We’ve entered the golden age of personal genomics: it’s now easier, faster, and cheaper than ever before to explore the vast three-billion-base-pair terrain of the human genome. Onto the scene steps Nebula Genomics, a new startup that wants people to sequence their genomes, then sell their genetic data on the blockchain.
This may sound dystopian in the extreme, but it’s an idea whose time has come, insists Nebula’s founding trio – Harvard geneticist George Church, his PhD candidate Dennis Grishin, and ex-Google product manager, Kamal Obbad, who launched the start-up in early February. While private DNA testing companies like 23andMe and Ancestry.com charge customers for their service, then frequently sell the genetic data on to third parties, Nebula Genomics – which has more than $1 million in investments so far – wants to upend that model. It offers customers a way to profit from the process, by selling their genetic data within the hyper-secure realm of the blockchain. No other companies have had “a way of compensating the person other than through information,” Church says. “So far the only value that’s been prescribed is value to the companies, not the individuals.”
But it’s not just about sharing wealth. Nebula’s underlying aim is to incentivise more people to sequence their genomes. New technologies have recently decreased the price of full genome sequencing from $3 billion to less than $1000; in a few years’ time it’s predicted to drop to $100. Despite this, only one to two million people have taken the plunge – a small number in the grand scheme – because most are deterred by a potent mix of privacy and cost concerns. And yet, whole genomes have become invaluable for medical research, giving academics, biotech and pharmaceutical companies unprecedented power to understand the full scope of human disease and develop targeted drugs. Continuing that medical progress now depends on acquiring more genomes – which means convincing more and more people to share their precious DNA.
Nebula believes it’ll do a better job than its competitors. As well as the potential for monetary gain, Nebula’s whole genome sequencing – done in partnership with Veritas Genetics, for below $1,000 – offers superior genetic insights. A typical DNA test will only reveal parts of the genome where common mutations occur. But whole genome sequencing shows uncharted parts of the genome that could lead to the detection of rare disease genes, or perhaps even new genes that play an unrecognised role in diseases we already know about.
Read more: What is the blockchain? WIRED explains
On the Nebula platform, people can opt to get sequenced and not sell their genetic data. But if they do choose to share their genomes, they’ll be connected directly to interested researchers, biotech and pharmaceutical companies. That cuts out the middlemen, diverting profits to the sellers – which will be paid in cryptocurrency called ‘Nebula tokens’. Prospective sellers can also take a survey before they get sequenced that shares details about their medical and family history. If buyers consequently become interested in their genetic potential, they can offer to pay the individual’s sequencing costs. These are all features in Nebula’s package that other testing companies don’t provide: “We need something that will go viral, so everybody's talking about it,” Church explains.
Church reckons that the field of personal genome sequencing, in general, holds untapped benefits. For instance, people who get their genomes sequenced could expect to make huge savings on medical bills, by understanding their health risks better. In some cases, the overall savings for individuals, healthcare providers and insurers could be as high as $1 million, he says. Nebula could help to leverage those financial benefits via cryptocurrency and the blockchain. (Though, it’s worth noting the looming scepticism over cryptocurrency, with several banks in the United Kingdom and the United States shunning it, over fears of instability and fraud.)
Profit or no profit, the field of personal genomics is still littered with other problems – most crucially, security – that make people reticent to share their data. Legitimate concerns have been raised about giving your DNA to testing companies, who then legally own the data and can share it with multiple entities beyond your control. Nebula’s answer lies in the secure, independent, transaction-tracking architecture of the blockchain. Using cutting-edge cryptography, it will allow buyers to analyse genetic data, but never see the information in plaintext. “Effectively, data buyers will be able to run code on top of data using secure hardware and only see the results of the computation,” explains Kamal Obbad. The encryption will prevent them from downloading, copying, or sharing the data: it stays firmly in the seller’s hands. Sellers also remain anonymous, while buyers have to disclose who they are. “It will essentially be about improving ownership of genomic data,” Grishin says.
To increase its impact, Nebula will ultimately draw together several genomic projects – splintered across biobanks, academic institutions and companies – into its single platform to streamline data access. On the buyers’ side, that will make it easier to rapidly obtain large genetic datasets, rather than shopping around at different institutions and getting bogged down in months of paperwork. “We want to create an explosion of genomic data by removing the obstacles,” Grishin explains.
In a few months, Nebula expects to welcome the first people onto its platform. It will soon become clear whether its model will succeed in recruiting millions to share their DNA. But overall, society does seems to be warming to that prospect. In 2017 more people took DNA tests than in any years before, combined. While Church expects that it will be the financial incentive that initially gets people to share their genomes, he thinks that over time people could begin to see sequencing as a tool that empowers them in the face of disease.
“Right now people don't realise this is something they can intentionally do for their families,” he says. The more genomes that are plugged into Nebula, and the bigger its genomic database grows, the more skilled we’ll get at identifying gene variants for rare disease. As that roster of variants lengthens, we’ll be able to tell if an individual carries the gene for a particular disease – and their likelihood of passing it on.
“Communicating carrier status is [Nebula’s] knock-it-out-of-the-park value in my opinion. But the thing that will get people is the possibility that they will be making money, by doing good,” says Church. “They can say to their friends, ‘Hey, I just got $20, I’m part of a research community, and I’m benefitting my family. You should do the same thing.’ I can just see that spreading.”
Updated 22.02.2018, 17:00: This article has been updated to include Church's reflections on the field of personal genomics as a whole rather than a specific reference to Nebula's future returns.
This article was originally published by WIRED UK
