Navigating cancer: precise science, precise care

In a world where everything seems customizable, why not tailor our medical experiences to our own personal biological makeup? Imagine walking into your doctor’s office, having blood drawn, coming back for a follow-up a week later, and learning about what diseases you’re at risk for, what medications might work best for you, and other personalized health information. Twenty years ago, this might have seemed like a scene from a science fiction movie, but today, it’s some people’s reality. 

Cancer is one disease that benefits greatly from precision healthcare. By tailoring treatments to individual patients based on their unique genetic makeup, lifestyle, and environmental factors, precision healthcare unleashes a wave of benefits for cancer patients. Gone are the days of one-size-fits-all treatments that often fall short in targeting the complexities of this formidable disease. 

Unfortunately, genetic testing and precision healthcare are not accessible to all people. Lack of knowledge, access to specialty doctors, insurance, and finances are all barriers many people face to benefitting from genetic testing and information. Democratizing precision healthcare is crucial for the well-being of the masses but also to drive research and innovation forward. Join us for Tiny Expeditions Season 4, Episode 5, “Navigating cancer: precise science, precise care,” to hear from a cancer researcher on the frontlines of our journey to understand the genetic underpinnings of the disease and a businessman whose company seeks to make cancer more manageable and accessible for all.

Behind the Scenes

Dr. Sara Cooper is no stranger to our podcast. This is the third episode she’s starred in, and we always welcome a chance to chat with her. For this episode, we dove into the topic of genetic risk. As you’ll learn in this episode, cancer genetic risk is the likelihood or probability that an individual may develop cancer based on their genetic makeup. Our genes contain instructions that regulate the growth and behavior of cells in our body. Sometimes, certain gene variations can increase the chances of developing cancer.

Determining cancer risk using genetics often involves analyzing a person’s DNA with specialized tests that look at genetic variants associated with an increased risk of developing certain types of cancer. By studying these genetic markers, healthcare professionals can better understand an individual’s predisposition to cancer and tailor appropriate prevention or treatment strategies.

Understanding cancer genetic risk enables early detection and prevention. If someone is identified as having a higher genetic risk for cancer, they can undergo regular screenings or take preventive measures to catch any signs of cancer at an early stage when it is most treatable.

HudsonAlpha Faculty Investigator Sara Cooper, PhD, and her lab are interested in using genetics and genomics to better understand the individual risk of cancer and how to better treat cancer. In addition to doing groundbreaking research, Dr. Cooper also leads the Information is Power initiative, which offers low-cost genetic screening for residents of Alabama. 

To learn more about the Information is Power initiative, listen to our bonus episode from last season, “Arriving early to the fight against cancer.”

Tiny Expeditions co-hosts Chris and Sarah hanging out with Dr. Cooper in the Tiny Expeditions studio

BioTrain Intern Jordan Phillips joined the Tiny Expeditions team for the recording and production of this episode. Thanks, Jordan!

When we logged onto Zoom to chat with Darren Rowe (pictured right), it immediately felt like catching up with an old friend. He is so passionate about driving healthcare innovation forward and into the hands of everyone who needs it, regardless of their means, knowledge, or circumstances. 

Darren, currently the CEO of healthŌme, is no stranger to the biotechnology industry, having spent much of his career in leadership roles across the pharmaceutical and oncology fields. It was his experiences with these companies that exposed him to the barriers keeping many people from easily navigating their cancer journeys. No matter a person’s wealth or status, the outcome of their cancer is largely dependent on knowing the right people, asking the right questions, and being able to advocate for themselves. As you’ll hear in the episode, this notion sparked the beginnings of what would become healthŌme. 

In many societies today, technology is rapidly advancing and improving the quality of life for those fortunate enough to access it. Many employers, healthcare providers, and life insurance companies recognize the benefits of integrating access to genetic testing and other precision healthcare services into the services they provide their employees and customers. Through cancerŌme, healthŌme is helping life insurance companies break down barriers to health equity and equip individuals with access to a personalized approach to cancer management and advocacy. 

cancerŌme provides individuals with access to genetic screening from day one, regardless of their family or health history. This empowers them to make health and wellness decisions based on their own genetic makeup. Should a cancerŌme user be diagnosed with cancer, they have access to many services to help them have a smooth, successful treatment and recovery journey, from tumor testing and pathology reviews to cancer recovery support and access to educational information. 

To learn more about healthŌme, please visit their website here.

Chris Powell  00:10

Welcome to Tiny Expeditions, Season Four, Episode Five. It’s the penultimate episode for this season. Sarah, we’ve got to make this a good one. So, what are we going to talk about today?

Sarah Sharman  00:20

Today, we’re joined by two amazing guests who are going to discuss precision healthcare with us.

Chris Powell  00:24

Precision healthcare. So, I’m gonna need you to define that. But before we do that, let’s tell the folks who we are. My name is Chris, I’ll be your narrative guide for today.

Sarah Sharman  00:32

And I’m Dr. Sarah Sharman here to help you understand the science.

Chris Powell  00:36

So, Dr. Sharman, what are we talking about with precision care?

Sarah Sharman  00:40

If you’ve listened to Tiny Expeditions before, you know that our genes play a role in health and disease. Scientists and physicians can take that unique genetic information, along with environmental and lifestyle factors, and create a personalized care plan should you become sick or find out you have a disease like cancer. This means everything from specific medications to lifestyle changes that are unique to your situation.

Chris Powell  01:09

So, let’s imagine for a moment that you just received the news that no one ever wants to hear. You’re in the doctor’s office, and you hear the C word.

Jordan Phillips  01:17

It is cancer.

Chris Powell  01:19

And then everything stops.

Chris Powell  01:27

In that moment, your head is spinning. You’re stunned. You just kind of blackout. The doctor is talking to you, but you don’t hear another word that he or she says to you. So, you go home and let it sink in a little bit more. And you inevitably ask the question, well, what’s next? And it’s at this point that we realize everyone’s experience is going to be different. Right? Our bodies are going to process this differently. And how far away from medical care is going to affect our treatment. Our education level, our resources, the insurance plan that we have, it’s all going to affect how we move forward.

Sarah Sharman  02:03

And the reality is that these are only the beginning of the differences. Each cancer is also biologically different. Even if two women have breast cancer, those two breast cancers are going to look exponentially different. Within each individual tumor, there are dozens of cell types that influence how cancer grows and spreads. Then genetically, tumors are all very different. But luckily, science has progressed to the point where we’re learning more and more about the hundreds or thousands of mutations that enable cancer to occur. And this knowledge forms the basis of precision care. So, let’s talk with an expert cancer researcher to learn how the science behind all of this works.

Sara Cooper  02:47

My name is Sara Cooper, I’m one of the faculty members here at HudsonAlpha. My lab is interested in using genetics and genomics to better understand individual risk for cancer as well as how do we treat cancer. We know that depending on the type of cancer anywhere between 5 and 10% of cancer can be explained by genetic changes that we inherit from our parents. So, there’s a variety of great technologies out there that we can use to measure DNA changes and individuals that will tell us about their cancer risk.

Sarah Sharman  03:22

Dr. Cooper’s lab focuses a lot of their efforts on studying genetic risk, which is another major variable in people’s cancer journey. Certain gene changes can increase your risk for cancer, and knowledge of these risk factors can greatly change your medical plan by prompting you to increase screenings or taking other preventive measures.

Sara Cooper  03:41

When we are looking at a family that has a strong family history of cancer, you know, this is something that is sort of intuitive, if you are a breast cancer patient, and your mom and your grandmother and your aunt have all had cancer, you might think, oh, there’s probably something in my genes that are increasing my risk. And going back to the 80s and early 90s, that was a concept that, of course, the idea had been around for a long time. But the technology got to a point where we could actually do what we call genetic mapping. So, at the time, that was pre-whole genome sequencing, but we were able to essentially take families that had a lot of cases of cancer and use tools that would allow us to narrow down to a particular region of the genome that we could attribute to that increased cancer risk. So, depending on the DNA change we’re talking about, some of them have a very big impact on your risk for getting cancer. So, one example of that is the BRCA1 gene. Certain DNA changes in that gene can increase a woman’s or man’s risk for breast cancer. For women, that’s from 1 in 8, which is the population risk, all the way up to a lifetime risk of somewhere around 70%. So, it’s a huge increase in risk.

Chris Powell  05:01

So, the changes in our DNA help tell of risk for certain diseases like cancer. One of the challenges scientists have in identifying these changes are not just seeing that the changes are there. But figuring out is this a meaningful change that can then be used for actionable results.

Sara Cooper  05:19

There’s probably hundreds of genes at this point that have been implicated as potentially relevant for genetic risk for all the different cancers that we know about. We kind of categorize those changes into what we call actionable and non-actionable. So actionable means a DNA change that we can change a recommendation about how you would take care of yourself or get screening based on that change. So, we just talked a little bit about some genes have a big effect on your risk, some genes have a very small effect on your risk. So, there’s probably a lot of genes that have a very small effect on your inherited risk. For those, we wouldn’t necessarily say, oh, you should get a mammogram earlier, or you should get a colonoscopy when you’re 30. Because of that tiny increase in risk, but for the big changes, we would. The number of genes that we know about that are scientifically interesting is very large. But the number of genes that we know about that can impact how you get clinical care is probably in the, depends on who you ask, but in the anywhere from like 30 to 100.

Chris Powell  06:29

Dr. Cooper is responsible for a HudsonAlpha program called Information is Power. If you want to know more about this program, go back to last season, we did an entire special episode on the program. But the program is important because it’s designed to make genetic testing accessible to more people through free and reduced-cost testing. It’s a great program. And it’s all based on this same science, Dr. Cooper said there are hundreds of possible changes in your DNA that could be actionable, and Information is power can do as much as it does just by looking at 32 of those.

Sarah Sharman  07:02

Although Dr. Cooper’s lab wasn’t directly involved in discovering the genes included in the Information is Power test, they do have many other brilliant scientists to thank for the research, including Dr. Mary Claire King, who sparked the flame that became Information is Power.

Sara Cooper  07:17

Some of that early work in breast cancer was done by Mary-Claire King, and in 1995, she published the first paper describing BRCA1 as a gene that’s important for breast cancer risk. She has been a big part of our Information is Power program. She’s the one that sort of made the suggestion/challenge/request that we think about how we could use that kind of information to help people learn about their own risk. And, of course, now the tools for identifying DNA changes are much more widely available and much more affordable. So that’s why programs like Information is Power and other technologies and companies offer the opportunity for people to learn about their risks using genetics, either DNA sequencing or sometimes genotyping. And so those technologies really build on decades of discovery using technologies like Mary-Claire’s and others that developed over the years that allow us to really just identify where in the genome are their DNA changes that are important for our risk.

Sarah Sharman  08:32

So, we’ve established that your genetic information can help inform your risk of getting cancer. But that’s not the end of what you can learn from your genome. Let’s go back to our original scenario. You’ve just found out you have cancer, and you’re wondering what’s next. You’ll probably get some sort of treatment, right? It turns out that genetic information from within your tumor can help direct your treatment plan.

Sara Cooper  08:54

As you sort of alluded to the genetics that we inherit from our parents are an important part of understanding our risk. But some of those same DNA changes as well as other DNA changes that happen during the development of tumors, can be important for identifying the treatments that would work best for an individual. So, this is something that’s sort of been ongoing, the idea of precision oncology, precision medicine, for really decades at this point. I think some of the initial work that was done in breast cancer was actually looking not at DNA changes but protein changes that occur that can be measured on the surface of breast cancer cells. And those were what have sort of defined the different subtypes of breast cancer, so triple negative or ER positive, for example, that are important to directing care. And similarly, DNA changes and genetic changes can be used too. It’s good to think of it a little bit like a molecular fingerprint. Different people have different tumors, different people have different fingerprints. but there are common factors that we can identify in the tumors that can help direct treatment. There was anecdotal evidence and small studies that suggested that that would be beneficial. But now, there’s lots of evidence that having genetic information can help identify patients that can respond or would respond to a certain type of treatment. So, I think some of the more recent results that I’ve seen that are up to 30% of patients can receive genetic information from those tests that would help either direct them to or away from a particular treatment.

Chris Powell  10:40

It’s fascinating to hear the science behind all of this, but how does the science get applied to our everyday lives and practice? Sarah, we’ve talked about this before, but let’s also bring in Jordan. Jordan Phillips is with us. She’s been working here this summer, and she’s on the podcast now. So, Jordan, you are a college student? I’m sure insurance and health care and all of this is probably something that’s not necessarily on your radar. But have you thought about this stuff before?

Jordan Phillips  11:06

I really hadn’t thought about it until hearing everything that Dr. Cooper had to say. But now I’m pretty interested.

Chris Powell  11:12

Sarah, you’ve told us in the past that you have had genetic testing, and you’re a fan of this.

Sarah Sharman  11:17

So, I chose to have genetic testing because I have a family history of cancer. But I actually tried having it done about six years ago. And I just ran into a lot of roadblocks with my insurance. So, when I got to HudsonAlpha, I ended up doing Information is Power last year, and it was a much easier experience.

Chris Powell  11:34

Jordan, if you were to seek this out, like would you know where to start?

Jordan Phillips  11:37

Before hearing about this, I really didn’t even know that it was a thing. So, I probably wouldn’t know where to look.

Chris Powell  11:39

And that’s fascinating because you’re saying you wouldn’t know where to look. And Sarah, you’re saying that you had to seek out a specialized program, which I guess would lead us to the idea that if this were an integrated whole as part of like, say, your life insurance, maybe it might be a little more accessible and easier for people to get to.

Sarah Sharman  12:02

Yeah, I think that’s right. I know, you know, not only accessibility but sometimes cost and just knowledge of something existing, those are all blocks that I think are keeping people from benefiting from this wonderful thing, which is genetic testing.

Jordan Phillips  12:16

So, moving forward, if this is something that I’m interested in, what would I do? Or where would I go?

Chris Powell  12:22

That’s a great question, Jordan. And just so happens, we have another guest that can help us out with that. This is Darren Rowe, the CEO of healthŌme.

Darren Rowe  12:30

My name is Darren Rowe. I’m the CEO of healthŌme. healthŌme is a little over two years old now. We describe ourselves as a precision health management company or precision disease management company. We were established to essentially close the gap in the time that it takes for some of these very promising and somewhat established precision medicine technologies and techniques to get into the hands of people that really need them. Our vision, essentially, is to create an environment where every individual’s health experiences are informed and improved or elevated by their unique biological datasets. And, you know, that’s something that I think, ultimately, is the focus of precision medicine.

Chris Powell  13:21

If you were to try on your own to seek out programs and apply the science behind precision care to your own situation, it’s going to get very complicated very quickly. Well, that’s where companies like healthŌme come in to try to take this science and offer it to us commercially.

Darren Rowe  13:37

The current product we have is focused on cancer, we call it cancerŌme. And essentially, it has three sort of key components. Resources and genetic testing and so on that’s available from day one. So, sort of before cancer, a whole bunch of resources for people that have been diagnosed with cancer, some during cancer, and then some resources, once you get into the sort of the recovery phase of that cancer journey. So before, during, and after is the way we kind of think about it. And then within that, we have things like heritable cancer screening, PGx [pharmacogenomics] testing, you know, counseling and action planning, things like that. If somebody is diagnosed with cancer, we deploy a virtual cancer navigator to help that individual understand the decisions they’re making, maybe help them understand some of the terminology, you know, demystify the diagnosis, help them prepare for consults. Just organize their sort of cancer journey, which, you know, sounds trivial, but if anybody’s listening that has been through it, it can become a full-time and very overwhelming job pretty quickly.

Sarah Sharman  14:48

While I’ve thankfully not had my own cancer journey, I was a support person for my mom as she was going through a cancer diagnosis a few years ago. While she had an amazing medical team, she still had a lot of questions. A product like healthŌme would have helped ease her mind in the weeks after her diagnosis, giving her easy access to learning tools. And because the cancer journey doesn’t end with a diagnosis, healthŌme also offers many amazing services for post-diagnosis that can really be a game changer for cancer patients like my mom.

Darren Rowe  15:19

On top of that, they’re also going to organize a pathology review and medical review. We’re going to organize a very comprehensive genetic testing or sequencing of the tumor. And then we can also use that information to look for relevant clinical trials. There’s a real opportunity in the clinical trial world, you probably know this. When I look at the number of cancer patients in the US that successfully enroll in a clinical trial for cancer, it’s very low, around 4 to 8%. But when I look at the number of trials that are available, there’s a big opportunity, there should be 40 to 50%. Now, of course, not everybody wants to get into a clinical trial is the sort of logistics of that as well. But it certainly should be higher than 4 to 8%. A lot of that is predicated on the fact that clinical trials are very difficult to understand. There’s a kind of perverse incentive for some hospitals not to introduce the trials outside of their own establishments. And one of the biggest reasons we find is that people just don’t have the molecular diagnostic information, the biomarker information that for many of these new trials is sort of the entry point, you know, that’s part of the eligibility criteria. So, we’re able to dramatically improve the likelihood that somebody can find a clinical trial and enroll in there.

Darren Rowe  16:42

And then we take all of that information, and we provide a report that goes back to their local oncologist, as well as we want to make sure that this information is used to essentially change treatment plans potentially. And then when we get into the recovery piece, we’re talking about recurrence monitoring, liquid biopsy, and so on. And again, continued navigation. So that’s essentially what the product looks like. From the insurance perspective, the proposition is that they have a differentiated product, the potential to extend life, the potential to have a much better level of engagement. And that generally maps back to improved persistency, so people don’t lapse their policies as much. If the life insurance company can extend life even by a few months, you know, you’re dealing with a half-a-million dollar cash payment. Deferring that payment from a life insurance company can be worth a lot of money over time. So that’s the proposition from the life insurance perspective. Obviously, from a patient, I’ve now got a product that I can actually use it has real value. And it’s aligned with most policyholders’ desire to avoid or manage cancer and be prepared should they be diagnosed with it. So, there is really good alignment across all the different groups.

Chris Powell  18:05

As Darren continued to tell us about the product from healthŌme, we were curious who the target market is that they were trying to reach.

Darren Rowe  18:12

If we think about, you know, the sort of the perfect avatar for healthŌme or a typical sort of demographic, we’re talking about people probably in their mid-40s and beyond who probably have their own children. They’ve probably experienced some cancer in the family or a friend, and they now are starting to think, you know, am I prepared? Okay, so that’s the first thing. People generally don’t just wake up and decide I’m going to buy cancer insurance. It happens over time, and they start to get older, they start to feel okay, now I’m at that point where I’m starting to feel a little bit vulnerable. And I’ve seen people go through it. So now they’re starting to actively look, and they’ll go online, they’ll get different quotes. And they’re all going to be very similar. When they see the cancerŌme product, it will stand out immediately because there are, through the genetic testing and so on, things that they can immediately access that will help them start to develop their propensity and their risk of developing certain cancers.

Sarah Sharman  19:11

CancerŌme really sounds like a game changer for individuals with cancer. But the science field moves at lightspeed, and there are many other emerging fields outside of genomics. Here’s Darren to discuss future paths healthŌme might take.

Darren Rowe  19:23

You start thinking about some of the really interesting emerging omics sciences. So, we’ve really focused on genomics but there’s really great work being done on the gut biome and proteomics, epigenetics and so on. When I start to think about all the, and Sarah you probably have a better understanding of me, but there’s, I don’t know, probably 60 or 70 different -omics fields that are rapidly emerging. I think eventually, over the next 10, maybe 20 years we’ll have, or rather what we need, is a convergence of these technologies coming together to create one unified understanding of an individual’s overall health situation. I don’t know how that happens. I know there’s work being done, and how do you integrate all these different biological data points into one meaningful presentation that is actionable and has real insight. I guess that’s the challenge.

Chris Powell  20:30

Thank you for joining us for this tiny expedition into precision health care. We have one more episode left for you this season.

Sarah Sharman  20:36

For our finale, we will talk about an innovative project in local schools that will help advance plant science and impact the larger community.

Chris Powell  20:43

Tiny Expeditions is a podcast about genetics, DNA and inheritance from the HudsonAlpha Institute for Biotechnology. We’re a nonprofit research institution in Huntsville, Alabama.

Jordan Phillips  20:52

We’ve got a campus full of scientists doing public research alongside companies developing products and services, all with one aim: to translate genomic discoveries into real-world applications that make for a healthier, more sustainable world. That’s everything from cancer research to agriculture for a changing climate.

Sarah Sharman  21:10

If you find this podcast interesting, please rate, review, like, and subscribe on the podcast app of your choice. And tell someone that you listened to this interesting little story about genetics. Knowledge is better when you share it.

Jordan Phillips  21:21

Thanks for joining us.