Blockchain is not just a buzzword but a truly transformative technology that will reshape how we manage healthcare data – Aldo de Pape, genomes.io

Aldo de Pape

Aldo de Pape is co-founder and CEO of genomes.io. Aldo is a serial entrepreneur who formerly founded TeachPitch, a technology that helps teachers and schools with the problem of information abundance through curation, artificial intelligence and online training. He has also worked in scientific publishing for Springer and Macmillan and is author of a children’s book called ‘I am!’, published in 2008.

For the benefit of our audience who may not know you, can you give a short explanation of what genomes.io does?

The best way to explain what we do is that we provide blockchain-enabled security for your genome from the moment it is sequenced. We both sequence your genome and return the data back to you securely via the blockchain. You could compare it to saying we are giving – only to you – the key to a vault where your unique genomic data is stored.

Our blockchain-enabled platform provides users with a technology to securely and privately sequence, store, manage and commercialise their genomic data. In our model, the user remains in full control of the most valuable piece of private information they will ever possess: their DNA data.

Both DNA sequencing and blockchain are very new concepts for many people. Why might someone want to get their genome sequenced?

In this day and age there is a general awareness of what a genome is and that understanding is becoming more mainstream. The same can be said of blockchain! Our genome is what makes us human and unique. It is the blueprint to what makes us who were are. With the rise of direct-to-consumer genetic testing, we are now entering an era where it is becoming increasingly easy to get your genome sequenced. This could be something as simple but life-changing as a paternity test through to wanting to dig into your family history or looking into whether you have the genetic predisposition towards certain diseases like breast cancer, for example, or even finding out whether you should try to make it as a professional athlete. As we move into an era of personalised and preventative medicine, having your genome sequenced will form a vital part of standard healthcare practice.

And why would having a blockchain-based system be an advantage?

Al Gore wrote a piece back in the 1990s called “The Metaphor of Distributed Intelligence” and that headline somewhat captures the essence of where blockchain can play a part. Just as Gore described how democracy has triumphed over governments that depend on a central authority, blockchain represents a technology with the potential to power a personal data revolution, putting the individual back in control of their data. We are aiming to combine the most complex building blocks in nature with a technology designed to handle it. Blockchain has two key purposes in our model. Firstly it allows decentralised storage of extremely large data files, permitting large scale data aggregation. One human genome is around 200 gigabytes! Secondly, it provides the infrastructure through which individual data owners can grant data buyers (pharma/biotech companies) access to their genome in an efficient, trustless and completely secure manner, which bypasses the need for a centralised entity (e.g. a bank) that would compromise genomic data privacy and incur transaction fees for both parties. We think of blockchain not just as a buzzword but as a truly transformative technology with the potential to reshape the way we manage healthcare data.

Many people have concerns about data privacy, particularly when it comes to something as sensitive as healthcare data, how will users be sure that their healthcare data won’t be compromised?

Data privacy and security is the basis of our existence – it’s what we live and breathe so we had better get that right! Our initial seed round was massively over-subscribed and we are now in the process of raising the next round of investment. We plan to invest this money to further develop our technology and build the platform alongside trusted partners with expertise in their field to ensure it is ‘best of breed’ in terms of genomic data security.

What about from a corporate perspective – what is the additional advantage to insurers or pharmaceutical companies being able to query your customers’ genomic data from a company like genomes.io versus what they do today?

What is important for us is that the individual user has control and is central to everything we do. At genomes.io, we will give you a range of options of how and with whom you may want to share your genomic data – that could include insurers or pharmaceutical companies or other scientific research bodies or medtech companies – but ultimately the choice will be in your own hands and you will need to give explicit permission for your data to be shared.

Not only does our model cater to the needs of individual data owners, but it also more optimally satisfies industrial demand for genomic data. Currently these companies are limited by relatively small genomic data sets of poor research-quality genotyped data and obtain them in an inefficient data acquisition model. Through the genomes.io platform, data buyers can access a larger database of human whole genome sequence data, with the ability to pose multiple queries to each genome. Each query request is written into a blockchain-based smart contract that, following permission granted from the data owner, is carried out instantly with complete confidence in its execution.

Presumably a large part of your success rests on getting enough people using your platform to make the data sets worthwhile. How do you plan to get new customers on board?

Yes, that’s correct. Long-term viability of our model will ultimately hinge on inspiring a critical mass of data owners to join the database, so as to establish real value our genomic data marketplace. We therefore have two initial strategies, which are inter-related. Firstly, we want to focus on building a direct-to-consumer product that captures the imagination and inspires individuals to take ownership of their genomic data, learn more about themselves and begin to take more responsibility for their own health. We are also investing time into raising awareness and educating the public on the subject. In addition, we are assembling a top class advisory board with diverse industrial and institutional expertise and are building partnerships with governmental and other organisational efforts to sequence and safeguard genomic data. We hope and expect both approaches to be successful but we are currently focused quite intensively on partnerships as we have a lot of interest in that area.

Can people who have already had their DNA sequenced by a private company benefit from your platform?

Absolutely! Although there is no way to secure DNA that has been sequenced and already shared by other personal genomics companies, an individual can upload their sequenced genome onto the genomes.io platform and begin to take back control. Even deleting DNA test results on sites such as Ancestry.com and 23andMe cannot wipe your genomic information from active or completed projects, but will prevent it from being shared in new deals. Once this is done and their genome is uploaded onto our platform, we can guarantee individual users complete transparency and security when it comes to genomic data sharing.

Using a technology known as partially homomorphic encryption-BLOOM, data owners will be able to grant access to a very specific part of your genome for a specific reason, be it to make money or to share information to advance a particular field of scientific research.

What will be the potential benefits for drug discovery as the cost of whole genome sequencing continues to come down?

As the cost of whole genome sequencing continues to decrease, this will ultimately lead to more whole genome sequence data being generated. In addition, it will expand DNA sequencing to new populations in less affluent parts of the world, opening up access to genomic data we didn’t have access to before, especially perhaps for rare or neglected diseases.

This data has significant value when integrated into companies’ drug development pipelines. Whole genome sequence data availability may well kick-start entry into a new era of precision medicine permitting the development of new and improved treatments for genetically-linked disease that are more likely to bypass clinical trials, be available to patients more quickly and can be tailored to patients based on their genetic backgrounds. The genomes.io model is able to aggregate and provide research organisations access to this increasingly valuable data, whilst safeguarding the privacy of individual data owners. In this way, we aspire to contribute to a new era of personalised medicine that is fair and beneficial to all.

And what is next for genomes.io as you continue to build the company?

Our first priority is to build the technology and make sure it is really robust. At the same time as we fully develop our technology stack, we are working on building partnerships, awareness and education about genomes.io. We also need to meet our next threshold for investment so we can continue to build the company. While I am not a geneticist, I am passionate about using technology for good and have already done so with my previous edtech business. I think genomes.io will make an enormous contribution to the good of society. I am already excited to build on our current success and am very much looking forward to what 2019 will bring for genomes.io.

Want to know more? Aldo will be speaking at Healthcare Unblocked 2018 in London this Friday. You can also find out more about genomes.io at their website or follow them on Twitter.

Can’t make it to the event? A selection of speakers will be debating the topic ‘Can Blockchain save the NHS?’ live at 2pm GMT/9am EST, hosted by our media partners at BrightTALK. Register for the webinar.

 

 

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