Genomes.io is at the forefront of a revolution in genomic data security and usability. By empowering individuals to take control of their DNA data through innovative technology, the company addresses pressing challenges in privacy, security, and equitability.
Here's a detailed look at the AMA with the Genomes.io team, shedding light on their mission, technology, and future plans.
Let's Start:
1. What motivated the founding of Genomes.io, and what are the core goals of the company?
First and foremost, we focus on the safety and security of your genomic data (DNA). We strongly feel this is the blueprint to who you are and that it is imminent you are cautious with it to prevent any sort of exploitation and abuse in the future. With our infrastructure, people are able to vault their data so they become the certified owner of their information. At the same time, we work with a growing number of pharmaceutical and biotech companies who might want to use their data for their research. If this is the case, each vault holder receives compensation for their vault being used in the midst of it—making this the safest, most transparent, and honest solution out there.
Our core values are privacy, safety, security, and equitability.
2. How does Genomes.io address the privacy concerns associated with genomic data compared to traditional genomic data companies?
Our focus is the safety and security of your genomic data. That is where we begin. The vast majority of players in the market start on other levels (such as profit or research at scale), causing them to overlook the pivotal role of cybersecurity of your data in a time where it really matters.
At minimum, we hope that our infrastructure and approach raise the proper awareness in the genomics industry that they should take the privacy, security, and safety of data owners and patients very seriously.
3. Why is genomic data security critical, and what potential threats does Genomes.io protect against?
The year 2023 was the highest year on record for cyberhacking and theft across the world. The HIPAA Journal reported over 725 healthcare cyberhacks victimizing over 133 million people in healthcare alone. Even though the global numbers for 2024 haven’t been published yet, the projected cost caused by cyberhacks is expected to reach a record-high $9.5 trillion.
In the genomics sector, there is the notable example of the 23andMe cyberhack, reported by the company in November 2023, whereby personal information, including DNA information, from over 50% of their user records (over 6.9 million people) were hacked. This is just one example in a list of many that demonstrate to us that the cybersecurity of bio-data is severely underestimated by the organizations who offer to work with it for research purposes.
Our infrastructure starts with the safety and security of the data owner and patient in mind—embracing all relevant tools and software to make it so.
4. Can you explain the advantages of whole genome sequencing over genotyping, particularly the 30x clinical-grade sequencing offered by Genomes.io?
WGS (Whole Genome Sequencing) allows you to get the best and most granular genomic insights available. In essence, it is the golden standard in sequencing. It unlocks a lot more information about you than your exome (at a 5x-grade) offered by many direct-to-consumer companies and is a lot more attractive for the research and pharma sector, should you want to participate in any of their surveys.
5. How does Genomes.io ensure data sovereignty for its users, allowing them to maintain control over their genomic information?
Your data is vaulted on our infrastructure and encrypted end-to-end with a software we developed using the tools of AMD (SEV-ES). Once it is on there, you (and only you) are given the keys to your vault. We as the builders of Genomes cannot open your vault to take the data out. Only you can.
In addition, we work with the blockchain to ensure we work with one version of the truth. An auditable trail is kept every time your vault is being used—either by yourself or by others.
6. What mechanisms are in place to ensure that users provide informed consent for data access and use?
We have developed a unique consent protocol that allows the Genomes.io user to give permission for the use of their vault every time a query is submitted. The user receives a short notification on their phone displaying all relevant details of the query (research purpose, commissioning organization, compensation, and future sharing of the research results) and can easily press YES or NO to participate.
7. What role does the $GENOME token play within the Genomes.io ecosystem, and how can users earn and utilize these tokens?
$GENOME is our utility token. It speaks to how we can genuinely make the use of your genomic data by the Pharma and Research industry as equitable as it can be. You’ll receive $GENOME compensation every time your vault is being used for research surveys (commercial or otherwise). In addition, we also have a point system active on our infrastructure rewarding you every time you invest in your own health by running our health reports.
8. What kind of personalized genomic insights can users expect to receive from Genomes.io?
Currently, vault holders can already learn the following about themselves through our infrastructure:
Insights into personal health and wellness (currently, we have over 40 active reports to help users own their health).
Insights into rare diseases users might be carriers for, which could potentially be passed on to their children.
Genetic ancestry insights, confirming regions where users' ancestors originated.
9. Are there any notable partnerships or collaborations that have significantly advanced Genomes.io's mission?
Yes! We were recently proud to announce our partnership with Bittensor.
The most exciting bit about this is that it allows us to embrace AI in a way that befits our ideas around data sovereignty and ownership—being highly respectful of the data privacy, security, and safety of individual data owners and patients—while still turbo-charging science.
Great things happen when DeSci meets DeAI, and we are here for it!
10. What functionalities does the Genomes.io mobile app offer to users, particularly in managing DNA Vault access?
The mobile app is the authenticator that confirms and checks in with you everything that happens with your vault on the infrastructure. It ensures that you (and only you) give consent on what happens with your vaulted data. A quick YES or NO to the question you receive through the mobile app will prompt us to continue with your vault or stop where we are.
11. How does Genomes.io generate health risk reports, and what insights can users gain from these reports?
We work with highly reliable, validated, and peer-reviewed Open Source scientific databases that generate all the necessary information to create these health reports. All relevant information is referenced in the reports so users can also conduct their investigation if needed.
12. What are Genomes.io’s expansion plans, both geographically and in terms of service offerings?
There is so much to be done! We have genuinely grown explosively ever since we announced the highly ambitious “Billion Genomes Project” and are well on track to make that a reality!
With a focus on security, privacy, and user empowerment, Genomes.io is setting new standards in the genomics industry, enabling both individuals and science to thrive together.
THAT'S IT FROM MY SIDE TEAM, THANKS FOR ANSWERING ALL THE QUESTIONS. ❤️❤️
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A heartfelt thanks to Aldo de Pape, CEO of Genomes.io, for taking the time to join this insightful AMA and sharing valuable perspectives on the future of genomic data security and equitability. Your vision and dedication to empowering individuals through innovative solutions are truly inspiring.
We wish you and the Genomes.io team continued success in your mission to revolutionize genomics and achieve the ambitious “Billion Genomes Project.” Here's to a future where genomic data is safer, smarter, and more equitable for all!
Here Are The Sources Discussed In The AMA:
Sources:
The HIPAA Journal: https://www.hipaajournal.com/healthcare-data-breach-statistics/
Keepnet Labs: https://keepnetlabs.com/blog/171-cyber-security-statistics-2024-s-updated-trends-and-data
Techcrunch:
https://techcrunch.com/2023/12/04/23andme-confirms-hackers-stole-ancestry-data-on-6-9-million-users/
Partnership with Bittensor:
https://blog.genomes.io/announcing-our-partnership-with-bittensor-to-build-a-subnet-to-advance-ai-driven-genomics-a7f934daca1e
The Billion Genomes Project:
https://blog.genomes.io/the-billion-genomes-project-e75290e8a2ee
That's it for today folks,
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