Have you ever watched an athlete completely physically dominate a sport? Do you have a friend who never seems to get sick? Or have you ever wondered how the heck Ozzy Osbourne can possibly still be alive?
If so, then you're already familiar with the phrase, "It must be in the genes."
The popular saying is actually scientifically true. Our DNA serves as the code that ultimately determines our height, weight, and how effectively our immune system fights infections. (As for Ozzy, he metabolizes substances differently and has direct Neanderthal lineage.)
In fact, there has been a huge recent push to learn more about the valuable genetic information stored in our DNA. Direct-to-consumer companies like 23andMe and Ancestry.com offer personalized tests and provide comprehensive reports on what they find. I even claimed last year that your genome may become the next Facebook, as we've begun seeing companies offer personalized wine suggestions, meal plans, and even artwork based upon your unique genetic code.
The medical community wants to take things a step further and learn why some people respond better to certain drugs or why others could be at risk of developing hereditary diseases. They're "codifying" the science of medicine -- where DNA serves as the inputs and patient outcomes serve as the outputs -- and correlating between millions of data points to develop more effective drugs and help doctors optimize treatment routines. This could be the early innings of a new genomic era.
But before we get too excited about the possibilities, there's still an 800-pound gorilla in the room: data privacy.
Facebook has been the poster child of data privacy problems lately, with concerns arising about how it shares personal information with outside sources triggering a congressional subpoena. Europe's General Data Protection Regulations (GDPR) have been in the spotlight as well, threatening huge fines of up to 4% of a company's revenue for anyone that doesn't adequately protect consumer data.
The general public has become increasingly hesitant to give their personal information to large corporations. So you would expect to see the same resistance to keep them from sharing DNA, which is just about the most personal information of all, right?
A new, community-owned approach
But perhaps we shouldn't jump so quickly to that conclusion.
What if you weren't giving your genetic information directly to a larger corporation, but sharing it on a community-owned platform that is built upon a blockchain? That could resolve the personal privacy issue, since blockchains are encrypted and give users full control over how and where their information is shared.
And even better, what if you were financially compensated for sharing your DNA data? Could a financial reward incentivize you to help companies develop better drugs or to help doctors treat their patients?
These are exactly the ambitious questions that Luna DNA is setting out to answer. Founded by former executives from Illumina (ILMN 3.24%), Luna's community-owned DNA platform is revolutionizing the field of medicine. And they're asking for your help.
Motley Fool Explorer lead advisor Simon Erickson recently spoke with Luna DNA co-founder and President Dawn Barry. In the following interview, the two discuss the following topics:
- Luna's mission and higher-level objectives
- The role of data privacy and how information is used
- The company's relationship with Illumina
- How you can contribute to Luna's community-owned platform
- The company's larger-scale impact to personalized medicine
- A few things individual investors should be watching
A full transcript is included below.
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Simon Erickson: Hi everyone. Motley Fool Explorer lead advisor Simon Erickson, and I'm joined this afternoon by Dawn Barry [who is the co-founder] and president of Luna DNA. Dawn, thanks very much for joining me this afternoon.
Dawn Barry: Thanks a lot, Simon!
Erickson: Dawn, you've spoken publicly before about the importance of knowing when your health is going to break, and also pointing out that genetic factors play a role in 90% of America's leading causes of death. But Luna is aiming to create the first community-owned database for the greater good of the community and for the future of medical research. That is a lot going on there. But just to start at the higher level, this sounds pretty important.
Can you explain to me what Luna's mission statement entails?
Barry: Sure, and thank you for asking. Our goal is to bring together the health data communities. We look to create the largest human health database to bring together genomic information, clinical medical information, and then your environmental information, as you think about wearables and sensors. And to do so in a manner that's owned by a community of data donors. And I'll explain how that happens.
So our role is to aggregate and organize this data and to put it forward for the benefit of research,. So the current model is being disrupted by breaking down these silos of data and centralization that have prohibited meaningful research, demonstrating transparency with people in data usage, and making sure that we're engaging people responsibly as partners in medical research. So you can almost think about like a co-op-when people get together, the combined value of their data is greater than the sum of its parts. And we believe this model will, obviously, not only break down those silos, but would create a rich, longitudinal, dynamic dataset by which researchers can mine for important medical breakthroughs; so it's really inverting that model of research that would start with researchers' hypothesis generating specimens and really starting more now from the bottom up to create an evergreen asset for research.
Erickson: It's very interesting, because data is definitely emerging as a key theme. That's making, also, a lot of headlines politically because of Facebook and Google and others. But we've typically gotten used to larger corporations either siloing this or using data to monetize in a variety of different ways. But you said that Luna wants to make a community-owned database. Definitely a lot of opportunity to mine data in healthcare now.
But how does this work? Why is it so important for consumers to own the data, and how are you structuring this platform?
Barry: Yeah, we think that obviously there's a lot of trends going on here. And one trend is that people have data, they want to share it for the greater good of research, and there's value in that data. We're seeing that, obviously, more and more. And if there's value in it, then it's inherent to think that people should be able to share from the value created if they share that data. So they should share in the benefits, they should share in the rewards. And so, how we think about that as-we think about data almost as currency, so when people donate their data, they become shareholders in the database asset. And, when proceeds are generated through pursuit of medical research, those proceeds can flow back to the individuals in the form of dividends.
So it's a very transparent, fair, and equitable model. Where when everybody comes together, everybody has the opportunity for benefit.
Erickson: And as medical research, is that R&D for pharmaceutical companies that want to access that for developing new drugs? Is that what you mean?
Barry: Sure. There's for-profit and a non-for-profit research, certainly in the area of drug discovery and development. But also in just generally understanding the genetic underpinnings of disease, really getting to understand what is a health state, how do we measure that, how do we maximize our wellness, and certainly other research opportunities. Our public benefit charter exists to enable research that benefits health and quality of life.
There's multiple options.
Erickson: Perfect. I was going to say, Luna was just founded last year, right, Dawn?
Barry: Correct. In October of '17 we announced.
Erickson: Okay. So very recently, but you've already got quite a bench of talent. You, your CEO Bob Kain, and several of your other executives, looks like you were previously working at Illumina. And I even saw that Illumina is even an investor in Luna now. Other than the fact that Illumina and Luna kind of sound similar in their names...what was the reasoning for founding this company?
Why did you decide to do it now? And then also, what's the relationship with Illumina going forward?
Barry: Sure. So yeah, absolutely. There's a lot of former members of Illumina and I'll speak for myself: a core vision that we all saw -- after years of making the data cheaper, faster, better -- really looking back and saying, you know, what's been the impact of the data? Have we realized the promise of precision medicine and genomically guided healthcare? And we felt an opportunity to really move down a bit into the data space and really answer those questions that have been hindering research in that we haven't had the scope and scale of data sets. We haven't had the diversity and the data sets. The interoperability and standardization of those data have been a problem.
But very importantly we haven't been engaging people as research partners, as I mentioned, with valuable data to share, and that when engaged properly can provide longitudinal lifespan access to even enrich data and real world evidence and that kind of thing. So, after years of working in the genomic space, a lot of us came together to realize this vision of a people-centered, community-based platform for organizing it.
And so the Illumina connections are obviously our pedigree. Illumina Ventures is a sponsor or an investor. We have an individual from Illumina on our advisory board and, other than working in the same space, those are the connections.
Erickson: Sure. And how would people get involved with this community-owned platform?
How would we participate, if we wanted to be a part of this platform that you're building out there that's community-owned?
Barry: Yeah. So we will be opening the platform soon. So, we're in early testing right now. And so, the process would be to visit the website and become a member, review the informed consent. In version one, upload DNA data. So there's about 20 million people that have purchased direct-to-consumer personal DNA testing products. All of them have access to a DNA data file that's probably sitting quite idle.
And so, starting the process of uploading DNA. Then fast-follows on V2's and 3's will include upload of your healthcare system data and then on to your wearables and sensors. So it's a very streamlined, friction-free platform for donating data, and then becoming a shareholder in this database asset.
Erickson: Perfect. And then, Dawn, just to kind of wrap things up, I want to talk a little bit, kind of bigger picture, on how this is going to change the healthcare industry that we operate in today?
It sounds like we're kind of empowering the consumer. This can be very preventative rather than just responsive, and changing a lot of things that were already kind of going through and healthcare. Something you've said before is that we don't know enough about the genome because we don't have enough genomic information! [laughs] We just need to have more data to actually start mining through this.
But we've got the tools now. We know that genomic screening has become much more affordable in the last couple of years. And now we've also got millennials that are already comfortable with personal information being on the internet. They're digitally native. I even saw a data study from NTT that says that 59% of consumers expect their healthcare customer service to be at least as good as their Amazon customer service. I don't know what the other 41% of that study were thinking, but I certainly would agree with that.
Is this a change in the design of healthcare? I mean, are we shifting away from these product-based, blockbuster drugs that have been used to treat chronic conditions for decades, to being more, I guess you'd call it service-focused or patient-focused? That's looking on curing and the relationship with patients over time and individual life.
Bigger-picture, I want to asked you how do you think this is going to change the healthcare reality that we live in America right now?
Barry: I certainly hope that we will get much better at understanding the genetic underpinnings of disease, and understand how the disease manifests, right? Disease is the manifestation of our DNA interacting with our environment, lifestyle, and nutrition. So we'll start to really understand the mechanisms of disease such that we can do a better job of preventing and avoiding disease altogether. At least a better job treating disease.
And then I think we'll progress from that phase to really saying, "What does health mean?" Right now, the definition of health is just the absence of disease. That's not very data-driven. So perhaps we'll understand the underpinnings of wellness. But also understand why people don't get disease. What are the protective mechanisms going on that some people have been able to avoid disease. And then I think, ultimately, we'll go to a state where medicines and maybe even products will start to find us based on our unique biology. And I think that's ultimately the evolution: as products for both treating disease and maximizing wellness get more personalized.
And that will come by truly bringing together this wealth of data. That's our biology. That's our clinical, our past histories. As well as the environment and social determinants of health, right? We've got to understand all of those things before we can start creating a more preventative world.
Erickson: So data will drive a better understanding of diseases, that will lead to more preventative care, and then even more personal -- like you said -- medicines finding us.
Barry: That's the evolution that I would love to see.
Erickson: Perfect. Dawn, one last question for you. Our audience for The Motley Fool is individual investors. May not be experts in genomics, but certainly interested in this space.
What are a couple of things that you would recommend that we keep an eye on as this is evolving?
Barry: Yeah, so please keep an eye on our evolution. We have a wonderful team, a very purpose-driven team that's on a mission that is a very noble cause under the construct of a public benefit corporation. We firmly believe that doing right by people in this model will also do right by society and business. So, I think it's a great model in that respect.
And I think we'll also, as investors, just keep watching the trends in people's interest and appetite for their data and their preferences and how they want to be treated in those models. I think we'll absolutely see trends where people expect companies to be more engaged and transparent in how those institutions are using their data. And I do hope that clinical trial recruitment will ultimately be streamlined by having a rich set of individuals raising their hand ready to participate in research.
And ultimately, through all that, I hope we'll see interventions accelerating in their velocity coming on to the market. So those are just a few things that I look forward to in the future, and I hope investors will be excited about as well.
Erickson: Well, we definitely are excited about this space. Again, Dawn Barry is the co-founder and president of Luna DNA. You can learn more about Luna DNA at their website, which is LunaDNA.com.
Dawn, thank you very much again for the time this afternoon!
Barry: Thank you very much, Simon! I really appreciate the time to spend with you.
Erickson: And thanks for tuning in. Until next time, Fool on.