Front Line Genomics is a new company with a mission to help bring the benefits of genomics to patients faster. DNA Genotek interviewed Richard Lumb, CEO of Front Line Genomics about the company, its social mission and their upcoming Festival of Genomics in Boston.
A few years ago, in 2008, my father became ill with mesothelioma, a form of cancer commonly caused by exposure to asbestos. He was a welder, so came into contact with asbestos regularly. Most of the studies out there suggest that between one-in-ten and one-in-fifty people who have ongoing exposure to asbestos go on to develop the disease. More recently it’s been found that people with a gene mutation BAP1 have a higher risk of developing mesothelioma. My father died – the vast majority of people who develop mesothelioma don’t get better.
After this happened I wanted to do something that would make a difference. I worked for a few years leading a conference division within a commercial events company, mostly focusing on helping drug developers make better drugs for serious illnesses. I was in that job for 4 years. Financially, we were very successful. But it felt hollow. We chased the money, without much focus on the areas where we could make a difference for patients. So in August 2013 I quit my job and decided to launch a new venture.
The starting point for Front Line Genomics was wondering how the outcomes for people with mesothelioma might have been different if people who had been exposed to the asbestos are screened for the BAP1 mutation. It was too late for my dad, but it got me thinking about how genomic technology is used, and what I could do to influence it.
I spent the next few months developing the idea, speaking to people in the field, working out where we could make a difference. I learned a lot in a short space of time, including some observations about the kind of business we should build.
Firstly, genomics events are too expensive to actually impact the field, and many of the companies that put them together relentlessly spam the people they want to attend. People hate being spammed.
Secondly, we need to bring people together from academia, industry, healthcare, government and the investment community – and that wasn’t happening specifically within genomics at a scale that could really make a difference.
Thirdly, there was a demand for genomics-focused content and information that slots into the gap between generic life sciences industry media, and peer reviewed journals like Nature or Science. I wanted us to generate content that would inspire and engage people to either use genomic information in a more productive way, or get them involved in the first place.
Front Line Genomics has a social mission to deliver the benefits of genomics to patients faster. Everything we do is geared around making that happen. We do it by supporting anyone who is generating or using genomic information. That is, mostly people in universities, drug or diagnostic companies, and within healthcare. In the longer term, we have an objective to support patients or the general public directly, purely in an educational capacity. If we get this right, we’ll play an active, accelerating role to promote the ways in which genomic information is routinely used in a much more widespread way.
When I started this business I spoke to lots of people and ended up making a huge list of things that everyone said needed to be done. It’s a complex picture, and understanding how we could help at Front Line Genomics confused the heck out of me. Then I stumbled over a ‘Genetics in Medicine’ paper published in 2013 by Teri Monolio at the NHGRI, and others. It’s amazing. It really made things much clearer for me, and pulled together everything I’d heard, and more. Teri’s actually involved in the Boston Festival of Genomics in June.
I think the biggest gap exists with the education, knowledge and training of clinicians, and the know-how and will of healthcare organizations to fund and implement what needs to be done.
When we speak to clinicians, we find that their experience of genomics varies dramatically. At one end of the spectrum, there are clinicians who have limited knowledge of genomics. At the other end of scale we have clinicians already treating people in areas like oncology and rare childhood diseases. So a pretty solid version of genomic medicine is already happening, but it’s not accessible to everyone in all areas, and in many cases the treatments don’t exist to deliver a satisfactory outcome.
And there’s another side to it. How do we responsibly put information in front of patients that is potentially distressing for them as individuals? How do we educate people to support patients receiving this information? How do we provide this for the sheer volume of patients that could benefit?
There’s much more to be done. I think that’s where Front Line Genomics can play a role. We can work with other organizations to publicize training events, but there’s another level of activity that’s required to engage people right from the beginning. Front Line Genomics is a media business for anyone who is routinely using genomic information. I think we can play a huge role in engaging and energizing those people. But I also think there’s a role for us in supporting the people whose genomic information is being used. ‘Genome Magazine’ is an example of a fantastic publication in this area. Helping the general public is an area we would like to explore. But we’d like to do it in a way that compliments existing efforts.
This ties in directly to the kind of content we create and distribute on our web portal and in our magazine. We’re not trying to replicate the empirical, peer-reviewed academic work that’s been published. What we are trying to do is to tell the stories behind the research that’s happening, and the companies that are developing genomic technology, and the organizations that are already using genetic information in interesting ways. We also want to tell the stories behind the people, their motivations and why they got involved in the field. Inspiring anyone to become more involved in genomics is an important part of what we do.
All of this is reflected in the Festivals that we’re putting together. We’re trying to create a forum whereby people can be inspired and engaged. But our festivals also need to be commercially and scientifically powerful so that attendees get as much value from attending as possible. We’re creating streams of content that have depth and intellectual rigor and can really help educate attendees so they can take useful information back to their own organizations.
We’re also connecting more people from academia, industry and from health care, putting them under one roof to learn from each other. For a healthcare practitioner to be truly engaged, it’s going to be extremely useful to understand what’s happening at the front end of the continuum from academia, through industry and into healthcare, before they routinely use genomic information in their clinical practice.
Yes, I can’t tell you how important this is to us. We can’t have a social mission like ours, to deliver the benefits of genomics to patients, and then price our product in such as way that very few people can actually attend. Limiting this event to the small number of people who can afford to pay thousands of dollars will not support our social mission. Accessibility is absolutely critical for us.
Our objective is that everybody who is working with genomic information is able to engage with one or more of our products. I’ll come back to our Festival, but we’re developing a business model that means, for the lifetime of our business, that nobody will ever have to pay to access anything on the web portal. We’re developing a publishing model that means, for the lifetime of our business, nobody will ever have to pay to access our magazine. That’s a really important long-term commitment for us to make to the field and it’s something we feel very strongly about.
With our Festivals, we’re pricing at such a rate that we actually lose money on everybody who attends. The reason we’re able to do that, is because we have the support of commercial partners who have bought into what we’re trying to achieve, but also realize that what we’re building could also be a very powerful commercial platform for growing their business. I think in this field more than any other, where the technology is advancing at such a rapid pace, helping our clients grow their business is an absolutely critical part of progress in genomics. The technology is fundamentally important, and there’s a desire from people to keep up with developments.
It’s going to look and feel very different to what people have previously experienced. Firstly, everything is happening in the same room. That’s really important to us because we want to capture the buzz and energy that people have and turn it into a great learning and networking environment. Where people feel motivated to explore, be educated, entertained and to connect.
So when you walk into the Festival, one of the first things you will notice is that all the conference rooms are constructed in that single room. You’ll also notice that we place everyone on the exhibition floor on a level playing field. So whether you’re a giant of genomic technology or a start up business with 6 months under your belt and a team of 3 people, you all have the same booth space. We want people who attend the Festival to engage with new ideas and new technology and organizations that perhaps they are less familiar with.
We also have a large Genome Dome in the center of the exhibition floor, with lots of different networking, educational and social activities happening in that space over the course of the 2 days. Plus a Tech Forum located in the middle of the exhibition floor, which is an open forum for technology companies to talk about what they’re doing. Visually it’s going to look very different when people walk in.
This is one of the few large-scale genomics events in the world that’s making a deliberate and concerted effort to bring people together from different sectors. We have people from healthcare, and universities and industries as well as people from the vendor community, people from the investment community, and people in government. There is a broad range of people to learn from and to meet which will quickly become apparent for anyone who attends.
For the future, one of the things we’re considering is how we take the Festival and use it to engage the general public. We’ve noticed a difference in public perception towards the use of genomic information in the past 12 months. Providing a large physical space for the general public to engage with the concept of genomics, and even their own genomic information, is something we’re actively exploring right now. We’d love to find some partners to help us do it.
DNA Genotek is proud to be exhibiting at the first Festival of Genomics in Boston and looking forward to participating in this innovative approach to information sharing. For more information or to register for the Festival of Genomics in Boston on June 22-23, 2015, click here.