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The risks of genetic data being misused led start-up company GeneCrypt to team up with Auckland’s Unitec Institute of Technology to develop a way of encrypting individuals’ DNA.
Now GeneCrypt’s tech, which encrypts genetic data and allows users to select who can see their DNA and which parts they can see, is being pitched to angels and other investors as it seeks to scale up into a full commercial product.
Team leader Denis Lavrov describes DNA as being an individual’s most important data and describes the lax security with which genetic information has been treated until now as “absolutely mad”.
The potential misuses of a person’s DNA are many and varied, Lavrov said, ranging from health insurance companies using it to discriminate against those with genetic predispositions, to employers deciding who to hire, to criminals using it for blackmail.
Over the past decade, technological advances have made it inexpensive for anyone to have their DNA mapped, with biotech companies such as 23andMe sending out postal kits for anyone on the planet to have their genetics sequenced.
DNA should be held as ‘securely as banking information’
Lavrov said genetic data should be treated with the same security as banking or other medical information.
“There have been cases already where the genetic data was used in a way that perhaps the original owner didn’t intend it to be used.
“For example, in the US there have been cases where insurance companies have supposedly used genetic information to discriminate between health insurance customers to see if one [person] would be more eligible for insurance at a lower premium and the other too much of a risk.
“There have been cases where criminals have been identified through their familial connections through databases like 23andMe, where their sibling has done a genetic test, [but] the criminal himself hasn’t.”
An example of this, Lavrov said, was the Golden State Killer.
“It’s absolutely great for criminal justice systems, I suppose. But you can imagine – if such data were to fall into the wrong hands – there is so much potential for identification.”
There was also the opportunity for blackmail.
“The genes they are sequencing will tell other information about you that, in the wrong hands, could be used to identify maybe you’re susceptible to a heart attack, or maybe you’re at risk of cancer, and that sort of information can be used to blackmail or for all sorts of nasty things.”
Potential of misreading DNA
“What’s making it even scarier right now is, actually, we don’t properly understand the genetic data,” Lavrov said.
Because of this, there was the potential to misread DNAs overall impact on an individual.
Research partner and biologist Gregor Steinhorn said for a lot of genes it wasn’t clear how they interacted or increased the risk of a certain illness, so rogue insurers may penalise an individual for having a predisposition when they had no increased risk.
GeneCrypt was founded by Kris Vette, who said DNA wasn’t like any other data that might be stolen by cyber criminals or misused by companies or authorities.
“Unlike financial and health record data which share common traits, our genomic data is unique. Once stolen, its value does not degrade with time.
“We can change addresses and cancel credit cards, but not our DNA. Anyone who has access can find out much about us and many health-related issues from that data.”
Genetic medicine would only develop further in the coming decade, so the value of DNA information would also become increasingly valuable, Vette said.
With high-profile recent hacks of medical data, including an attack on the Waikato DHB, the medical industry was becoming increasingly security conscious.
Vette said he had recently presented the technology to a group of angel investors, and had received positive feedback.
Technology used in GeneCrypt was based on research done by Unitec as part of the MBIE-funded Stratus project from 2014 to early 2021, which was created to return control of data to users.