Genomics has very quickly grabbed the world's attention. Businesses are developing new opportunities based directly on our DNA, including wines, meals, and even artwork. Direct-to-consumer DNA tests administered by 23andMe and are unlocking a new wave of personalized advertising.

Personally, I find this new form of genetic advertising both catchy and ridiculous. It led me to conclude in early 2017 that your genome was about to become the next Facebook. In terms of public perception, that might not be a good thing. Facebook (META -1.63%) saw data privacy issues flare up again last year, with Mark Zuckerberg promising Congress that his company was no longer releasing user data to third parties, vowing to enact controls to limit data access internally, and he even issued a public statement about building a new privacy-focused messaging platform -- a pretty bold statement from a company that made $55 billion in targeted advertising revenue last year.

Bringing this back to genomics, our DNA code is the ultimate form of personalized data. It would be extremely valuable to the medical community if doctors could prescribe treatments tailored to the DNA of individual patients, or if pharmaceutical companies developed more effective drugs thanks to a more intricate knowledge of the disease's genetic elements. The correlations are beginning to form between specific genes and health outcomes, unlocking a new era of accelerated scientific progress. 

A woman and numbers in a DNA helix

Image Source: Getty Images

But data privacy remains the elephant in the room. There's already a growing frustration about social media and websites sharing our voluntarily provided interest in cats, football, or reality TV. So how can the medical community obtain this valuable genomic information without igniting massive public backlash or creating the risk for breaching people's medical privacy?

LunaDNA's innovative solution

A fairly new company called LunaDNA may have cracked the code. Founded last year, LunaDNA began working on a community-owned approach that encrypts DNA information on a blockchain. Users could give their permission to access this information, letting them have control over how and where their information was being used. 

The aspect of control might be the key. Rather than selling our information to be mined by who knows what, we can choose to contribute our DNA (as well as a variety of other healthcare information) to help both ourselves and others. Psychologically, there's something powerful about voluntarily sharing information with a community when you know it will benefit the greater good.

Luna will even financially reward you for contributing your gene information. Users who upload their DNA become part-owners of the platform (similar to a co-op), and derive financial benefit as the information is used by doctors, academic researchers, or drugmakers. If for any reason you want to stop sharing your information at a later time, there's no penalty for doing so.

LunaDNA's platform officially went live in December, and the Securities and Exchange Commission (SEC) approved the ownership-sharing structure. Users can now create accounts, share their genomic information, and start financially benefiting as the platform expands.

I find this to be a compelling and innovative opportunity. I've personally already taken a consumer DNA test and a pharmacogenomic test, and was very intrigued by the results of each.

To learn more about LunaDNA's offering, I spoke with LunaDNA president and cofounder Dawn Barry. Previously, she worked as an executive at Illumina (ILMN -0.79%), where she drove the genomics company's emerging business ventures. Luna received an early investment from Illumina Ventures, which is an independently managed entity that invests in companies pioneering new applications for DNA sequencing.

Barry described the people-first principles the platform is built upon, how the information is being used, and how contributors are financially compensated. She also mentioned several things that investors interested in genomics should keep an eye on right now. 

A full transcript follows the video below.


Simon Erickson: Hi everyone, Motley Fool Explorer lead adviser Simon Erickson here. I'm joined this afternoon by Dawn Barry. Dawn is the co-founder and president of LunaDNA. Dawn, real pleasure to be here with you! 

Dawn Barry: Likewise. Thank you so much!

Simon Erickson: You have some big news. LunaDNA's platform has now gone live. What's going on?

Dawn Barry: Yeah, so we went live on December 5th. We were SEC qualified and went live immediately after that. We soft-launched, so we're very quiet about going live. But the platform is up and running, accepting data for shares of ownership in the company as we talked about and envisioned. So we've been open for about a month and a half now in the soft-launch capacity. 

Simon Erickson: Perfect. And a reminder, LunaDNA is actually collecting genomes, collecting your DNA that can be shared on a blockchain with other members or other parties. How does this actually work?

Dawn Barry: So we're currently accepting health surveys and DNA data. As we go throughout the year, other types of data will be included.

And so how it works is individuals come to the platform, they create a membership profile, they look at the consent, and they can start the process of uploading various health data. And what happens is when we all come together as a community -- a health-data sharing community (different than selling -- that's been a theme at the conference today) -- when we come together as a health-data sharing community, this opportunity to create a very rich, longitudinal continuous research asset happens. And so we get to certain points of scale, and later in the year we can start talking about discovery opportunities against that data. 

Simon Erickson: Sure. So I might contribute health data to this platform because I want to help researchers [or] help the scientific community make progress on what they're working on. 

Dawn Barry: Absolutely. Also, I think it's important for us as individuals to capture and collect our health data. If you have that data and something happens in the future -- statistically, that's what happens, we get sick, we develop disease -- I think it's personally exciting to be able to also securely store that data up until that point. So when you look back and say: "You know, what was I doing? Was I exercising, is there a predisposition in my genome, et cetera," you'll have that data to look at. 

Simon Erickson: I can't ask which clients you're working with right now. But I would like to know, what do you want the outcomes of this to be? What do you hope LunaDNA to empower in the future of medicine?

Dawn Barry: Well, in terms of partnerships, I'm happy to share that we announced a partnership with Genetic Alliance. So that's a 30-year-old institution founded on people-first principles. So it's always important as a new company to partner with those that you admire and trust. Their platform, called the PEER Platform (Platform for Engaging Everyone Responsibly), has been a leader in organizing communities under a research question. Helping communities create a research agenda, start collecting data. The PEER Platform and the LunaDNA platform will come together such that we can continue that process. Again, start aggregating, organizing, structuring, creating a research readiness around that data. So the two platforms coming together present an opportunity, from community creation all the way to research readiness. 

Simon Erickson: And what is the information that researchers want to get out of the platform? Are they looking for correlations so they can design better drugs? 

Dawn Barry: When we built the platform, we started very specifically going to those we look for to being as customers and saying: "What is the research you want to do? Not what you've been constrained to do, but what do you really want to do?" And what we understood was, we don't really want to just do research based on a disease category. We really want to do it based on phenotype. We don't want it to be just retrospective. We would love it to have retrospective nature, but also continuous longitudinal. We would like it to also include contextual information -- so lifestyle, environment, nutrition. And there's a growing appreciation, too, that we want people involved as partners, not just as sources of specimens. Because we want to create a continuous relationship. So in two years and four years, we can check back with those individuals and see how their health state has changed.

So that's the type of research we heard, that researchers want to do. And we're operationalizing those principles in our platform. 

Simon Erickson: Tell me about that partnership. How have you incentivized this to actually convince people --- maybe not even "convinced," but give an incentive to people -- to provide their DNA or their health data?

Dawn Barry: Yeah, so I would say people tend to segregate into data-engaged healthy people and then others with more proximity to disease. [As a hypothetical example] So I'm struggling through a disease, a family member I'm helping. 

So on the side of the healthy, data-engaged, what we're hearing now -- because we're open and we can actually ask these questions -- is what's resonating with them is the opportunity to get in the fight against disease. To really pull on those altruistic opportunities. But also, they're very interested in getting shares in what could be a very valuable platform. So altruism and rewards, in that community.

The other community, that has greater proximity to disease, really wants an opportunity to accelerate care for that individual as well as the next patient. "Help us create opportunities with researchers so we can improve the health of our community." That's more of a utility and community value proposition. 

So those four pillars -- the rewards, the utility, the altruism, and the belonging -- are really the four pillars that we're really starting to see come forward in the different people that have come on the platform already. 

Simon Erickson: Certainly, Dawn. But data privacy is still a big topic, and a very hot topic around here! Especially here at the Wall Street Journal tech conference, that we've talked about. This is the ultimate private data, your own genome. Is public perception a challenge as this moves forward?

Dawn Barry: I think in any new field, and innovation in general -- whenever it's new there's awesome opportunity. But there's also opportunity to do harm. We have to go into this eyes wide open. 

One of the distinctions I like to draw is this idea of selling your DNA versus sharing your DNA. Selling, in just its construct, is: "I am relinquishing control. I am giving you ownership. Now you get to do what you want with it. You can resell it. You can give it away to somebody. You can make copies of it." That means you've lost control.

The distinction I like to draw, in this case, is you're sharing your data. It is still yours. It is still permissioned by you. You can un-share it if you wish. You can delete it from the platform if you wish. But I'm not taking it from you. You're permissioning and sharing with a community that is formed for the greater good of accelerating research. 

And so, when you think about privacy, I do think people should think very long and hard about: "When my data is generated in a system, what rights do I have? Am I truly controlling that? What are my ownership rights?" And understand what's right for you in those relationships. 

So we're asking you to share your data. But if at any time you want to un-share, you pull your data out. No copies are made, none have left the system. And that's how we're tackling privacy. In addition to members of the platform being de-identified. So no personal identifiers are in the system. 

Simon Erickson: Certainly. So the permissions is a very key aspect of this thing. 

Dawn Barry: It is the first principle of people-firstness. It is privacy, and then control, transparency, and sharing in the value created. Everything we do is operationalized under those principles. 

Simon Erickson: Absolutely. And Dawn, our audience is individual investors. We know that Luna is not a publicly traded company. Your previous company Illumina is. 

As you see what's going on in genomics right now, what are a couple of things that you think we should be keeping our eyes on as investors in this space?

Dawn Barry: O.K. So I would keep your eyes on ... I just think this opportunity, it's not just the GATCs [Guanine, Adenine, Thymine, and Cytosine are the nucleotide building blocks of DNA]. And it's not just them with EHRs [Electronic Health Records are what store a patient's health information]. Let's really think about all of the contributors to health and disease. Our environment, our lifestyle, nutrition.

Right? If we bring all of that information together, what a research asset that could be. 

To do that, I believe people are the best curators of a health profile. And I believe putting people at the center, to permission that data, makes a lot of sense. And that's not just good for people, but it's good for research. 

So I think a lot of investors, in thinking about the genomics space and even the discovery space, really understanding the models that are being pitched to them, and how are we honoring the individuals in this? I think 2019 will be the year of people-driven research. 

Simon Erickson: Great! Well, Dawn Barry, again, a very innovative and progressive founder. The company is LunaDNA. Dawn, thanks very much for your time this afternoon. 

Dawn Barry: Thank you so much!

Simon Erickson: Thanks for tuning in. And until next time, Fool on!

Check out the latest earnings call transcript for Illumina.