Keeping safe: unlocking the world’s health data


Dr Axel Schumacher is the Chief Scientific Officer of blockchain-enabled genomic data-hub start-up Shivom. Shivom’s platform aims to be the largest genomic and healthcare data-hub on the planet, allowing the world’s population to have their genome sequenced and securely stored with the help of blockchain technology. Here he shares his views on its potential to revolutionise healthcare

These days, there is little debate over the role that our genetic makeup plays in a number of different areas of our lives. The unique information trapped within genes unlocks the secrets of appearance, ancestry, intellectual capabilities, health and fitness.

Precision medicine is built around this understanding. Healthcare customisation of this kind involves making medical decisions, offering treatments and designing products that are tailored to the individual. It is an industry with huge potential to make a significant difference to the happiness and wellbeing of the whole of mankind.

One reason for this is that we know that many illnesses and disease are caused by some sort of genetic damage. Fifteen per cent of all cancers have an inherited susceptibility. Ten per cent of the chronic diseases that occur in adult populations, such as heart disease, diabetes and arthritis, have a significant genetic component. Twenty to thirty per cent of all infant deaths are due to genetic disorders. We also know that genomic medicine can enhance the understanding and treatment of as many as 7,000 rare diseases. This is especially important when you consider that these diseases are increasing at a rate of roughly five per week.

The state of precision medicine

Against this backdrop, the case for genomic medicine might well seem crystal clear. Certainly, there are a lot of people that expect this market to grow at an impressive rate of roughly 10 per cent every year until it is worth $142 billion in 2026. However, if the significance of genomics for treating all sorts of diseases and illnesses is already known, why isn’t the market already there?

One of the main reasons for this is that such predictions rely on people actually understanding their DNA profile. This would require them to undertake genomic sequencing, which has historically been a very expensive process. Fortunately, this is changing. While sequencing the first full human genome cost nearly $3 billion, it now costs roughly $1,000 and the cost is going down, and is estimated to go down to $100 within a few years.

Obtaining the DNA data is just one part of the story. Doctors need to analyse this information on an individual level in order to tackle diseases that are known to have a genetic origin using targeted treatments. However, for the precision medicine revolution to really catch fire, much more research into genomics and the treatments that can derive from it needs to be done.

The key factors that are stopping this from occurring now are the interoperability of DNA data and the willingness of organisations to share it with one another. There’s currently a lot of this data stored in the centralised databases of companies and health institutions that have been able to access individuals’ DNA up to this point.

Putting to one side the trust, ownership and privacy issues of this situation, the data isn’t in a consistent format that would make it easy to compare and contrast with data from another database. Even if this were to happen though, many organisations are not willing to share the data they hold with other related research institutions.

All of these issues together hold back the progress of precision medicine and the benefits it could bring to so many people around the world. If the full potential of customised healthcare is to be realised, researchers need to be able to access a global database of DNA, which is diverse, globally representative and secure enough for individuals to have confidence that their information won’t be compromised. With this sort of underlying platform in place, service providers could operate in an open market for precision treatments, with individuals able to access a solution that’s tailored for them.

Axel Schumacher

Blockchain – the solution to the privacy conundrum

Such an environment is made entirely possible by the advent of blockchain. The distributed ledger offers us the opportunity to establish this sort of open marketplace because of the underlying security of the technology. Individuals can store their DNA data on the blockchain so that only they own and control it. There is no need for it to exist in centralised databases owned by a third-party organisation, which are highly susceptible to a hack or data breach.

With their data securely stored, they can choose to anonymously share it with other parties for the purposes of medical research, public health studies or drug development. Not only that, they can be remunerated for it. This access to a global database of DNA will increase the range of diseases for which a treatment can be found, and reduce the time it takes to develop such treatments.

This is the big idea behind our new partnership with Genetic Technologies (GTG), the Nasdaq-listed molecular diagnostics company. GTG is at the forefront of precision medicine, having designed BREVAGenplus® ­– a clinically validated risk assessment test for non-hereditary breast cancer, something which one in every 11 women develops in their lifetime.

While this test is helping thousands of women around the world, its development wasn’t quick. In fact, collecting data to develop the BREVAGenplus® tests has taken over seven years to date. This kind of timeline will be massively reduced through access to Shivom’s blockchain-enabled healthcare platform, which aims to become the largest unique genomic and healthcare data-hub on the planet.

Progress through collaboration

The benefits of this partnership will be far reaching, Dr Paul Kasian, Chairman and acting CEO of GTG ­– a company that has already spent a significant amounts on research – has stated that it will be using the Shivom platform to access the benefits of research in collaboration with other personalised healthcare organisations.

This is significant because of our focus on sequencing ethnic minorities and broad global geographies, which will allow these collaborating companies to greatly streamline and simplify the task of collecting information for research and treatment development. Plus, it’s important to remember that all of this will be possible while keeping ownership and control of DNA data in the hands of the individual.

For precision medicine to truly make the impact that so many people believe it can, individuals need to be reassured that their data is securely stored, controlled and managed by themselves. If and when they decide to share this anonymously, they will enable researchers to develop tests and treatments for a whole range of rare diseases that affect thousands of people worldwide. Thanks to blockchain, this huge impact is much closer than many had thought.

About the author

Journalist and editor Kathryn Reilly has worked in consumer, contract and medical writing for more than 20 years.

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