by Ditsa Keren

Become a Research Participant and Gain Insights About Your DNA With Sano Genetics

Become a Research Participant and Gain Insights About Your DNA With Sano Genetics

Sano Genetics is a user-centric genetic data-sharing platform that facilitates a direct connection between users and research institutions. It allows researchers to quickly recruit research participants while appealing to the latter with personalized health insights. In this fascinating talk, Charlotte Guzzo, Co-founder and COO at Sano Genetics provides a close-up perspective of the company’s work and values, outlining an immense contribution to research, science, and humanity.

Please describe the story behind the company: What sparked the idea, and how has it evolved so far?

We founded Sano Genetics about four years ago. My two co-founders and I were doing our PhDs at the University of Cambridge in different areas of genetics. We quickly realized that recruiting patients into research and the logistics of running research was a lot more complicated than we initially thought.

We also recognized that the experience for patients participating in research was quite poor because they often have to come to hospitals and be proactive with all sorts of tasks they need to perform. Research participants very rarely hear back from their researchers, and when they do, they get very basic feedback, so in terms of actionable insights, there’s nothing really in it for them.

Sano Genetics has set out to change the research experience because we genuinely believe that precision medicine is the future. Progress will only be made when we start looking at people’s genetic background, their medical history, and what makes them react to a specific treatment or contract a specific disease on an individual level.

This has never been clearer than with COVID. We’re seeing that some people have no symptoms at all while others end up developing long COVID or even dying of it. The question of why some people go on to develop a full-blown expression of a disease, whereas others don’t, is a really important one to consider.

To give a bit more context, when we started looking into the problem, we realized that it was a huge issue, generally speaking, in the research industry. The average cost of recruiting for a clinical trial is 11 Million Dollars, and that’s just for recruiting patients into the trial, not even considering the cost of the actual trial.

A large majority of clinical trials also get delayed or even canceled, because of the inability to find the right patients or because the patients don’t stay engaged throughout the research process.

To us, as scientists, it was a wake-up call. We can do all the science that we want, but if it takes 20 years and millions of dollars to bring a drug into the market, effectively people are missing out on opportunities to get the right treatment.

That was the passion that drove us to create Sano Genetics. We built a platform that enables patients with specific conditions to find research projects or clinical trials all over the world that correspond to their condition and genetic data.

In precision medicine, the research experience is very personalized. We make it valuable for participants by giving them personalized insights into their respective conditions through using their genetic data and any other aspects of their health information that they choose to securely share with us. We make the whole experience of participating in research personalized and insightful – giving people full control over which data they choose to share and the opportunity to withdraw it at any time.

We have built a patient interface to enable people to get more out of their data and participate in research, and have partnered with multiple institutions for this purpose, including Genomics England, one of the largest biobank in the world. Rather than just being contacted randomly by email, we give them visibility about what research is out there and how they can participate.

In a nutshell, we bring research to relevant patients and personalize the experience, effectively getting faster enrollment and prolonged engagement with the trial, which means reduced delays and lowered costs for finding treatments.

Joining Sano Genetics as a research participant:

Please describe the story behind the company: What sparked the idea, and how has it evolved so far?

How can DNA testing help promote preventative healthcare?

That’s a really interesting question. I think typically, medicine has always been reactive. You only started looking at the problem when you had a symptom of a disease, and then you went to find treatments or drugs to target the problem.

In many cases, it’s really effective. It would be wrong to deny that there has been huge progress made in medicine in the past decades. But increasingly, we are understanding that when a person starts showing symptoms or developing a pathology, the disease has had time to spread and possibly make irreversible damage. They are already at a stage in the development of the disease where it becomes harder to treat. This is particularly true for cancer, but also other conditions.

Two decades ago, we wouldn’t even dream of predicting that someone is going to develop Parkinson’s disease or multiple sclerosis, for example. But now, we are starting to have visibility of what differentiates people who develop a disease from people who don’t.

If we understand genetic patterns, we can identify individuals before they show any symptoms, in which case, we would have far more options at our disposal to begin treatment or potentially prevent the disease from happening altogether. That’s the power of precision medicine.

Below is a sample report from Sano Genetics:

How can DNA testing help promote preventative healthcare?

If you know a person’s predisposition to disease and the deficiencies they have, doesn’t that solve the equation?

It can, is the powerful answer, but it’s not that simple.

When we first managed to sequence the human genome, we thought that this would be the answer to everything. Increasingly, we are realizing it’s more complex than that. There is the genome, and there is gene expression. Why is a specific gene more expressed in some people than others? These are big complex questions. In some conditions particularly, we are finding the role of the microbiome coming into play.

Genes and genetics are not the sole answer to it, but it is a step in the right direction. In genetics, it’s very rare to have a signal that is 100%, i.e. If you have that gene, you’re going to have this disease. You only see that in purely genetic diseases that are generally simpler to understand but harder to treat. Complex diseases are more difficult to understand and there are many elements that come into play for them to happen.

It might be the case that if you have a certain gene, you’d have an increased chance of getting that disease, but it doesn’t necessarily mean you will have it. Some people do, others don’t. Precision medicine aims to understand why that is. Is there a lifestyle factor? Are there other aspects that differentiate people with this gene?

Is this why it hasn’t been standardized yet?

Yes, I think it’s definitely a reason why. I’ve been hearing about genetics for most of my adult life so it seems to me like it’s been around for such a long time. But when you think about it, the human genome was only sequenced quite recently in the history of things. We are only just beginning to truly understand how it works and what other mechanisms come into play. Some wonderful things are happening and research is growing at a very fast pace.

You see new assays and new ways of querying the data being developed every day. During my Ph.D., for example, I was using a technology called single-cell RNA sequencing, which allows you to see exactly which genes are being expressed in every single cell. That’s fascinating because it answers questions that we never even thought of asking 20 years ago.

I think the bigger reason why these things are not being implemented is that they are difficult to scale. We aspire to resolve that, but we’re not yet at a stage where we could whole-genome sequence the entire population and get tangible insights out of it.

However, when it comes to research, it’s super important to have that level of resolution to understand why a drug is working in some people and not in others, and to be able to find the right patients quickly to answer these questions.

This is where Sano Genetics comes in, bringing these opportunities to patients by showing them relevant research they can take part in based on their disease and their genetics. At the same time, we accelerate the pace of conducting the research.

Put simply, Sano Genetics mediates between researchers and research participants. Is that correct?

We do a bit more than mediation because we have developed our own at-home data collection kits. We support research institutions in sequencing people or collecting other types of assay that they may want to look into. That is still something that research institutions are not all equipped to do.

Having to ask people to come to hospitals to get sequenced is also a big issue, especially for patients that have conditions that affect their mobility, or for whom it’s quite difficult to go to a hospital to do that.

We work as the mediator, but we also have logistics in place to do at-home DNA sequencing and at-home data collection. We support the logistics to make research happen faster and to make it more convenient and easier for individuals to take part and to learn things from it.

In the future, we would like to be doing our own research as well but, at the moment, it’s a matter of finding this right fit between institutions and patients.

Does this mean anyone anywhere can participate in research digitally?

It really depends on the research project. We have some projects that are entirely digital where if you have been diagnosed, you just answer a few questions about your symptoms, progression of the disease, and comorbidities.

Some projects are a bit more of a blend of digital and at-home data collection. You would take a DNA test from home and answer some questions.

Finally, we have clinical trials that involve going to the research site, being allocated to either a treatment group or placebo group, and taking treatment while being followed by doctors.

So we have the entire spectrum of research types. The way we see it is that it’s up to the individual to decide what they’re comfortable with while taking into consideration their doctors’ opinion. When they do take part in a clinical trial, they’re medically assessed.

It depends on the kind of condition you have, where you are in your process, and what you want to get out of this. Some people just want to learn more about their condition and progress research from home, whereas others are looking for a treatment option and a clinical trial to take part in.

 

How does Sano Genetic approach data privacy?

From the onset when we created the platform, we were very clear in our mind that the data should belong to the patient. So for us, data ownership is very clear. If you create a profile on our platform, that data belongs to you, not to us.

We operate a dynamic constant model for research so of course, once you are on the platform, the data belongs to you. We would never share the data without asking for consent.

Once you’ve decided to participate in the study, you have to give consent to share your data with that specific institution. We explain very clearly on our website what that means. It means that the institution will have access to your DNA or your medical file to do research. It’s in the hands of the participant to decide whether or not they agree.

Experiences with other genetic companies are much less transparent. They ask you if you’re happy to participate in research, and if you click Yes, they send your data to whoever they want.

At Sano Genetics, we ask for consent at the study level. We never just have a blanket shell on the data. We ask you whether or not you want to share your data with that specific institution in the context of that specific study.

In terms of how we protect the data, we use the highest encryption standards. The data is fully encrypted and when we do share it for a study, with the patient’s consent, it’s fully anonymized.

Of course, if you go for a clinical trial, then the data is no longer anonymized because you’re going as a participant. We make sure that this is very clear to the patient, and that they provide consent.

How do you envision the future of your industry?

I’m excited about the future of this industry because I feel like the promise of precision medicine is a game-changer in medical care. You see a lot of progress being made in medicine. Even in my lifetime, a lot of things that you would die of when I was a child, now have much higher survival rates.

It’s fantastic to see that, but I feel like it will be hard from where we are today to have a massive step up in terms of eradicating some disease that we currently don’t have a cure for unless we look at the individual level.

There are a lot of promising treatment options that are starting to come up in the field of genetics but this can only happen if precision medicine becomes the norm. I feel very passionate about making that happen.

In terms of the future of the industry, I envision a world in which everyone can be involved in research and science. It’s no longer the case that research is only being done by scientists. We will all have something to do with it, we will all, in our lifetime, experience some medical issues or have family members who do. So for me, a world in which taking part in research is the norm is really exciting.

I also envision a world in which medicine is no longer based on just demographics. Currently, you get prescribed a test because you’re female and over 50 or because you’re a male and over 60. Instead, it would be game-changing to do this because there is a specific indication that you are at higher risk of developing a disease, regardless of your age or sex. To me, it is really exciting to imagine a world in which this becomes a reality and that’s what we’re trying to build at Sano Genetics.

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About Author
Ditsa Keren
Ditsa Keren

Ditsa Keren is a technology blogger and entrepreneur with a strong passion for biology, ecology and the environment. In recent years, Ditsa has been specializing in technical and scientific writing, covering topics like biotechnology, algae cultivation, nutrition, and women's health.

Ditsa Keren is a technology blogger and entrepreneur with a strong passion for biology, ecology and the environment. In recent years, Ditsa has been specializing in technical and scientific writing, covering topics like biotechnology, algae cultivation, nutrition, and women's health.