Fifteen years ago, the first sequencing of a human genome was declared complete, at a cost of about $2.7 billion. While the price tag for whole-genome sequencing has fallen considerably since then, it’s still far less affordable than typical direct-to-consumer genetic tests, which analyze hundreds of thousands of telling sites in the genome, rather than sifting through all 3 billion of its base pairs. A platform, announced by the company Nebula Genomics, now aims to change that by connecting individuals with researchers who will pay for the genome sequencing in exchange for a look at the results.
“This is the first step in realizing a world in which individuals control and are compensated for use of their genetic data by medical researchers,” Nebula cofounder George Church, who is also a geneticist at Harvard Medical School and MIT, says in a press release sent to The Scientist. “Nebula will produce the data researchers have been waiting for in their search for curative breakthroughs, higher rates of disease prevention, and dramatic advances in personalized medicine.”
With the announcement, Nebula joins EncrypGen, which launched its platform last week, in the marketplace of companies using blockchain-based technology to enable secure access to genomic data. Both aim to reward individuals for sharing their genetic and health-related information for use in studies. EncrypGen does not itself offer genetic testing, but users can upload data from testing services or buy a SNP-based test from one of its partners. EncrypGen’s cofounder and CEO, David Koepsell, writes in an email to The Scientist that the company plans to offer whole-genome testing through a partner on its website soon, and that he expects users will be able to subsidize its $1,500 cost with tokens earned through the platform.
This summer, Alta Charo, a bioethicist at the University of Wisconsin Law School in Madison, told The Scientist that selling access to genetic information isn’t so radical in an era when we already “monetize our privacy in many ways.” The new breed of blockchain-based platforms, she added, provides individuals with “potentially more opportunities to have very specific control over what’s given out and in what specific form.”