Offering free DNA sequencing, Nebula Genomics opens for business. But there’s an itsy-bitsy catch

Information wants to be free, says the old internet meme, and a genomics company will now apply that to DNA: Starting on Thursday, the startup Nebula Genomics is giving customers the option of having their full genome sequenced at no cost, a first for direct-to-consumer genetics.

There is, naturally, an itsy-bitsy little catch. Customers will have to answer a handful of questions about their health and other traits — from whether they have ever been diagnosed with cancer to their history of cardiovascular disease, diabetes, and other common ills to what medications they take, how physically active they are, and whether they smoke — in order to earn credits toward free sequencing. Answering the questions will earn enough credits, or “tokens” as the company calls them, to score free DNA sequencing.

ADOBE

Those who opt out of sharing information about themselves can get their DNA sequence for $99, a bargain compared to the $199 or so for other direct-to-consumer genetics companies such as 23andMe, which analyze a handful of disease-related regions of the genome rather than sequencing the whole thing.

An added inducement: The free-with-sharing test will have what’s called 30X coverage, a measure of a sequence’s accuracy (30X is good). The $99 sequence will be rougher, or about 0.4X at first, said Nebula CEO and co-founder Kamal Obbad, a former graduate student in the Harvard lab of a biologist (and Nebula co-founder) George Church.

Even 0.4X coverage can provide valuable information, he said. Nebula has already heard from pharma companies that with a high enough sample size, even that level of coverage for DNA sequences can help them find disease-related genes and therefore drug targets.

Nebula hopes the sequence data it generates for all customers, plus the health and other information it collects from some, will support all sorts of studies by pharma, biotech, and academic researchers. Those researchers will pay Nebula for access to data, all of it anonymized, much as GlaxoSmithKline is paying 23andMe $300 million for access to its customers’ data, hoping to find in it leads for new drugs.

Crucially, however, Nebula customers — those who answer questions as well as those who cough up $99 for sequencing — can say yes or no to any researcher who wants to include their data: Customers will be informed that a certain research group (which will be identified) is interested in accessing their data, and they can opt in or not.

From focus groups, Nebula has learned that most people are enthusiastic about sharing data that might cure disease. But some might object to their data being used in a study of the genetics of intelligence, for instance, or research on the relationship between schizophrenia or autism genes and ethnicity.

“You can deny any request for your data,” said Nebula co-founder and chief scientific officer Dennis Grishin, also a Church lab alumnus. Nebula, with offices in San Francisco and Boston, is still working out how detailed researchers must be in describing their study, since they might be concerned about revealing trade secrets or being scooped by a competitor.

By not selling its customers’ data without their knowledge, let alone approval, Nebula hopes to stand out in an ever-more-crowded DTC genetics landscape, said Obbad. In addition, “we will give them their raw data” — all 6 billion of the nucleotides A, T, C, and G that constitute a DNA sequence — “to do whatever they want with,” from asking a geneticist to interpret it for them to preserving it for their grandchildren.

Nebula will also provide an analysis of ancestrpreserveas a “polygenic risk score.” That’s an estimate of how the many gene variants associated with a disease or trait (such as general happiness, sleep quality, risk tolerance, height, and hair color) act in concert to raise or lower the chance of developing it. Full genome sequencing contains thousands of times more data than the analyses offered by most DTC genetics companies, which examine misspellings in a few dozen genes.

In addition to keeping the data anonymized as well as encrypted, Nebula’s core privacy protection will come from its use of blockchain technology, a distributed ledger that underlies bitcoin and other cryptocurrencies. When it emerged from stealth mode in February, Nebula said it planned an initial coin offering, but instead has raised $4.3 million in seed financing from 10 venture capital firms, including Khosla Ventures, Arch Venture Partners, Fenbushi Capital, and Mayfield.

Whether this works as a business remains to be seen. Genome sequencing is proving to be a hard sell, Church said. “We’re trying to figure out the business model to get people excited about” having their genome sequenced, he said at a precision medicine meeting in Boston on Tuesday. “Even at free, people don’t perceive the value.”

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