A major challenge in healthcare, of course, is non-interoperable data silos where useful information, including genomic and other healthcare data, stays in the hands of the organizations that gathered it.
Such data is usually not being put to work in a way that generates full value; when it is, typically the owner of the data doesn't retain full ownership or control over how it is used.
For one company, blockchain may be the answer to this challenge. Shivom is a firm that seeks to become a genomic and healthcare data hub with the aim of putting power back into the hands of the individual in terms of genome data ownership.
"What our company aims to do is to use the capabilities of blockchain technology that will enable the individual to maintain ownership of their data – that being genomic and related healthcare data," said Natalie Pankova, chief scientific officer at Shivom.
Blockchain also allows the individual to grant controlled access to that data to those who they believe requires it. For example, a physician, an institution whose research they would like to support, or a pharma company that's developing a treatment for a condition they may have."
"The goal is that with a unique, yet anonymous, genome ID, researchers can avoid redundant analysis of genomes across multiple genomic databases, thereby avoiding bias and false positives."
Natalie Pankova, Shivom
In doing so, Shivom hopes that the company can become a place for secure data storage and exchange, and with more users on the platform it can then develop a data marketplace, where many different healthcare services can interconnect and interact to use that data through permissions, thus allowing that data to be more valuable, be open, yet be more secure, Pankova explained.
Part of the way the company is working to solve this challenge is through what it calls a Unique Global Genome ID. The Unique Global Genome ID is a concept the company developed to link the owner of the DNA sequence to the DNA data when it is entered into the blockchain.
"The goal is that with a unique, yet anonymous, genome ID, researchers can avoid redundant analysis of genomes across multiple genomic databases, thereby avoiding bias and false positives," Pankova explained. "Researchers then can filter genomes according to origin and previously analyzed IDs. Re-sequenced genomes can retain the same ID associated with the individual, while the data set gets updated."
Similarly, if an individual uploads a sequence from another service provider, the genome ID remains the same while the data gets updated. This can help solve redundancies, inaccuracies and fraudulent uploads.
Shivom says the Unique Global Genome ID can revolutionize preventative healthcare and the way science finds solutions to more than 7,000 known rare diseases that are genetic in origin via its 'open marketplace' approach.
"There are challenges in pharma right now in terms of innovating on development of new medicines, and drug research and development costs are now more than $2 billion to produce a new treatment," Pankova said.
"These costs can be drastically reduced by using biomarkers, such as genetic markers, which improve the drug development success rates substantially," she said. "By helping secure the access for users' genomic information, we are in turn helping move sequencing efforts forward, and thus helping more genomic data available globally that pharma and other organizations – such as public health initiatives – can access on a permissioned basis to drive their research and development efforts."
Furthermore, by conducting sequencing efforts in populations and geographies that have typically been underserved by these efforts, the company says it can help uncover unique genetic patterns that are present across a spectrum of geographies. This unique DNA information that hasn't been tapped into before at this scale can substantially help improve research and precision medicine, Pankova said.
"The Unique Global ID plays an important role in helping ensure accuracy and integrity of the data sets, which helps provide better quality data for precision medicine efforts," she explained.
Why blockchain? The distributed ledger has a number of key features that make it ideal for the storage and sharing of genomic data components, Pankova said.
"Primarily, blockchain offers an additional level of security and trust, as data cannot be revised or tampered with," she said. "Secondarily, blockchain can help enable layers of privacy, ensuring that identities are kept private and users' information isn't easily accessible.
Additionally, it allows the user to retain data ownership and control, such that only the necessary information about the user is disclosed and disclosure is done under the user's control."
With blockchain, a user decides when and with whom data is shared, and by implementing a token mechanism into the system, users are better incentivized to share their data, she added.
"These components also align well with GDPR regulations and privacy by design," said Pankova. "With these characteristics, blockchain technology can help democratize genomic data sequencing and sharing across the globe, helping eliminate data silos, enabling greater collaboration, and thus enabling greater precision medicine initiatives to take place."
Paradoxically, she added, "by increasing security and putting ownership into the users' hands, it actually allows for more openness and collaboration in the community, as users trust is increasingly gained."
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