Making pre pregnancy genetic screening relevant for non caucasian groups
Wikihospitals: I’d like to introduce Kunal Kalro, co-founder of Eugene and serial founder of many other start-ups, and also repeated Entrepreneur in Residence. Kunal, welcome to Wikihospitals.
Kunal: Hi! Thank you for having me.
Wikihospitals: Thank you for coming on the show. Now you have a very interesting history Kunal. Can we just start at the beginning?
Wikihospitals: You actually have a science background and you’ve got a degree and then a post-graduate in science from Indiana in America. Can you tell us a bit about that?
Kunal: Yeah, so it’s technically science but it’s really in information systems. So, it’s more of a technology background. It’s a Master of Science in Technology. With that, I aimed to graduate with is actually an accounting and finance so, more for it started off in business and ended up in technology. That’s kind of how I got there.
Kunal’s first attempt at a startup
Wikihospitals: Your first startup was called Kosmovista?
Kunal: It’s like one of the worst things I’ve ever done!
Wikihospitals: That’s fine.
Kunal: So, it was a couple of years after college. I had gone and done consulting work for a couple of years. I hated my life, so I decided I wanted a change and I wanted to work on something that mattered to me. I decided that I wanted to start a company and, I applied to a programme called Start Up Chile in South America.
Kunal: I got in, and I packed up, and I moved. That was my first business, which was called Kosmovista, which is a travel startup. Its one of the worst ideas I’ve ever possibly had. It’s that 20-minute period where daily deals were popular…
Kunal: Kind of like Groupon style deals. I got mine in, in the 19th minute. It was basically travel deals in South America, as actually eco travel deals in South America for that matter. It just didn’t work, for a whole variety of reasons, including the fact that trying to get someone to buy something that’s travel in a different continent on a daily deals model is just ludicrous as a concept.
I learned a lot and I obviously like took all those learnings and started my next company, called Outtrippin, which is also in travel. This time, obviously, one of the biggest things I learned was never start a company by yourself.
I had two co-founders because I had learned my lesson the first time. It’s like, this is a very, very hard and difficult journey that … it’s very, very difficult to do along. You need help. You can’t have all the skills that your business needs. So, yeah, learned that. I ran Outtrippin for a few years actually, then randomly moved to Australia.
I was living in Chile and we were just applying to accelerator programmes everywhere. I applied to one in Melbourne, it’s called AngelCube. My co-founder happened to be here for a wedding, and she was like, “Oh you would love Melbourne, great coffee, great wine.” I’m like, I’m convinced! We just applied to an accelerator programme and we got a call back, had an interview. A week later I was on a flight here.
Wikihospitals: It actually was like a blog that I see people talking about their travel own travel experiences.
Kunal: We actually had a few different products. So, basically you can come to our website, tell us where you’re going to go and what kind of stuff you’re into, and travel experts would pitch you ideas for your trip and, you’d pick your favourite one, and they’d add a full itinerary. But we had a bunch of different products. The core premise of everything was personalised recommendations in travel. We wanted to help people have more real authentic experiences around the world.
Wikihospitals: And then the next two jobs you had were Entrepreneur in Residence at AngelCube and Inspire9?
Kunal: Yes, that’s right. I was Entrepreneur in Residence for couple years, even when I was running Outtrippin at AngelCube and obviously, AngelCube was one of the first accelerator programmes in Melbourne.
Having new entrepreneurs come in, where you actually have all this knowledge that you learned so quickly over the past couple of years and you can kind of share, I thought that was very valuable thing to do. And important.
“So many people helped me along my path that it’s important to help other people along their path too.”
Wikihospitals: Yes, absolutely. Now tell us a little bit about Eugene your latest company.
Kunal: Yeah, so after Outtrippin, I took a couple of years “off” and I put off in quotes, because I did spend a lot of my time doing other things. I wasn’t working a crazy, crazy amount of hours anymore. I wanted to figure out what I wanted to work on next.
And one of the biggest reasons we shut down Outtrippin was because, it was growing in a direction that we didn’t want to. I felt with all the skills that I had learned in the past few years I could do so much more; create much more of an impact. So I started exploring the world of health.
I decided I wanted to do something that matters, not just to me but in the grander scheme of things. Also, I wanted to work in health. I spent some time in India, exploring some of the basics systemic issues, ‘counterfeit medication issues’ and of course ‘untrustworthy doctor issues’ and stuff like that. I spent a lot of time in the developed world.
Discovering that genetic risks for disease vary across different ethnic groups
I started looking at genetics because we don’t have as many basic systemic issues in the Western world as they do in the developing world. Eugene has been an evolution, there’s never been an ‘ah-ha’ moment. I was exploring my own genetics, I sort of did a genetics test, and one of the results and reports that I was looking at basically said; hey we estimate that you have 5 times higher risk of coronary artery disease; which runs in my family so it’s not surprising.
There was also put a disclaimer saying that we can’t actually be sure if this assessment is accurate because we’ve compared you to a Caucasian data set and so the information may not apply to you. And I was thinking to myself, that’s a bit curious I’m ethnically Indian, and there is 1.2 billion of us! Surely, there is some data you can compare me to that might be accurate.
That sparked a bunch of investigations on my end. I started asking researchers, academics, clinical researchers and anyone and everyone in the field that would talk to me, say, “Hey is this a problem” and “isn’t that a bit weird?” I started to realise that is just like a tip of the iceberg, because it goes so much more deeper. The diversity gap does exist, and it goes so much more deeper than just simply, someone’s ability to tell me accurately, what my risk is of certain condition urgencies.
Finding out about the caucasian bias in genetic data sets
Kunal: So, right now 82% of global genome-wide association studies done on data of primarily Caucasian.
Wikihospitals: So, 82% that’s ridiculous!
Kunal: Uh, five years that was 96%.
Kunal: Well, data sets are primarily Caucasian. 17% of that data that is primarily Chinese and Japanese. That leaves 1% for the rest of the world, which includes India, most of Asia, Africa, Latin America. That’s a sizeable population group. That became a pretty clear indicator of how huge this problem is. At that point, I was like, okay what’s the big deal? Is the only thing they can tell are what my risk levels are cause at the end of the day? The research is used to set regulatory standards, but the research data is skewed…
Wikihospitals: Okay, just to explain that to people, so when you get medical treatment it tends to be based on clinical guidelines that are drawn up by medical groups. What you are saying is that treatments are based on data that is skewed toward one race only. So, therefore, the treatments aren’t necessarily going to be effective for large percentages of population being treated.
Kunal: Yeah, and we already know that health inequities exist, and they are pretty clear.
Kunal: Um, a really good example of how this played out was, there is this drug on the market, Plavix, which is for coronary artery disease.
Kunal: It has only been in recent years where they had to issue a disclaimer that if you are of Asian descent or if you’re a pacific Islander you have to get tested for a particular gene that will help you understand whether or not this drug is going to work. That genetic variant exist in 50% of Asian population groups.
Wikihospitals: Wow, so Plavix is an anticoagulant isn’t it? So, it’s probably quite commonly prescribed?
Kunal: Correct! And it was on the market many years before someone figured out that it didn’t work on 50% of people it was being prescribed for.
Wikihospitals: Well that’s terrible.
Kunal: That’s because many Asians have this particular genetic variant that essentially renders this drug useless. Whereas, that genetic variant is a lot less common in Caucasian.
Wikihospitals: I have to say the health industry does know that they are enormous variations among the races. When you see people go through treatments, behind the scenes, we know after theatre for example, many of the people who are slow to recover are Asian. People with red hair feel do more pain. We all know that even just the way people react to treatments varies, and often according to their genetic background but its never been codified or classified or discussed.
Kunal: I’m not out here to tell you that you’re doing everything wrong. The thing is, I totally understand why Doctors would be reticent to talk about race. I can understand why it makes them feel uncomfortable.
Doctors are human, we’re all uncomfortable talking about race in general, especially in the the incredibly charged atmosphere that we currently live in. I get that, and I get that doctors wouldn’t necessarily want to treat patients differently based on their race.
But the reality is, that racial differences do play a role in risk of certain types of diseases. I
f we don’t talk about it, if we don’t address it, then it’s actually going to result in worse health outcomes, for the patients being treated. I understand its uncomfortable, but lots of things in life are uncomfortable; but we still do them.
Wikihospitals: That’s it.
Kunal: Yeah, I think it’s time we start addressing it. So, there is a data gap, obviously…
Wikihospitals: Can I just ask, what was your first exposure to the health industry? Was it starting up Eugene company or is it something else, that’s exposed you to the health industry and made you think, hmm we could do things a bit better?
A family illness sparked a passion for health reform
Kunal: One of the underlying reasons why after Outtrippin I decided I wanted to work in healthcare was that, five years ago my dad suddenly passed away. He had a heart attack and stroke. He was pretty young. It’s not like he wasn’t treated well, it’s just that it seemed ridiculous for it to happen to someone at such an early age. He was 67. That essentially highlighted to me there is a gap in outcomes because, I have friends who’ve got parents that live on until they’re 95, they have had multiple strokes, and they continue on. And yet that was not the case for my dad.
Kunal: That was one of the underlying reasons why I wanted to get into health, because I think that it’s something that is a human right.
Wikihospitals: It’s often the case, that there’s some intersection with the health industry that’s sparks the desire to go into this industry to make things a little bit better. What does Eugene actually do for people? How does it work and what service does it provide?
Kunal: Eugene was designed to help improve diversity in the genetic data area of healthcare research. There is a range of issues why this diversity gap exist, but one of the big ones is that access to health services is relatively inaccessible. That is linked to 4 core fronts, financial, intellectual accessibility of information, emotional support and guidance and cultural sensitives.
Wikihospitals: So your saying the average person has difficulty accessing data on different genetic groups?
Kunal: Access to quality and better health choices, yes. And so, our product is guiding people to make smarter health choices. The entire experience is facilitated through the Eugene app, it’s an at home service, its just a saliva test and all of our products and screenings are clinically actionable and ethical.
Wikihospitals: Your personal data doesn’t get sold in the wrong place?
Kunal: Correct! But also, beyond that. There is a whole range of genetic tests you can do online, it’s like… they’ll tell you if you can be a superhero. Most of that stuff isn’t actionable. So my co-founder, she’s a genetic counsellor for 10 years. The emphasis is, we basically only create products that have been clinically validated to a strong degree.
Wikihospitals: And so, given that you have just explained that the overwhelming amount of genetic data is like from Caucasian people, how do you help people who are not from that background?
Kunal: So, let me explain, our first product is a pre-pregnancy check-up for partners to see if they are carrying any genetic diseases to pass on to their children, so this is carrier screening.
Kunal: If you look at the guidelines that are set up by a lot of the regulatory bodies then look for very, a very short list of conditions. These conditions primarily affect Caucasians. What we are looking at is an expanded carrier screening service, which covers a much wider range of genetic tests…
Kunal: Diseases that could be passed on, it covers much wider demographics as well.
Wikihospitals: I can see straight away that there will be a lot of people in Australia and around the world that will be very interested in that.
Kunal: That’s one of the big reasons why we’re starting with that as our first product. So the conditions that we cover are, they’re not like not Alzheimer’s or, it’s late onset disease.
Wikihospitals: They are conditions that damage people when they are very young?
Kunal: Yes, this can be an incredibly helpful resource, we believe. And I believe that in the next five to ten years this will be as common as taking folic acid. It’s our role to make the stuff accessible, easy to understand. And adding simplicity and warmth to a healthcare experience.
Examples of genetic diseases specific to certain ethnic groups
Wikihospitals: Can you mention one or two diseases that aren’t normally included in genetic testing that are included in yours? I think Jewish groups have a higher level of a neurological disorder.
Kunal: In Jewish communities Tay-Sachs is common.
Wikihospitals: Afro-American groups?
Kunal: There is sickle cell disease.
Wikihospitals: So do you test for those sorts of things?
Kunal: Yes, in fact we do.
Wikihospitals: I imagine, people would not even know that if they had an ordinary test in Australia, that those things would not be tested for?
Kunal: Yeah, absolutely not.
Wikihospitals: Wow, that’s huge. Have you gone to the ethic communities?
Kunal: This is one of the things that we are working on right now. So, I should preface this right now by saying, our products are not technically live yet and they won’t be …
Kunal: Until we get regulatory authority …
Wikihospitals: Sure. But once communities realise, that if they have the standard genetic test, they risk not finding out whether they are at risk of giving their child a disease that is prevalent in their particular community, they will not be satisfied. You will change the whole genetic testing industry.
Kunal: We hope so.
Wikihospitals: Wow, that’s a big issue for mom’s and for families.
Kunal: Absolutely, it’s a big issue for societies because this has direct impact on final health outcomes.
Wikihospitals: And it’s been really good for you to explain all that here, because that wasn’t clear in your website.
Kunal: Yeah, that’s because we are not a live service yet. We will have a lot more information online soon. We want to help people understand all of these things. A big role for us to play, is to interface between this really complex subject of genetics, so that more people can engage with their data in a much more thoughtful and meaningful way than they currently do.
Wikihospitals: Well I think one in four people in Australia were born overseas and I believe we have the second biggest Greek population in the world outside of Grease. That’s a huge non-Caucasian group of people in Australia who would be enormously interested in this product.
Kunal: To be honest, we’ve got a precedent of this product actually being pretty well embedded in society. You can look at Israel and the Jewish community both here and abroad. There are Rabbi’s in the U.S. and New York that will not marry you unless you have had carrier screening. Whatever the results are, that’s not relevant, it’s about having the information so you can make choices for yourself that are more considered.
Israel actually has 60 to 70,000 carrier screenings happening every year, and it’s a country of 8 million people. We’ve seen how this has really come embedded in society and I think that as we move forward, we have to play a role in making sure this sort of technology disseminates to everyone and not just a privileged few.
Wikihospitals: Okay, so when is your product going to become live?
Kunal: I can’t put a precise date on it but early next year.
Wikihospitals: Well, we’re at the end of 2017.
Kunal: So, its soon. Well we’ve been working on this for a while.
Wikihospitals: Have you spoken to anybody in different ethnic communities about this screening and got their feedback?
Kunal: The way that we are engaging communities is by actually being part of them. I am ethnically Indian, so I engage the Indian community. We have a big challenge engaging local communities and ethnic communities with healthcare. And one of the biggest reasons why healthcare industry had such a hard time actually doing it, is because there is a severe lack of trust. And that lack of trust there is reasons, many reasons for it.
Wikihospitals: What about some of the reasons, as a matter of interest?
Kunal: The healthcare industry for a long time marginalised ethnic groups. We can look at how the indigenous groups population have been treated here by the government, by the healthcare industry, by pretty much most institutional organisations that exist in Australia. So, its not surprising when they have a great degree of mistrust. The way that we see we can bridge this gap is not by going in and telling them what is good for them is actually, by going to communities that we are already members of and engaging with them.
Wikihospitals: So you’ll contact people from those communities and get them to go out and talk to people and explain things?
Working with local communities
Kunal: I can go and talk to an Indian family and I know exactly what words to never say because it will trigger specific reactions that most people wouldn’t actually know, like that would actually be a thing. There is a cultural barrier that needs to be overcome. This is incredibly personal to most people. Having a family is a very personal choice.
Kunal: And so we need to make sure we are engaging with them in a way that they connect and resonate with. I know what I can say to them that is going to like actually like help bridge this gap. But I know that for Indian communities, I won’t know that for Arab communities, I won’t know that with indigenous communities, or with Jewish communities.
My co-founder is Jewish, so basically we’re working towards engaging local communities in that way. And as we grow we will engage other communities by actually having people being the advocates and champions of those communities.
Wikihospitals: So. You pull in together, your science background, about statistics really, an analysis, and science is about logic ultimately, and then your multicultural background and then because its personal when people get involved in a health start up, there is usually a personal trigger, your dad dying at a young age and now you’re bringing all of your skills to produce an incredibly well built product for anybody.
Kunal: This is a product that adds affordability, intellectual accessibilities, and emotional support and cultural sensitivity.
Wikihospitals: I noticed on your blog a post that was a bit of a shot at people being a shallow about genetics, and treating it as though it is a bit of a toy. Your point was things are complicated.
Wikihospitals: Sounds as though you’ve got a fairly sensible philosophy underneath all of the science.
Kunal: Thank you.
Wikihospitals: The future, where do you see yourself in five years?
Kunal: Yes, great question. From the perspective of the product, we see ourselves in the minds and pockets of people everywhere, both here and abroad. We really want to help people engage with their genetics in a much more thoughtful, meaningful way and ethical way. We see the importance that genetics is going to play in health in the future, and we want to help everyone engage with that. That’s where we see ourselves from a product standpoint. From a research standpoint, well we want to help reduce the diversity gap and help in healthcare research, but this not something we can take on alone.
Obviously, this is a huge global problem. The role that I can see us play is to be a catalyst. Yes we can use our data to advance research but we can also build coalitions with both private and public organisations, to help advance this global issue together.
Which leads me to my final place, in terms of the role we can play in. Because we are helping communities and individuals engage with their genetics, we can also play a role in advancing the public discourse around how these technologies are applied and regulated over the next decade or two. Because this stuff affects us in such personal ways, we need to be able to engage with governments, with regulatory bodies and as people in a way that can move the discussion forward, so that we can make good and ethical choices not just for ourselves but for all of society. We hope to play a role in helping advance that discussion.
Wikihospitals: Kunal thank you very much for talking with Wikihospitals, we really enjoyed your very interesting comments, and this sounds like a wonderful product. I look forward to this coming out next year, please let us know when it’s being launched.
Kunal: Yeah will do. Thank you very much for having me.
Wikihospitals: Thank you.
© Wikihospitals November 2017