What is the value of DNA data? According to genetic testing companies like 23andMe and Ancestry.com, it’s worth much more than might be expected.
The global market size of the DNA sequencing industry was estimated to be over $10 billion in 2023, while leading consumer provider 23andMe took in nearly $300 million in revenue. However, what most people don’t realize is that the real core business model of companies like 23andMe is not the sale of personal DNA testing kits — it’s the sale of their customers’ genetic data itself.
These companies keep and sell their users’ genomic profiles to pharmaceutical companies and other researchers, while the users themselves get none of that revenue, nor any say in whether they want their data sold in the first place.
According to Aldo de Pape, co-founder and CEO of Genomes.io — a privacy-focused alternative to 23andMe — there is a better way to operate that both respects users’ privacy and rewards them when their data is used for research.
On Episode 44 of The Agenda podcast, hosts Jonathan DeYoung and Ray Salmond chat with de Pape to learn more about the true value of genetic data, why many genomics companies are not as innocent as they seem, and how Web3 and blockchains may offer an alternative approach.
The value of DNA data and the looming hacking threats
According to de Pape, one core issue is that the average person simply doesn’t understand how valuable their genomic data is and, therefore, is willing to give it away to companies for next to nothing. That average user might just want to know their ancestral background or “whether [they’re] making the right dietary decisions.”
However, these companies make a killing by then turning around and selling their users’ data to researchers, often pharmaceutical companies.
“They take your data to a lab, and in exchange for your $150 or $200, you get the report. But at the same time, you’ve paid more than that $200. You’ve also paid with your data because they now have the commercial rights over your data and can sell it to the highest bidder.”
But companies selling your data isn’t the only concern — there is also the threat of hacks and data leaks, like what happened to 23andMe in 2023 and MyHeritage in 2018. The United States government has cracked down on similar companies that allegedly failed to adequately protect customer data.
De Pape also pointed out that with the proliferation and increasing power of artificial intelligence, it will soon be theoretically possible for a bad actor to steal a treasure trove of DNA data and design a powerful bioweapon.
“Cybersecurity doesn’t only mean like, ‘Listen, are you going to knock on my personal door?’ It also means we need to stand up for the information of all of us.”
Encrypted DNA vaults and genetics-to-earn
Genomes.io attempts to solve this issue through what it calls “vaults,” which contain users’ genetic sequencing results and are end-to-end (E2E) encrypted so that only the vault’s private key holder has access. This means that if the company is ever hacked or sold to someone with less privacy-centric values, whoever gains access to the vaults will only see a garbled mess of encrypted text.
Related: DNA computing breakthrough could turn living cells into functioning blockchains
Because the vaults are E2E encrypted, Genomes.io cannot sell a user’s data without their consent. And when researchers do come to the company with requests to conduct a study, those users who consent to their DNA being used receive a cut of the revenue in the form of GENOME, the project’s native token.
As de Pape explained:
“If your data is queried, then the $50 per exome that went now into the pockets of 23andMe never went back to the individuals who paid to have their data sequenced. [...] We want to make sure that [our users] receive loads of information on a health level as to who they are, but also the proper financial compensation they deserve for the sales of their data.”
To hear more from de Pape’s conversation with The Agenda, listen to the full episode on Cointelegraph’s Podcasts page, Apple Podcasts or Spotify. And don’t forget to check out Cointelegraph’s full lineup of other shows!
Magazine: ‘Sic AIs on each other’ to prevent AI apocalypse says David Brin, sci-fi author
This article is for general information purposes and is not intended to be and should not be taken as legal or investment advice. The views, thoughts, and opinions expressed here are the author’s alone and do not necessarily reflect or represent the views and opinions of Cointelegraph.