In the past few months, non-fungible tokens, or NFTs, have become the hot new investment trend, generating skepticism, confusion, and millions of dollars. Jack Dorsey, the founder and CEO of Twitter, auctioned off his first-ever Tweet for $2.5 million. A mega-piece of artwork sold for $69 million, and NFL star Rob Gronkowski earned over $1.5 million for his NFT collection of Super Bowl highlights. Meanwhile, SNL aired an NFT-themed spoof of Eminem’s “Without Me.”
It’s unclear if NFTs are just a fad. The real-world stakes of most NFTs have been relatively low so far. NFTs have expanded conversations about what ownership means, especially regarding creative work. But the data itself has had little to no consequence for personal safety, health, or pressing ethical questions.
However, a deeper discussion to explore this technology and its ramifications is increasingly necessary. As is often the case with new technology, potential downsides are often not discovered or accounted for until the technology is already established.
In the case of NFTs, prominent members of the synthetic biology community, among others, have auctioned off their genome as NFTs. Jack Dorsey auctioning Twitter’s first tweet for millions of dollars may seem fairly innocuous. But selling the rights to personal health data has important legal, technological, and ethical considerations that underscore that demand a closer look.
What Exactly is an NFT?
NFTs may have become a common topic of conversation, but they remain a relatively abstract concept. Non-fungible tokens are a novel cryptocurrency asset built on the Ethereum blockchain, akin to the blockchains of Bitcoin and Dogecoin. A blockchain is a decentralized and unchangeable ledger to track information. Selling something on a blockchain means everyone can see who the previous owners have been.
The important component of NFTs is their non-fungibility. This means that the token cannot be subdivided or exchanged like a paper currency, which can be broken down into smaller bills and coins. Owning an NFT gives a person the property rights to a tokenized representation of a piece of information, be it artwork or a sequence of DNA.
So, what does all this mean for a human genome?
Data Ownership: To Own a Genome? // Who Owns Your Genome?
Arguably, the human genome is “inherently non-fungible” as a “non-changing representation” of an individual’s “most fundamental and personal data.” From this perspective, a genome is well-suited to be an NFT because tokenizing it allows a person greater control over the monetization, ownership, sharing, and access to their genetic information. This can be especially relevant in the context of the pharmaceutical industry. The complexity of patient access to medical data and the extent to which such information is useful for biotech and pharmaceutical companies.
Patient control of genetic information and unique traits has been controversial for decades. In 1951, Henrietta Lacks, a Black woman with cervical cancer, had cancerous cells from a biopsy taken without consent. Her cells spawned the immortal HeLa cell line that is now ubiquitous in medical research, still used today without any compensation to Lacks’s descendants.
HeLa cells, taken from Henrietta Lacks without her permission and still used widely today. HeLa cells have been critical in advancing cancer research, posing an ongoing bioethical challenge. Credit: Josef Reischig, Wikipedia.
If NFT-versions of genomic and health data become common, healthcare could see a marked shift from the current status quo where patients often lack true control over the use of their data. Conceptually, more control over one’s health data seems compelling. However, there are key aspects to consider regarding laws, policy, technology, and ethics. Even if NFTs are still in the “fad” stage, the long-term consequences could be decades in the making.
First, there is an intellectual property dimension to consider. Ownership of any entity in any form, such as patents or copyrights, carries with it a bundle of property rights.
“Even with things that you own, there are certain things you can and can’t do with it,” says Stephen Abreu, intellectual property lawyer at law firm Sidley Austin LLP. However, he explains that the rules do not apply as cleanly when projected from more traditional forms of tangible property onto something more abstract such as data. Data does not quite fit into the four categories of intellectual property protection—patent, copyright, trade secret, and trademark—as cleanly as other “objects.” The murkiness of data ownership rights makes the already complicated discussion of ownership for NFTs even more nebulous.
An NFT is simply the ownership of a tokenized representation of something, rather than ownership of the thing itself. For an NFT genome, does auctioning off ownership of a representation of your genome imply the loss of “property rights” over your genome? This of course assumes you have ownership of your genome in the first place, which some debate.
By selling even a representation of your genome, its sequence becomes more publicly available. To date, there is no legal infrastructure to account for this exchange. There is currently no mechanism for a person who sells their genome as an NFT to exert any property rights or stop the owner of the NFT genome from using the data in any way they choose.
There is also a question of extracting value. If a pharmaceutical company purchases an NFT of a genome of an individual, this is arguably a better way to compensate individuals for sharing data that ultimately creates profit for a company.
“If you sell an NFT of your genome to a drug company, you’re licensing it to them to use for research,” says Alex Pearlman, bioethicist and science journalist. “That doesn’t mean that the pharmaceutical company owns it. It doesn’t mean that they get to just do what they want with it. Having it on the blockchain means that there’s a record of [their] access [to] it, but you’ve [still] sold them a license to use it in a certain way.”
Pearlman posits a further series of questions: Can such a corporation choose to out-license an NFT genome? What happens if that company is acquired or goes bankrupt? The answers to these questions are still unclear.
It does appear, however, that the relationship between a genome and an NFT can be an improvement above the current model of the technology industry or even other genetic testing companies. Currently, consumer data is leveraged to enable companies to profit, yet the users sharing their data are often unaware of who is using their data or why. An NFT could enable an individual to track who accesses their genomic data. However, it by no means seems to be a catch-all solution to various data ownership issues.
Genomic Privacy: Could an NFT Change Your Healthcare Costs?
According to genomic sequencing and synthetic biology pioneer Dr. George Church, who put his genome up for auction as an NFT, “[An] NFT enables limited genome sharing with the intended party, not the whole world,” and this exchange is negotiable in advance and every subsequent sale can be tracked.
Selling one’s genome as an NFT creates many privacy concerns. Individuals may not be able to revoke property rights to their genomic data once it enters an NFT blockchain. Image by Jan Alexander from Pixabay
However, this is an imperfect solution that still only has tenuous user protections. The ability to control not only who uses such genomic data but also how they use it remains unclear. There is a lack of legal infrastructure in this domain to truly enforce such control.
While the underlying blockchain technology may control access, it does not secure the NFT genome data itself. This dichotomy raises a question of privacy. An NFT genome is inherently more publicly accessible than if it were sequenced for just clinical purposes or not even sequenced at all.
Publically available genomic data has been used for public safety and justice. The notorious Golden State Killer was identified when law enforcement matched his DNA through a genealogy website, However, even in NFT form, the ability to access and utilize an individual’s genomic data can affect not only that individual but also their relatives.
“If your cousin [auctions their genome as an NFT], and then all of a sudden, you’ve been roped into something that you had no business being roped into, I would say that’s a harm to a person, possibly reputational, psychological, or emotional,” says Pearlman. At large, NFTs theoretically have major implications for genomic data for law enforcement and privacy as it pertains to the government.
Similarly, even though who accesses an NFT is tracked, a genome in NFT form can be used by the original owner or another individual granted access to create and disseminate a genetic risk profile of the person whose genome it is. If you sell your genome as an NFT, you may not be able to stop someone else from assessing your genetic risk factors.
Pearlman points out that this could be a huge issue for insurance companies: can they use it to deny that individual coverage? “Where do insurance companies get [genomic] information? Should they get that information? How is that information protected and are there laws that keep them from discriminating?” says Pearlman.
Selling one’s genome as an NFT or on some other form of blockchain may give individuals more control over their data along with potential compensation. But NFTs could also lead insurance companies to deny a person life insurance if they are genetically predisposed to certain conditions. There is no current legal framework to regulate these challenges. Image by StockSnap from Pixabay
Current safeguards are ambiguous, both domestically and internationally. The Genetic Information Nondiscrimination Act of 2008 specifically bans health insurance companies and employers from using a person’s predisposition for disease to make decisions about health plans and premiums or hiring and firing. But it is unclear to what extent genetic information can and should be protected under this privacy framework and what uses can be construed as discrimination.
“The dust hasn’t settled on what the actual legal landscape is going to look like,” says Pearlman. While a life insurance company may ultimately not be able to deny a person coverage, the privacy protections in clinical trials or legal investigations may be much more complex.
On the Horizon: Genome NFTs Start Critical Conversations
NFTs could be a useful mechanism to draw attention to key issues of ownership, use of, and compensation for personal data and creative work. However, Pandora’s box has been opened with the few NFT genomes on the market. Given the lack of existing frameworks to adequately contextualize this form of innovation, the world is already behind.
So far, blockchain-related and real-world genomic technologies have been largely driven by the private sector. There has been relatively little action on the part of governing or regulatory bodies. Church cites the Department of Justice for monitoring fraud and the Food and Drug Administration for managing safety and efficacy for innovations such as an NFT genome. However, the frameworks are inadequate for grappling with the fundamental questions of property rights and privacy that accompany a token for such a crucial form of data.
Church expects that current government efforts are enough to manage the world of genomes and NFTs, although there is a need to “remain attentive.” He likens genomic data to behavioral data collected by social media companies. “In both cases, the information can escape—a phone hack for behavior or DNA left on a coffee cup lip impression or skin particles,” says Church. ”More secure DNA info sharing is likely better than what we have now.” From Church’s perspective, it’s better to track one’s data intentionally rather than the existing paradigm, where DNA is shared unintentionally every day, from coffee cups to discarded tissues.
While good may not be the enemy of the perfect in promoting progress, the underlying question at stake for NFTs is the trade-off between technological innovation and the protection of individual liberty. There is also a question of which voices have a role in deciding what this trade-off should be.
While Church asserts “that so far, the stakes for DNA seem lower than, say, securing our power grid, bank transactions, and elections,” the same argument may not hold for healthcare privacy, civil liberties, and remunerations. In a future with such a wide array of possibilities, this same argument also may not hold if and when personal genomic data becomes more valuable.
Regardless of whether genome NFTs are a fad or here to stay, the need for these kinds of conversations will only grow over time. Presenting crucial, ethical, legal, and technological questions in a way that encourages participatory and critical evaluation of emerging technologies provides a way to guard against the potential pitfalls of any such innovation.