In 2015, 23andMe, a California-based genetic company, reportedly sold its customers’ data to biotech company, Genentech, for $60 million. This collaboration aimed at developing a drug for Parkinson’s disease was initially chastised by authorities for operating without the US FDA’s clearance. Whilst the partnership was profitable to both companies, what effect did it have on the pockets of the Parkinson’s customers whose DNA data was sold?
So, whether or not you should get paid whenever your health data is used or sold is a long-standing question, of which the answer would likely to remain as a “yes”. The Chicago Booth/Kellogg School Financial Trust Index evaluates consumer trusts in industries and, according to a survey it conducted, about 93% of the respondents were unwilling to share their health data with tech companies for free - over 50% would not sell their health data for less than $100,000, 13% would sell their protected health information for between $1,000 and $10,000, and 27% would be open to an amount less than $1000. Clearly, although the price varies, the majority would like to be compensated for use of their data. Meanwhile, the global genomics market was valued at $32.65 billion in 2023 and the market is projected to gain significant momentum over the coming years, exhibiting a CAGR of 16.5% from 2024 to 2030. And, in spite of this expected growth, many still worry that the individuals whose data is being used and sold may be financially uncompensated or under-compensated.
Whilst historically, many people have associated blockchain with Bitcoin and crypto, its technology has shown great potential and is being widely adopted and used across multiple industries. The advantages of blockchain technology include the decentralized nature of the digital ledgers, its tamper-resistant nature and the shared transparency across blocks. Blockchain technology provides a way to manage data associated with legitimate owners - it makes possible the transition from an “internet of people” to an “internet of value” where biomedical data sharing and monetisation of genetic data is possible. The deployment of blockchain-powered platforms can offer noteworthy tools for the healthcare industry to address challenges, including management of healthcare data protection, personal health record data management, electronic medical record (EMR) data, point-of-care genomics management and Health Information Exchanges (HIEs). This is conceivable because a blockchain framework utilises a decentralized, immutable record to store information in a way that is constantly verified and re-verified by each party that uses it, rendering the information almost unalterable. It is a database for recording information and cryptographically enforcing it so as to ensure the integrity of the data and produce a time-stamped and immutable, single version of the truth. Blockchains also have the potential to revolutionise the management and monetisation of genetic data and, in times of cutting-edge biotechnology, the co-action between blockchain and genomics offers a transformative approach to the management and utilisation of genetic data. This convergence presents a robust platform for the secure storage, exchange and monetisation of genomic data.
Unsurprisingly, as genome sequencing becomes more common, questions arise about data ownership. Individuals who undergo genetic testing surrender their data to companies (often without realising it), which may then monetise the data by selling its valuable information to pharmaceutical firms. However, more important though is, who owns the data generated from genetic tests? In recent years, there has been increasing support from the general public, patient groups and scholars channelled towards recognising individual ownership rights of genomic data. Blockchain-based platforms, such as Zenome and the California-based Nebula Genomics, are being rolled out to provide an ecosystem in which individuals can maintain ownership of personal genomic and health-related data - and choose when and how to share their data. Blockchains ensure data ownership and integrity by storing genomic variants and reference-aligned reads on a private blockchain network, so the technology not only ensures security but also allows individuals access to their genetic profiles. Essentially, this allows an individual to retain ownership of their data whilst contributing to medicine and science. And Zenome and Nebula are leveraging the technology to create a fair marketplace for genetic information, empowering the genetic testing consumer to control the use and sale of their own data.
Genetic data is sensitive information and requires the maximum level of security to prevent breaches and unauthorised access. To ensure data integrity and confidentiality, blockchains employs secure consensus algorithms and robust encryption method implementing cryptographic techniques such as zero-knowledge proofs which enable individuals to verify the authenticity of their data without revealing the underlying information. In this regard, tokenisation involves representing genomic data as digital tokens on a blockchain - this method enables easy transfer of ownership, enhances security and even allows individuals to responsibly monetise their genetic data. Tokens can be traded or used to grant conditional access to third parties for personalised medicine or research purposes. Tokenisation ensures transparency, traceability and privacy and enables individuals to benefit from sharing their genetic data whilst retaining control over it. LunaDNA, a start-up aimed at providing people control over the use of their genomic data offers Luna Coins to those people who have contributed genetic data to the company’s database (although, unfortunately, earlier this year, the San Diego-based blockchain-mediated firm announced its shutdown). Nebula Genomic, founded by George Church in 2018, has focused on both accelerating genomic data generation and enabling access to genetic data using decentralized, privacy-preserving technologies whilst ensuring fair compensation. In August 2021, the personal genomics company was acquired by ProPhase Precision Medicine, Inc., a subsidiary of ProPhase Labs.
However, monetising genetic data also raises questions on consent, ownership and the possibility of discrimination based on genetic makeup. Ethical guidelines and regulatory frameworks must be established to oversee the use of genetic information. Smart contracts on genomic blockchain can encode these regulations and automatically enforce consent agreements, thus enabling individuals to determine how their genetic data can be used. In the evolving realm of genomic data management, the advent of blockchain has unwrapped new avenues for creating value and monetising data. The convergence of genomics and blockchain has led to innovative business models that capitalise on the inherent features of blockchain to manage and utilise genetic data. Such models not only address the complexities of data ownership and privacy but also incentivise the sharing of genetic data and provide avenues for researchers to access a vast, diverse pool of data, which is pivotal to the advancement of medical research and the subsequent development of targeted therapies. As this field matures, there will likely be more innovative applications at the intersection of genomics and blockchain and will, in turn, create a new asset class of individuals to directly benefit from and investors the ability to diversify into an uncorrelated asset for their portfolios.
This article first appeared in Digital Bytes (27th of June, 2024), a weekly newsletter by Jonny Fry of Team Blockchain.