Cambridge firm bakes ethics into its genomic platform
Sano Genetics is beginning to reshape the discussion about what happens to your sequenced DNA thanks to a software platform which links the public to the genetic research community.
The company’s personalised medicine platform links researchers with individuals’ genomic profiles, crucially putting the individual in charge of access to their own sequenced data.
Formed in 2016, Sano’s three co-founders – Patrick Short, Will Jones and Charlotte Guzzo – met while doing PhDs at the university. Patrick was studying mathematical genomics and medicine, Will computer science and machine learning with a focus on image data in biology, and Charlotte finance, neuroscience and the genomics of childhood cancer.
“We started working on the company in late 2016 as a hobby – a side project,” says Patrick at the company’s base at the Bradfield Centre on Cambridge Science Park. “We saw a couple of problems we thought we could help solve. One was that it was challenging getting hold of genomic data so new approaches were very important.
“The second was data privacy and putting people at the heart of the research process. It’s important people know where their data is going when they sign up for a test.
“We have a duty as scientists to ensure that people are involved in the research and I think it’s really important to give people ownership of how their data is being used – this is very much the DNA of Sano.
“Users can be comfortable and confident because there’s full visibility in the process.”
So how, I ask Patrick, can genomics reassure the public that there won’t be a social media-style model - as discussed at a recent public event - where consumer data is collected, then sold to third parties and used to target them with products and services related to their genetic circumstances?
“In terms of the business model I strongly believe you get better data if people trust you – trust is essential if you’re doing business today,” Patrick replies. “People are beginning to understand that this is big business and you can’t always trust the way things turn out, so we have a dashboard which enables you to see who is accessing your data, and whether you want to allow them to access it – similar, for instance, to allowing people to opt-out of political ads on Facebook, or saying you don’t want companies to use your data to sell you ads for, say, Coca-Cola... it’s important to get the system right at the start so people are in control.”
Sano Genetics’ public-facing dashboard involves uploading your data which is then matched to any research in progress.
If it matches, researchers may want to acquire it to further their understanding of specific disorders, but the dashboard user retains ownership of his or her data and chooses whether to give permission for any organisation to use it in their research. The user can then track the research as it progresses.
“With our dashboard anyone who’s already had their genome sequenced can upload it to their profile, it takes two minutes,” says Patrick, “and if they haven’t had their genome sequenced they add their details and we match them to where they can get their genome sequenced for free.
“It’s not always successful, researchers are working to strict guidelines, but the more people and research projects we have the easier it becomes to match.”
If researchers are interested in your medical profile but you haven’t had your genome sequenced then Sano Genetics can send you a sequencing kit, which includes a saliva test. The sample is then sent to the research organisation which decides whether to have the genome sequenced.
The platform is investment-friendly and the company closed a £500,000 seed funding earlier this month.
“The first investor was Seedcamp, then Cambridge Enterprise, plus quite a few Cambridge investors, with angels from Cambridge and London.
“The money is for hiring smart people mostly – we’re building a software platform which requires software engineering, bioinformatics, and science communication skills – and a small bit of capital expenditure on sequencing kits.”
The seed round was announced soon after a name change: the founding trio originally incorporated the vehicle as ‘Heterogeneous’ in 2017. So what happened?
“It was felt that Heterogeneous was a bit unwieldy, scientists know the word [‘diverse’ or ‘varying’] but others don’t,” Patrick says, “so we had a look at it from a practical perspective.”
Heterogeneous officially became Sano Genetics on April 9.
“The legal change had happened before, and the trademark was registered months earlier. ‘Sano’ means ‘health’ in Latin and many Romance languages.”
The wider connotations of health include a commitment to ethical standards. An organisation such a Sano Genetics, with a baked-in ethical code, is very welcome, but isn’t it time for an industry regulator?
“It’s a hard one,” says Patrick, “because it’s very challenging for regulators to keep up with the pace of technology, so companies also have to self-regulate.
“It’s not enough to say ‘it’s the wild wild west out there’. We have an internal framework for the reports we create and research we support.
“So for instance in breast cancer or cardiovascular disease you can see good progress in using genetic testing but other disorders – such as Alzheimer’s – what you can do once you know you are at risk is much less clear, and is much more in the research phase.
“We as a company really focus on aspects where you can really trust the science and provide information that is both interesting and actionable. That’s where we can make a difference.
“We think of what we are doing as direct-to-consumer research.
“Rather than selling reports to everyone, we focus on research areas where we know we can make an impact.
“Right now people can sign up for four specific research projects on the platform – psoriasis, muscular dystrophy, Phelan McDermid syndrome and a study on stomach ulcers resulting from taking aspirin.”
If you or your family suffer from any of these you may find the Sano Genetics platform of particular interest.
“We have 2,000 participants enrolled on the platform now,” adds Patrick. “We also have several patient group partnerships, so we can reach many more by working with them.
“They’re primarily in the UK, Europe and the US, but could be anywhere. You’ll often find people are really engaged in finding research, and there are people dedicating their lives to improving research in rare disorders.”
Very true. And to the names of those improving research in rare disorders can now be added that of Sano Genetics.