Talking Crypto #56 - Mark Hahnel From genomes.io
Primer: In this podcast of Talking Crypto, Gabriel Haines interviews Mark Hahnel from genomes.io. Mark shares us with why it is important to have your genomes sequenced and stored in a safe vault so that it is protected from falling into wrong hands. He also talked about how genomes.io aims to solve some of the issues present in this industry and explains how a user can earn passive income from the genome data stored.
Who is Mark Hahnel
Did a PhD in genomics and stem cell biology at Imperial College, London
Started a data publishing company called figshare, to publish academic data
Similar to the publishers of academic papers, except that other types of content or files can also be published with figshare
"So it's like a blog for universities."
- Gabriel Haines
Now it provides an academic publishing platform for universities like Carnegie Mellon and others around the world
The company that invested in figshare was doing crypto incentivized peer review of academic papers, so that was when he first heard about Ethereum in 2016
Was interested in the possibilities when the basic concept of smart contracts is extrapolated
Around 2017 to 2018, a few colleagues got together to start what is now genomes.io
Reasons for starting genomes.io
Before he started this, he is quite the libertarian who thinks that every academic should be making every type of data openly available
This is so that other researchers can use the data shared to do more research
But he realised that not all data should be made publicly available
If a study is made on endangered species citing where they are found, then it is not a good idea to release the data set because poachers might go and find them to kill it
Through figshare, he saw that a Cambridge professor is sharing his son's genome but this sort of genomic data should be more protected
Genome
What is a genome?
It is basically the human source code
"So your genome is basically the human source code, it is what makes you you, it is in every cell in your body, and it dictates whether you have blonde hair, or brown hair, or red hair, but it also dictates a lot more than that. And so it knows more about you than you know about yourself."
- Mark Hahnel
Contains a lot of personal information in there that you do not want to get into the wrong hands
The first human genome was sequenced in 2001 at a cost of $5 billion in today's money, but now it just costs less than $500
It is getting cheaper every year to get your genome sequenced
Why is it important to have genomes sequenced?
To be ready for a personalised medicine future
Currently, all drugs are given out in the middle of the bell curve distribution
If your genome suggests that you can process the drug faster, you might need a higher dosage of it
This allows for personalisation of the healthcare system to tailor for individual differences
E.g. you can look at your genome and see if a certain type of vaccine will have bad side effects on you, and if so, can opt to change to another one
E.g. Genomes.io is working with the Australian National Indigenous genomic centre, which is for the native Aboriginal folk of Australia
The government wants more genomic data from the Aboriginal folks so that the indigenous folks can have better medical treatment and care
But the indigenous folks do not want to deal with the government because of their contentious past
So what can be done is to have the leaders of the tribes control the multisig wallet that gives access to the genomes data of the people
They can then decide if they want to release the data and get paid for doing so
This will give control back to them in a transparent way
E.g. In Armenia, there is a specific and rare disease that affects a lot of their population called the Familial Mediterranean Fever
With more genome data collected, more treatment options can be researched
Healthcare providers and insurance companies can use a baby's genome to provide the most cost-effective way for a treatment program
Can check for changes in the genome by sequencing genome every year and find out the health risk associated with the changes
Cancer is the breakdown of the genome, so tracking the changes annually will give a headstart on the health condition of your body
Issues on having genomes sequenced
Lack of security for personal data
It is not right for private companies or the government to store our most personal data and to use it for any purposes
Exploitation
The data is also used to generate profit without fair compensation to the owner of the data
Due to the incentives that are offered to genetic information queries by the research companies, the ones that are most likely to accept will be from those countries that these research companies are hungry for more data
This can be seen as taking advantage of lower-income individuals to take their data
But other jurisdictions are exploiting their citizens just by swabbing the cheeks of homeless people for $20 in order to build up these genomic databases
Moral hazard
From a business perspective, the insurance companies that know your genome can flag you as a high-risk case and start to charge you higher premiums
Discrimination
There are also people with their health insurance cancelled or deported from Canada, because of their ancestry based on their genome
The problems right now
Lack of genetic diversity in genome data
Currently, if a company wants to do a research study and need genome data, they usually go to a genome data bank like the 100,000 Genome project
This project had 5 million people who volunteered to have their genome sequenced to make it available to the general public
However, 96% of these publicly available genomes are Western European or North American, so there is a lack of diversity in the genomes that are available
This affects drug research since there are going to be differences in other parts of the world due to genetic variation
In order to have access to different genomic data, the companies will purchase these data
E.g. Blackstone bought ancestry.com for 4.7 billion for all of their data, GlaxoSmithKline GSK paid $300 million for the 23 and me data too
With all the core information about every person on the planet, the research companies can do their research faster and create better drugs
Exploitative way of collecting data
Currently, the data is purchased from companies that are aggregating genomic data in the guise of doing a cool ancestry test
"It's a genius business model, right? They need to acquire data. So you pay them to take your data, which they then sell. It's genius. It's slightly exploitative, but it's genius."
- Mark Hahnel
These companies that aggregate genomic data are worth 4.7 billion to VC, so these are very valuable data
Genomes.io
How can genomes.io help?
For the research or pharmaceutical companies
Provides a platform for research companies to get genome data without having to spend a lot more money to start sequencing genome on their own
Will increase the speed of getting the required genome data and also lower the cost of getting it
Lowers the cost of getting genome data
Currently, a company pays about $90 per exome, which is just 0.2% of the entire genome
To have 1000 required genome data, the company needs a minimum of 500,000 genomes sequenced, which will cost them minimally $20 million dollars at $500 per genome sequenced
Instead of doing that, the company can send a query to genomes.io paying $50 per question to 1000 people, so it'll only cost $50,000
If the company asks 10 such questions, it's only $5 million, which is a quarter of the budget to get 10 times more results
Faster speed
Takes 18 months to find the genes expressing long Covid
Most people who catch Covid-19 won't become severely ill and get better relatively quickly. But significant numbers have had long-term problems after recovering from the original infection - even if they weren't very ill in the first place. This is known as long Covid.
But if everybody's genome is in a vault, a query can be asked to see if your genome expresses that gene and they will give you $50 for it
After a million respondents for a cost of $50 million, the research company will get the answer immediately, which is a huge time saver
For the owner of the genome data
High security of the genome data in a vault, with full control over who has access to it and also the option to make a passive income from the genome data stored
Security
Uses blockchain and cryptography with a repeat consent workflow
The genome is a 100 Gb file that is uploaded and stored in a Secure Encrypted Virtualisation Encrypted-State (SEV-ES) vaults from AMD and you have a seed phrase to access it through the app
The app uses the Ethereum blockchain with signatures to give access to the vault
Genomes.io can never access the stored individual genome without permission
Control over data and passive income
Every single time a company wants a certain genome data and they contact genomes.io, a query is sent
There is no overall consent for the genome data, so the consent is very granular which gives owners control over who has access to it in a transparent way
If your genome data is selected, you will receive a notification asking if you would grant access to the company in return for $50 worth of tokens
The company is not getting the whole genome, just an exome that is 0.2% of the whole genome
Hence you have control and also a possibility of making a passive income on your own data
GENE - deflationary utility token
GENE token
GENE token is deflationary with a 1 billion hard cap
Every order of a test kit through genomes.io using the GENE tokens will result in 10% of the tokens being burned
E.g. 100,000 kits ordered at $750 each at launch rates will result in 7.5 million GENE tokens being burned
This incentivises pharmaceutical and research companies to purchase and hold more of the GENE tokens now so that they can use them for queries over the next few years
For every query accepted, the user can earn GENE tokens. Users who have bought or uploaded their genome into a vault can have the option of earning GENE over time
Business model and workflow
You get your genome sequenced, either by genomes.io or other companies
The genome data is uploaded into a secure vault
Genomes.io will brokerage the queries of the data
Any research company that wants to buy genome data from genomes.io will have to buy GENE token first
If your genome data is selected, you will get a notification on your phone asking if you would like to be paid $50 in GENE token
GENE token is an ERC-20 token on the Ethereum blockchain
GENE token can also be staked to earn the governance token called GNOME
GNOME governance token can be used for voting basically gives ownership of the protocol
Eventually will be moving towards a DAO model
How to participate in the growth of genomes.io?
Follow their Twitter account and join the Discord server
Look for Markio on discord and ask him anything
Doing launches of the GENE tokens
If you want a part of it, you can earn a governance token and have a say in how the protocol develops as part of a DAO
Infographic
All information presented above is for educational purposes only and should not be taken as investment advice. Summaries are prepared by The Reading Ape. While reasonable efforts are made to provide accurate content, any errors in interpreting and summarizing the source material are ours alone. We disclaim any liability associated with the use of our content.