George Church’s genes make history again. The Harvard geneticist was one of the first people to have his genome sequenced and is now auctioning it to the highest bidder.
George Church’s decision to share his personal genetic information is provoking controversy in the scientific community.
It is not the first time the Church has reached the headlines; the co-founder of Genomics of the nebula was one of the first people to publish online the 3 billion base pairs of DNA as part of the Personal genome project. Its DNA has already been used in countless studies and has now put the entire genome sequence in the auction block sale.
The goal of the Church, according to Nebula co-founder and CEO Kamal Obbad, is to highlight how blockchain technology can help people realize the value of their own DNA.
The transaction will be performed using a type of blockchain technology called a non-fungible token (NFT), which is a unique digital token for a single item and acts as proof of ownership.
The NFT for Church’s genome will consist of the digital location of its entire genome, along with the high-resolution digital art that represents its DNA and likeness. Although the artist has not yet been finalized by a Nebula artist, other creations of the team show modern and minimalist works of art inspired by a person’s DNA. Bidders will likely be collectors who want to own a part of the story, Obbad says.
Genome-based research is designed to develop tools to better predict diseases and treat them according to a person’s genetic makeup.
According to Obbad, this will be the first NFT for a genome and represents a case study of what the future of shared genomic data might look like.
“With NFTs, you can take ownership of your data. You can choose how you want to sell that data or how you want to be compensated and track who has access to your data,” Obbad says.
The movement aims to start a conversation about how people can share and sell their own genetic information in a transparent and secure format, he adds.
This is a deviation from the current DNA testing business model, which has earned billions of revenue for large corporations like Ancestry and 23andMe without sharing the profits with the people who made its success possible, according to Forrest Briscoe, Ph.D., professor at Penn State Smeal College of Business in University Park, Pennsylvania.
“People don’t understand the value of their data and its use,” says Briscoe, who adds that this effort could be a way for everyday people to start charging for DNA testing.
DNA testing is big business. Ask Blackstone, the privately held company that acquired Ancestry by $ 4.7 billion in December 2020. What sent this big money was not the company’s services that helped genealogists build their family tree, but the DNA database of 18 million users of Ancestry. That’s about $ 250 per individual genome.
Large companies
Companies like 23andMe and Ancestry have made their money by not selling DNA testing kits, which cost about $ 100 each, Obbad explains. Rather, they sell these kits at a loss and provide a tester genotype report in exchange for their valuable genetic information. Real money is earned by selling access to the sequences they have collected, along with the accompanying health surveys, to pharmaceutical companies, researchers and other entities. In July 2018, the British pharmaceutical company GSK (formerly GlaxoSmithKline) bought a $ 300 million stake in 23andMe.
Both Blackstone and GSK deny that their movements have harmed patient privacy.
“As we have said repeatedly, Blackstone has no access and will not access user DNA and family tree data, and we will not share this data with our other companies. To be clear, doing so never formed part of our investment thesis, period, ”a Blackstone spokesman said.
GSK reports that around 80% of 23andMe customers choose to participate in the research. The company says she and 23andMe take the privacy and security of all their data very seriously. “No single individual genetic data point will lead to a new drug and individual level data cannot be identified as part of the GSK-23andMe collaboration. Only summary statistical aggregated genetic data is shared with GSK. Identifiable personal information is stored separately from genetic data and in accordance with industry security standards. “
Still, the acquisitions of Blackstone and GSK drove the movements of a move for everyday users to recoup some of the benefits.
The first major hurdle to overcome is finding a large-scale platform where people can securely sell DNA sequences to the companies and researchers of their choice. The second is to figure out how to quantify what “fair and fair compensation” should be for a genome, according to Elizabeth Ford, PhD, a senior professor of primary care research at Brighton and Sussex Medical School in the UK.
“The problem with genetic data is that no one really knows what it can lead to and how much money a company could make in the future,” Ford says.
Most of the DNA used in research studies comes from individuals who give in to a sense of generosity and altruism without expecting compensation. Generally, people have been happy to share their data, says Tina Woods, co-founder and CEO of Longevity International, which leads the Open Life Data Framework to meet the government’s goal of adding five healthy years to the lives of British.
“We do it all the time with Google and Facebook,” he says.
The expectation is that scientists will maintain an individual’s privacy and that the goal is not financial gain. While as the potential for big paydays increases, more and more of our genetic information will be tied to financial chains, according to David Koepsell, JD, PhD, co-founder and CEO of EncrypGen.
A DNA sequence alone is not as valuable as it is when buyers also have access to the accompanying medical information, which can range from our favorite bedtime to details about our family history of heart disease and cancer.
“Big companies will know everything, including our address and our credit card information,” Koepsell says.
Give me $ 95
According to, users are beginning to realize the value built into their DNA 2020 Survey led by Briscoe and colleagues. Of the more than 2,000 people surveyed, only 11.7% said they were willing to donate their genetic sequences to scientists and 37.8% said they would not share their data at any cost. The remaining half said they would be willing to sell their DNA for an average price of $ 95.
“I’ve been studying this area for 4 years and if you told me I had to assign a value to my DNA, it would be a challenge,” Briscoe says.
To sell your own DNA, however, you need a platform to keep it safe. Both Nebula Genomics and EncrypGen have become blockchain to build a bridge between an individual’s genetic sequence and potential buyers.
NFTs have been used for storage The first tweet from Twitter founder Jack Dorsey; bids reached $ 2.5 million, although they are publicly available online. An NFT also has one Animated GIF by Nyan Cat, the Pop-Tart cat meme that sold for 300 ether, the platform’s cryptocurrency, which is currently estimated to be worth more than $ 1,000,000.
An NFT serves not only as a certificate of ownership, but also provides a record of everyone who has bought and sold the NFT in the blockchain. An NFT does not prevent someone from stealing the digital piece, but it does show that the person owns the original work.
Here is the scrub. “None of these technologies solve any of the real problems,” Koepsell says. “Creating an NFT from genomic data does not give you any rights over the data.” Without a legal way to recognize these rights, the field cannot move forward.
The Church’s genome auction has not yet been completed, but Obbad says the effort creates a major step forward in the fight against the “dark, opaque system” that currently governs DNA sequences.
“The real way companies make money is by monetizing the data, not by making a good product that they sold to happy customers,” he said.
Carrie Arnold is an award-winning public health journalist living in Virginia. His work has appeared in the New York News, National Geographic, New scientist, Scientific American, i Nature, among others. She is currently a Knight Science Journalism Fellow at MIT and is working on a book on the multigenerational effects of a Michigan chemical disaster.
