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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 <a data-ct-non-breakable="null" href="https://www.precedenceresearch.com/dna-sequencing-market" rel="noopener noreferrer nofollow" target="_self" text="null">estimated</a> to be over $10 billion in 2023, while leading consumer provider 23andMe <a data-ct-non-breakable="null" href="https://investors.23andme.com/news-releases/news-release-details/23andme-reports-fy2023-fourth-quarter-and-full-year-financial" rel="noopener noreferrer nofollow" target="_blank" text="null">took in</a> 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.
<figure><img alt="Stop giving your DNA data away for free to 23andMe, says Genomes.io CEO" name="" src="https://s3.cointelegraph.com/uploads/2024-09/0191bdd7-8cb8-7052-98d1-eaab02209dc5">
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<h2 id="strong-the-value-of-dna-data-and-the-looming-hacking-threats-strong">The value of DNA data and the looming hacking threats</h2>
According to de Pape, one core issue is that the average person simply doesn’t understand how valuable their <a data-ct-non-breakable="null" href="https://cointelegraph.com/news/vietnamese-officials-back-new-partnership-to-tokenize-genomic-profiles" rel="noopener noreferrer nofollow" target="_self" text="null">genomic data</a> 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.
<blockquote>
 “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.”
</blockquote>
But companies selling your data isn’t the only concern — there is also the threat of hacks and data leaks, like what happened to <a data-ct-non-breakable="null" href="https://techcrunch.com/2023/12/04/23andme-confirms-hackers-stole-ancestry-data-on-6-9-million-users" rel="noopener noreferrer nofollow" target="_blank" text="null">23andMe</a> in 2023 and <a data-ct-non-breakable="null" href="https://www.theverge.com/2018/6/5/17430146/dna-myheritage-ancestry-accounts-compromised-hack-breach" rel="noopener noreferrer nofollow" target="_blank" text="null">MyHeritage</a> in 2018. The United States government has cracked down on similar companies that allegedly <a data-ct-non-breakable="null" href="https://www.ftc.gov/news-events/news/press-releases/2023/11/ftc-california-obtain-order-against-dna-testing-firm-over-charges-it-made-myriad-misrepresentations" rel="noopener noreferrer nofollow" target="_blank" text="null">failed</a> to adequately <a data-ct-non-breakable="null" href="https://www.ftc.gov/news-events/news/press-releases/2023/06/ftc-says-genetic-testing-company-1health-failed-protect-privacy-security-dna-data-unfairly-changed" rel="noopener noreferrer nofollow" target="_blank" text="null">protect</a> customer data.
De Pape also pointed out that with the proliferation and increasing power of <a data-ct-non-breakable="null" href="https://cointelegraph.com/learn/artificial-intelligence-in-healthcare" rel="noopener noreferrer nofollow" target="_self" text="null">artificial intelligence</a>, it will soon be theoretically possible for a bad actor to steal a treasure trove of DNA data and <a data-ct-non-breakable="null" href="https://cointelegraph.com/magazine/ai-eye-is-ai-a-threat-why-ai-advance/" rel="noopener noreferrer nofollow" target="_self" text="null">design a powerful bioweapon</a>.
<blockquote>
 “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.”
</blockquote>
<h2 id="strong-encrypted-dna-vaults-and-genetics-to-earn-strong">Encrypted DNA vaults and genetics-to-earn&nbsp;</h2>
Genomes.io attempts to solve this issue through what it calls “vaults,” which contain users’ genetic sequencing results and are <a data-ct-non-breakable="null" href="https://cointelegraph.com/learn/telegram-vs-whatsapp-encryption-war" rel="noopener noreferrer nofollow" target="_self" text="null">end-to-end (E2E) encrypted</a> 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: <a data-ct-non-breakable="null" href="https://cointelegraph.com/news/dna-computing-breakthrough-could-turn-living-cells-into-functioning-blockchains" rel="noopener noreferrer nofollow" target="_self" text="null">DNA computing breakthrough could turn living cells into functioning blockchains</a>&nbsp;
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:
<blockquote>
 “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.”
</blockquote>
To hear more from de Pape’s conversation with The Agenda, listen to the full episode on <a data-ct-non-breakable="null" href="https://cointelegraph.com/podcasts/the-agenda" rel="noopener noreferrer nofollow" target="_self" text="null">Cointelegraph’s Podcasts page</a>, <a data-ct-non-breakable="null" href="https://podcasts.apple.com/us/podcast/the-agenda/id1659393166" rel="noopener noreferrer nofollow" target="_blank" text="null">Apple Podcasts</a> or <a data-ct-non-breakable="null" href="https://open.spotify.com/show/6azmkkIXj5LQbxTRAbAqXS" rel="noopener noreferrer nofollow" target="_blank" text="null">Spotify</a>. And don’t forget to check out Cointelegraph’s <a data-ct-non-breakable="null" href="https://cointelegraph.com/podcasts" rel="noopener noreferrer nofollow" target="_self" text="null">full lineup</a> of other shows!&nbsp;
Magazine: <a data-ct-non-breakable="null" href="https://cointelegraph.com/magazine/sic-ais-on-each-other-artificial-intelligence-threat-alignment-david-brin-author/" rel="noopener noreferrer nofollow" target="_self" text="null">‘Sic AIs on each other’ to prevent AI apocalypse says David Brin, sci-fi author</a>
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.

Stop giving your DNA data away for free to 23andMe, says Genomes.io CEO

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