We live in an era where we are relentlessly reminded that our data is being misused. So much so, in fact, that we are completely fatigued by it, switching off to the constant news flow that tells us just how bad it has got – just when we thought it could not get worse.
To cut through the noise, Nebula Genomics makes sure to go straight to the jugular, telling people immediately: "Corporations are making billions off your health data without your permission." The company aims to create a community of health data sharing, with express consent from the individual, which rewards users with insights into their health and allows them to contribute to a community dedicated to using it for lifechanging research.
DATAx spoke with Dennis Grishin, co-founder of Nebula Genomics, about how a greater understanding of genome data can change patient's life, empower them and turn the healthcare industry on its head.
"Nebula Genomics offers consumers and patients affordable personal genome sequencing and empowers them to control access to their personal genomic data," Grishin tells us. "At the same time, we want to give researchers access to a large network of individuals for on-demand genomic data generation, access and analysis, which will help study human genetics and develop new therapies."
He explains that Nebula Genomics is currently in the process of developing multiple cryptographic techniques, with the aim of protecting individuals' personal genomic data and address privacy concerns.
"First, we encrypt genomic data with multiple keys that are held by multiple independent entities," Grishin says. "This protects data against misuse, hacking and government access.
"Second, we use blockchain technology to give individuals irrevocable ownership of their personal genomic data and enable transparent and controllable data sharing, he adds.
"Third, we are creating secure computing environments within which genomic data can be analyzed while it remains protected. This will be supported by a homomorphic data encryption scheme that enables execution of some computations on encrypted data."
The company also offers pharma companies an end-to-end genomics as-a-service.
"Researchers can query our network, identify individuals of interest, pay for genomic data generation, and finally access and analyze the data," he adds. "Importantly, this model shifts the sequencing costs to pharma and biotech companies. We expect that combined with our privacy protection mechanisms, it will attract many people to join our network which will become a very valuable resource for researchers and provide them with access to a patient/consumer-centric platform for on-demand data generation and/or trial recruiting."
After 2018 quickly descended into a year that will go down in history as one defined by data scandal after data scandal – and data does not get much more personal than your genomic data – did people's attitudes toward sharing their genomic data change?
"Increasing popularity of personal genomics that has resulted in growing genomic databases which have attracted the interest of researchers and law enforcement," Grishin notes.
"Unfortunately, these datasets are being accessed and monetized without the consent of the people who the data actually belongs. This leads to mounting privacy concerns which are deterring many people from using personal genomics services. For example, 23andMe recently reported a slowdown in sales due to privacy concerns."
Sheer curiosity aside, the drive for people to see a full picture of their specific genomics comes down to discovering a greater understanding of their health; in particular, what the future holds. Grishin explains where Nebula Genomics comes into this.
"There are three areas," he says. "First, people can learn about disease risks and take preventive measures. For example, if a person learns they have an increased risk for a certain type of cancer, regular screenings can help detect the cancer early if it appears.
"Second, people can learn whether they are a carrier of a severe genetic disease that might manifest itself in their children. This can be avoided if both prospective parents sequence their genomes before conception. Third, personal genome sequencing can help identify increased risks of adverse reactions to certain drugs."
As we delve into a deeper understanding of the human body and healthcare technology evolves so does the relationship of physician and patient. We want to know whether this shift has begun to happen in any significant way yet.
"Unfortunately, most physicians are not yet ready to integrate genomic insights into treatments decisions because they lack the necessary training," he explains. "The growing direct-to-consumer personal genomics market might cause this to change. When and increasing number of patients come to their doctors with their personal genome sequencing results in hand, the medical field will have to adapt."
While the brilliant insights that come from personal genome sequencing can be lifechanging for an individual's health, seeing a full picture of what's to come has the potential to be deeply unsettling. This is especially true when the results tell the patient something they may not have realized they did not want to hear.
"There is justified concern that learning about genetically determined disease risk (and possibly misinterpreting these risks) might cause considerable psychological stress to many people," concludes Grishin, admitting that "on a large scale, this might become a big challenge to healthcare providers".
As we finish speaking, it is clear that Nebula Genomics has a vastly different approach to data than most of its counterparts. It is a model that celebrates trust and privacy and empowers people to "become the first to profit from [their] own genomic data".