines work. We did many side jobs together. When I went to college, I was driven to be an industrial engineer. In my early days at the University of New Mexico, I found that I was more interested in the computer side of the engineering discipline. I would write programs for my fellow students, and they would do my calculus homework. This was the point in time that I realized that I was going to pursue a career in information technology.   

How has your heritage shaped your career today? What aspects of your heritage do you think have impacted the culture of your workplace?    

Overall, I think that my heritage has shaped me in two very specific ways. The first is my work ethic. Coming from a mixed family and from a minority group, I learned the value of working hard, working long hours, and going above and beyond to earn what you make.  The second is my perspective on diversity and what it means. I do not have the features or the last name, but I am at my core Hispanic. This makes for very interesting conversations in the workplace when someone finds out I am Hispanic and then asks if I speak Spanish. Diversity is not about your looks or your ability to speak a language but how you think and your life experiences.  

Well said.  Let’s talk more about your role as CEO of  Luna. What excites you most about your leadership role at Luna, personally and professionally?     

Luna is a super exciting company. We have all the elements that make for life-changing moments for individuals and researchers who use Luna, investors, and employees. We have a great product, incredible team members, and most importantly, we change the quality of life of people. I have had a wonderful career for over 30 years, and I want my legacy to be about what we do at Luna.   

Inclusion is recognizing the value of everyone’s lived experience and creating an environment that not just respects that but leverages that for the good of the individual and the team. ”

What do diversity and inclusion mean to you? 

 Diversity to me is about lived experiences and what lens an individual can use to solve a problem. It is connected to all aspects of an individual.  Inclusion is recognizing the value of everyone’s lived experience and creating an environment that not just respects that but leverages that for the good of the individual and the team. 

What one piece of advice would you give to others passionate about becoming leaders in technology? 

Technology is one of the most available careers. We can work and grow in technology regardless of where we live, how much education we have, and what our desire is to do. My advice is to use all these aspects to focus on the element that excites you and to use your heritage as a motivator and lever to expand in the field.   

Finally, what would you like your legacy to be?     

I want my legacy to be a combination of three things. First, is my faith and family. My greatest accomplishment is my relationship with my wife and my children.  Second, is my ability to be humble but courageous and always put the customer, employees, and the company first. Finally, I want to be known for working for companies and producing products that impacted people’s lives. 


About Luna

Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data—health records, lived experience, disease history, genomics, and more—for research.

Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.

By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.