GeneNFTs could be a game changer in genomic testing. However, it is important to educate users about this model before they can make progress.
It is predicted that nonfungible tokens (NFTs), will have a huge impact on society. It shouldn’t surprise that the trillion-dollar healthcare industry has started to look into NFTs tokens in order to improve medicine.
It is also important to note that blockchain technology can play a growing role in the healthcare sector. This was highlighted by the European Union Blockchain Observatory. It specifically describes how blockchain applications can address the challenges facing the healthcare sector.
The paper states that transparency in data storage and patient engagement is crucial for healthcare. As blockchain technology continues to develop, tokenization in the form nonfungible tokens could be a solution for many of today’s healthcare industry challenges.
GenNFTs are a revolution in precision medicine
According to the Precision Medicine Initiative, precision medicine is “an emerging approach to disease treatment and prevention that takes account of individual variability in genes and environment for each person.”
Cao believes that tokenizing genes can allow patients to retain data ownership and transparency, while also providing many benefits not usually associated with traditional genomic testing. He explained:
Genetica, a genomic company that serves the Asia Pacific region, has partnered with OasisLabs, a Web3 data management company, to tokenize genetic profiles. Co-founder and CEO of Genetica, Tuan Cao, explained to Cointelegraph that this partnership aims to improve precision medicine by giving patients data ownership through GeneNFTs.
“This could be the most important NFT application in the world. An NFT should represent our unique genetic profile. GeneNFTs represent tokenized ownership of genetic data. This allows each person to take full control of their data and gain benefits from it.
Cao says that traditional genetic testing companies, such as 23andMe for example, depend on intermediaries to collect data from patients for research. Users must therefore trust central entities to secure sensitive health information. Users are not offered incentives to share their data with other parties. However, tokenizing genomic data as an NFT could transform this model completely.
Cao explained, for example, that Genetica’s partnership is with Oasis Labors. This allows users to take a traditional genetic test and then receive a GeneNFT that will give them true ownership of their genetic profile. Cao also noted that GeneNFT holders are the gatekeepers for their data and must allow access to any third-party entities who wish to use it. He elaborated:
“A GeneNFT user also has the private key to that data. A proposal must be submitted by a pharmaceutical company if they wish to access genetic data. To approve access, a user must sign the proposal.
Cao explained that GeneNFTs offer both medical and financial benefits. “Financial advantages involve revenue sharing. Users will be paid when third parties request their data. Cao said that blockchain technology and smart contracts allow us to automatically issue these payments.
Cao believes the GeneNFTs have more medical benefits than the financial incentives. A smart contract is used to ensure that patients receive treatment when they participate in a genetic research. He said that precision medicine profiles are used to treat certain diseases using genetic variants. This is how the model is ultimately helping advance precision medicine.
Dawn Song, founder and CEO of Oasis labs, explained to Cointelegraph that GeneNFTs could be considered data-backed, non-fungible tokens. She explained that NFTs are often referred to as JPEG images. However, data-backed NFTs combine privacy computing with blockchain to make use of certain data, while also complying with data usage guidelines like the EU’s GDPR. Song explained that Genetica will use Oasis Network’s Parcel, which is a privacy-preserving, data governance programming interface (API), in order to tokenize genomic profiles. She went on:
“Gems are the most important part of an individual’s identity, so it is crucial that any platform that stores or processes genomic data maintains confidentiality. Parcel offers these capabilities through the use of encryption and trusted execution environments. This ensures data confidentiality.
Song explained that Parcel uses off-chain storage and secure execution environments to make it possible for genomic data to be stored and processed. She added that Parcel supports a policy framework to be used by data owners (or individuals who are the owners of their genomes) to determine who can use their data for what purposes. Oasis Lab technology has already enabled tokenization of 30,000 genome profiles. Genetica’s partnership will allow for an additional 100,000.
Tokenization is already used in the healthcare industry
NFTs are a new concept in the healthcare sector. However, it is interesting to note that tokenization (in a different sense than NFT) is growing more common as patient privacy becomes more important.
Seqster, which is a healthcare technology company, was founded in 2016 and provides tokenized data that addresses privacy concerns across the healthcare industry. Seqster’s CEO, Ardy Arianpour, explained to Cointelegraph that the company tokenizes a variety of patient data, including genomic DNA, for healthcare providers.
“Seqster tokenizes patient information such as name, address, date of birth, and email to create a set unique tokens that can be used by a company to identify patients within their network. Tokenization allows every organization, payer, payer, and researcher to have an internal unique ID that represents a real patient. It does not reveal to any other party involved in a transaction who the patient is.
Arianpour stated that tokenization is necessary to prevent the patient’s personal health information from being disclosed without their consent. This would violate the Health Insurance Portability and Accountability Act. Arianpour said that tokenization can be helpful but not necessary. In certain situations, such as clinical trials, the sponsoring organisation can create a “subject_id” that uniquely identifies the patient. This ID can be shared with their partners or within their own organization without disclosing the patient’s identity. He said that this standard is more commonly used in clinical trials and meets FDA compliance.
Datavant, a company that provides healthcare data, also uses tokenization to protect patient information. McKinsey & Company hosted an interview with Pete McCabe (CEO of Datavant), in which he explained the use of tokenization.
McCabe of Datavant describes tokenization as “cutting edge, patent-pending, de-identification technology that replaces patient information with an encrypted token that cannot be reverse-engineered to reveal it.” This means that two data sets can now be combined using patient tokens without sharing patient information.
Education is crucial
NFTs are being used in healthcare. However, there are a few challenges that may prevent their widespread adoption. Robert Chu, the co-founder and CEO at Embleema, a data platform that allows personalized medicine, explained in the EU Blockchain Observatory’s healthcare report, that data must first be de-identified in the United States. There is no way to re-identify patient information. Chu explained that it becomes difficult once only a small number of patients are included in the data set.
“In this case, it might be impossible for any method of completely de-identify data. Do we ban research on rare diseases? It shouldn’t, in our opinion. This is a good example of how privacy and innovation must be balanced.
Chu made the point that Cao stated that GeneNFTs users who participate in clinical studies will be treated first if they provide their data. Their data could also be identified, which could lead to regulatory concerns in certain regions such as the U.S.
Cao also shared the fact that 95% of Genetica users don’t speak Crypto. Cao believes education is the greatest obstacle to GeneNFTs adoption. He stated that it was necessary to make sure all users are educated about the benefits of GeneNFTs. This includes explaining how they can be used to access data, their ownership and usage. Song agreed with Cao that the greatest hurdle to adoption is user education. “Most users know what an NFT is but aren’t familiar with data-backed NFTs.”
Song believes data-backed NFTs can transform society, even though this is not the case at the moment. This approach is likely to grow quickly, but first we need to make sure users understand the model. User awareness of emerging data protection methods has been significantly higher than it was a few years back.
