"GeneAdviser is an online marketplace for clinical genetic testing. As a social enterprise, our mission is to make genetic testing more accessible for patients with rare diseases by making it easier for doctors to find and order test from top laboratories online."
Hi Jelena and welcome to our inspiring startup talks with entrepreneurs! Firstly, can you please tell us a bit about yourself?
I’m the CEO of GeneAdviser, an online marketplace for genetic testing. As a social enterprise, our mission is to make genetic testing more accessible for patients with rare diseases.
By training, I’m a geneticist, but I definitely have an entrepreneurial streak! My first business was a fire-twirling and circus performance group at university. I’ve also been starting and running various volunteer groups for as long as I can remember. I find it exciting to promote different causes and help organisations grow.
I did my PhD at Cambridge University in genomics and computational biology, followed by a postdoc position researching the epigenetics of a rare disease. I chose to study genetics because it is the fundamental language describing how life is built, so it is exciting scientifically as well as being a very powerful tool. I find all life fascinating, and it’s a pleasure to be in a rapidly developing field where there is so much to discover.
Through my work, I met lots of people working in rare diseases and learned a lot about the challenges faced by patients and carers of people with rare genetic disorders.
With a colleague, I founded the Cambridge Rare Disease Network to bring together people who research, support and advocate for people with rare genetic conditions. The field of genomic and genetic testing shows so much potential. It’s vital that we share knowledge and work together to turn these scientific advances into results for patients.
Can you share a few words about GeneAdviser?
On average it takes six years for patients with rare diseases to be diagnosed, with trips to maybe eight different doctors and specialists. We want to make it easier for patients and their doctors to find answers by making it easier to find the right test.
GeneAdviser is a simple, secure, online catalogue of genetic tests. Doctors will be able to find, order and pay for tests online with a user-friendly shopfront and secure transfer of payments and patient data.
We’re working in partnership with world-renowned genetic testing laboratories to develop the platform so doctors can be confident that any tests they order through us will be accurate and reliable.
The system will be powerful and flexible. A specialist might already know what they want to test, so we’ll make it easy for them to quickly find it, order and pay.
On the other hand, a GP might never have seen a patient with a rare disease before, so we’ll provide extra information to guide them through the process and help them make a decision. For example, we’re designing a five-star rating system which ranks tests based on quality metrics. These include lab accreditation, the sensitivity of the test, how long a lab has been doing a particular test and how often they perform it. This establishes a quality ranking that doctors can use to compare different tests in a consistent way.
Our aim is to expand the pool of clinicians who feel confident ordering genetic tests. This technology has lots of potential in paediatrics, neurology and cancer medicine.
Genetic testing is still quite a new field: can you tell us how you came up with this idea?
My postdoc work at Cambridge focused on the disease mechanisms of a rare genetic disorder - Dubowitz syndrome. While working on it, I also found out more about the rare disease community, and met people with other rare diseases. Through them I learned about the long and frustrating journey for people with a rare disease to get an explanation for their symptoms.
While each disease might affect only a handful of people, there are thousands of different rare genetic disorders, so we’re talking about 3.5 million people just in the UK who will be affected by one of these conditions.
I started to think about how we can reduce that time to diagnosis and help patients get answers more quickly. Patients told us that it’s hard for their doctors to find the right test - they need to call around different laboratories, maybe fax in their order - and many doctors just don’t know where to start.
We want to reduce those barriers to access by making information about different tests freely available online and by making it really easy for a doctor to find and order the right tests for their patient.
My friend and colleague Robert Stojnic, who was working in a similar field, was also looking to start a business, so we joined forces to set up GeneAdviser. He comes from a really strong technical background: in fact, he was one of the developers behind Wikipedia. He’s building the platform for us now, getting ready for a September launch.
We’re lucky to be able to tap into a strong network of rare disease organisations in Europe, such as Orphanet and EURORDIS. We hope that our service will complement the support they offer for people with genetic disorders.
There are also similar companies in the United States but their approach is a bit different, in part due to regulatory differences between the USA and Europe.
Who is GeneAdviser targeted at and how exactly does it work?
GeneAdviser’s ultimate aim is to help patients. In particular, we want to help people with rare genetic diseases, but genetic testing is also useful in a number of other applications including cancer prevention and treatment.
However, to ensure that patients get the best care, GeneAdviser works through doctors and clinics, so that patients get solid medical advice and treatment options.
Other companies overseas offer testing directly to patients, but we think genetic testing should take place in a medical setting with appropriate genetic counselling and patient support.
Let me give you an example of how GeneAdviser can help.
Imagine a young boy presents at a clinic. His mum is worried that he’s been slower than other children to sit, stand, walk and seems to have trouble talking.
The doctor notes that he seems to show a lot of the symptoms of autism, or perhaps ADHD. But the doctor also notices that the child has physical symptoms - flat feet, an elongated face - which could indicate a genetic disease.
With GeneAdviser, the doctor could hop onto our site and choose the child’s symptoms (or in genetic speak, his phenotype). Our system might suggest a test for Fragile X and a list of accredited labs which offer this test.
Once they’ve ordered and paid for the test online, the doctor would send a cheek swab sample off to the lab. The lab would analyse his DNA and send back a report explaining their findings and recommending actions.
Say the boy does have Fragile X: with this information the doctor can recommend certain treatments and can even help to predict and prevent further symptoms. For example, patients with Fragile X sometimes experience seizures, so now the child’s parents can be forewarned and learn how to protect him in a seizure.
They can join a patient support group to connect with other families and learn more about the condition. They might be able to join clinical trials or participate in research to help find new treatments for Fragile X.
And, importantly, other family members can be screened for similar mutations. As an inherited disease, Fragile X could affect future children, or other family members could be carrying a less severe mutation which might manifest in future generations.
So you can see that a diagnosis gives the family lots of information which can help them to care for their child. And by working through doctors, patients and their families get support and treatment advice.
What were the hurdles that you have come across in the process of building GeneAdviser and how did you overcome them?
There are always a number of hurdles in building any new business. We are a small team with an ambitious project, and in order to make it happen, we had to go out of our specialist area of genetics, and suddenly learn about everything from VAT law to recruitment and fundraising.
The key to overcoming any hurdles is to have a driven team that works well together. In the words of Jonathan Milner, one of our mentors, “the right team will be able to walk through walls”. And you really need that kind of cohesion, because walls are something you will inevitably encounter.
We’ve had to work a lot to get to know regulatory frameworks in different countries and make sure we comply with them. We also have a heavy focus on data security, because we are handling medically sensitive data.
Our servers are in a building that can only be accessed after biometric scanning, and the data is encrypted, with the encryption keys stored in special hardware that self-destructs if tampered with - proper spy movie style!
Can you tell us how did you go about securing the funds to build your social enterprise?
We have been lucky to be based in Cambridge, where there is a lot of support for start-up businesses. We’ve been supported by two different organisations: Social Incubator East, which is a social enterprise incubator; and Accelerate Cambridge, which is a business accelerator associated with the Judge Business School at Cambridge University.
Both organisations have given us some funding, with Accelerate Cambridge in particular supporting us with a start-up grant and internship bursaries. We have also benefited tremendously from the training and mentoring provided by these organisations.
My co-founder Robert and I also invested some money ourselves at the outset.
This financial support has enabled us to build the initial prototype of the website without taking on investment too early. We will be seeking seed funding in October, after our initial website launch.
What is your view on importance of competitor's environment in social enterprise market, has it had any impact on your social enterprise?
Getting to know your industry in-depth is really essential, particularly as a startup. You need to be aware of technology trends coming in, and what else is currently available. From there you identify the gaps and try and build something new and valuable, that other organisations are not focusing on.
This kind of understanding is essential for companies in general and for developing a long-term growth strategy, but it is particularly key for startups where your time and resources are by definition extremely limited. You can’t afford to waste resources solving problems that someone else has already solved.
How do you make sure that you offer best service to your customers?
Our process is to work closely with potential customers, to try and co-design a system that really works for them and removes some of the frustration that they experience in their day to day work.
In the case of doctors, this is by saving them time and making the tests easy to find and refer. Some of the passionate doctors we spoke to had spent weeks phoning up different labs and compiling a list of existing tests based on this research
We hope to provide them with tools to find and choose the tests faster, enabling them to provide the sort of excellent diagnostics for their patients that they already care about a lot, and want to be providing.
What is the key to your success?
If you find the kind of work that you love and that keeps you awake at night, I think that in itself is enough. Success is a function of a lot of things - luck, resources, being in the right place at the right time. Of course some form of success is the end goal, but actually, I love the process.
What you’d consider success is also a very personal thing, that will vary a lot for different people. So I think it’s up to each of us to define what success means for us, so the key to it will be different too.
What do you think is the most important characteristics for a successful social enterprise in your field?
I think that the ability to listen and identify what the real problems and barriers are is essential.
For tech people, it’s easy for us to get excited about particular types of technology and its features, but to be successful as a social enterprise, you need to be very people-focused and make sure that what you’re solving is a genuine need.
You also need to make sure that the solution you’re proposing fits in with the existing process and how people currently work, while doing something useful at the same time.
Where do you see GeneAdviser in 5 years time?
We want to offer this service to people all over the world for all sorts of genetic conditions.
Genomic medicine is an incredibly exciting field. This is a really promising time - I think we will see genomics transform 21st century medicine.
Besides rare disease testing, we think there’s promise in other disease areas, such as non-invasive prenatal testing, and precision medicine for treating different kinds of cancers. All you need is a drop of blood.
We’re already talking with potential lab partners in Europe. The more labs we sign on, the better. We want to create a comprehensive network of European labs and encourage cooperation to reduce costs across the board.
From there, we are reaching out to clinicians across Europe. At the moment, we’re mostly talking to clinical geneticists and paediatricians, as the rare disease field is of most interest to them.
Beyond that, we know that some clinics in China, India and Australia are already ordering genetic tests from the UK, so we see opportunities to make overseas testing more accessible and flexible for patients in other countries. It would also be really great to offer genetic testing services to people in Africa and other parts of the developing world.
All people born with rare diseases deserve the chance to be diagnosed and treated, and by reducing the cost of testing and the barriers to access, GeneAdviser can help make that a reality.
Thanks Jelena for sharing your inspiring social entrepreneurial journey with us. We wish you great success!
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Sindhu Chandrasekaran is a very confident and enthusiastic journalist who loves to take up responsibilities and challenges. My quest for learning and keeping myself abreast of any developments in the field have been a drive to experiment new things. Both, the interest that I have in meeting new people, make connections and flare for writing that I am blessed with has moulded me into what I am today. You can follow Sindhu on Twitter or connect with her on LinkedIn.