Fifteen years ago EncrypGen co-founder Prof. David Koepsell wrote the book Who Owns You: The Corporate Gold Rush to Patent Your Genes. That book presaged and helped spur the effort to stop the practice of patenting unmodified genes, culminating in the Supreme Court invalidating such patents which were, at the time, abundant.
Gene patenting began largely because the Human Genome Project’s private arm needed to justify costs involved in developing new tech that is now vital to genomics, but at the time was nonexistent and costly. Patenting genes promised a return on the investment in the fundamental tech, and attracted Wall Street investment in companies like Craig Venter’s Celera, who pioneered the “shotgun approach” to gene sequencing. While gene patents helped make fortunes for companies like Myriad, who patented the BRCA 1 & 2 genes responsible for significant susceptibility to breast cancer, in the long run, their utility for genomic science and industry appears to be questionable. We are now in a golden age of genomic science without gene patents, and the projected value of the genomics sector over the next couple years is in excess of 40 billion USD. That value comes from the pharmaceutical and clinical value of discoveries in genomics, as well as promising new inventions that can come from revolutionary technologies like CRISPR, which allows us to alter genomes with precision.
A new Wall Street gold rush is happening in genomics. This time, it is focused on acquiring companies that have cornered the market on consumer genetic testing, and accumulated nearly 50 million genomic datasets. Nearly 9 billion has been invested this year in three of those large genetic testing companies, including the acquisition of Ancestry.com by Blackstone BX for 4.7 billion USD, the upcoming SPAC for 23andMe valuing the company at 4 billion USD.
As well, private equity firm Francisco Partners has acquired MyHeritage for an undisclosed sum, suspected to be in the neighborhood of 600 million USD. The total number of users of these platforms combined is over 50 million, and the value proposition of these acquisitions and investments must focus at least in part on the value of the data held by each. Ancestry.com and MyHeritage assure us they will not monetize users’ data, but they do not say whether they will let users do so themselves.
The fact is that genomic data from more than 50 million humans, combined with self-reported medical, behavioral, and demographic data, can help us all. That data could help lead to medical cures, better treatments, greater understanding of the genetic causes of diseases, and improved targeted medicine or even “personalized medicine.” The value for our health and our economy is potentially far more than the value of dollars being invested in these companies.
While Wall Street is seeking to monopolize that data, and cornering the human genome, some companies are seeking to democratize and decentralize genomic data markets. The choice is now this: will the genomic data markets be monopolized by big investors, as gene patents monopolized parts of the human genome, or will our genetic data thrive in an open, global market where individuals can profit from selling their de-identified genomic data?
The choice need not be zero sum. The public declarations by MyHeritage and Ancestry respecting individual autonomy over genomic data is promising, and could well lead them to adopt platforms like EncrypGen’s that allow people to control and monetize their own genomic data, earning money for the value of their data and benefiting science directly. Free markets and transparency, as well as individual control and autonomy, perhaps mediated by blockchains and cryptocurrencies, may well be the wave of the future for all sorts of data. Many people are betting on such a future, and deeply involved in developing such free markets.
So far, there are scant laws that recognize rights over medical or genetic data, and those that exist are limited only to preventing discriminatory uses. Legal systems in general have trouble dealing with data ownership because, without invention or original expression, there is no real legal framework for “owning” data at all, besides keeping it secret. But secret keeping is harmful to science where basic research and scientific progress depends upon sharing observations with other scientists. Without new legal frameworks that create ownership rights for data, blockchain-mediated marketplaces offer transparency, audits trails, and settlement via cryptocurrencies allowing anyone who has done a genetic test to market their de-identified data directly to researchers.
Free markets like these may be the only alternative to existing and increasing monopolization, and may also help move large Wall Street investors toward a future of individual autonomy and shared profits for a healthier, democratic, decentralized, and disintermediated genomic future.
Encrypgen recently concluded its bond sale (security tokens, convertible to equity after two years) raising $200,000 USD, which they hope will jumpstart their user base growth. Their $DNA utility token is likely to bring value once the acquisition of tens of thousands of users has been achieved. To date, 7020 people have created Gene-Chain accounts, with associated $DNA wallets. Prof. Koepsell envisions a new genomic economy whereby users can transact with researchers to realize the value of their data. Existing partnerships with DigiPharm and more recently Indygeneus.ai are likely to bring even further benefits as the company strengthens its network effects. Users simply need to bring their already existing genomic data to contribute to what is, in my view, the most ethically sound option available.
A lawyer, philosopher and Yale University Post-Doctoral Scholar in Bio-Ethics, Dr Koepsell has, in my view, the credentials to lead what is perhaps the most valuable asset humans possess – their personal DNA.