Amid privacy concerns in DNA testing, a new generation of startups is emerging with a view towards empowering people to participate in research without any downside risk for themselves.
Recent years have seen the costs of this type of testing decrease considerably such that there is now a market for testing at a retail level. Companies such as 23andme and ancestry.com have emerged, bringing the technology to the ordinary consumer.
Read More: Personal DNA tests expose relatives’ genetic data, third party interests
Now, a new crop of DNA testing and sequencing startups are emerging with a focus on privacy.
“We are building step by step, figuring out the right way to protect our community of token owners“
Harold Knoll
The Sociable spoke to Harold Knoll, Founder of Dayu — a DNA testing and data company that is taking such an approach.
The biological data company plans on giving tokens to service users in order to incentivize them to share the data. Users own their own data on the platform. Knoll hopes that this will generate a new dynamic with buy in from service users and researchers alike.
“You will have labs who will want to buy data – and they will pay with the token”, he says.
The founder is working towards implementing a blockchain-based solution in terms of tokenization. At the moment, customers are given tokens when they buy the test from the company.
However, Knoll feels that a blockchain based solution is required in order to anonymize the data and facilitate the DNA data marketplace.
“We are building step by step, figuring out the right way to protect our community of token owners”, says Knoll.
Given the problems that have arisen from initial coin offerings (ICOs) in the past, the entrepreneur is approaching the task slowly in order to get it right.
One potential aspect the company is looking at is to provide for some form of guarantee on the initial value of the token for investors and data contributors at launch. Previous ICOs have been hamstrung through price collapses in the value of the token.
“The idea is to gather data and to apply machine learning and AI techniques to really improve our knowledge about biology”
Knoll conceived the idea of founding the company in late 2017 with a belief in the sheer potential of DNA testing in advancing medical science.
“The idea is to gather data and to apply machine learning and artificial intelligence (AI) techniques to really improve our knowledge about biology”, he says.
Unlike the most well known DNA testing services at a retail consumer level, Dayu offers testing which accounts for close to 100% of a person’s DNA. With that, its product involves complete clinical grade DNA sequencing.
The most commonly known services in the market implicate lower pass sequencing which accounts for in the region of 0.2% of a person’s DNA.
Consequently, the price point for the product is significantly more expensive. However, it feeds into Knoll’s approach insofar as such data is far more valuable from a clinical research point of view.
As the entrepreneur explains, consumers who access these lower grade tests “will have to do it again in the future to have more information about [themselves]”.
Dayu also plans on expanding the depth of reporting that the user receives.
Achieving SEC Qualification
Dayu is not the only company to see the need to facilitate greater privacy and utility in the space. US-based LunaDNA views research as a community effort.
LunaDNA members share health data which they control as a single copy of their data which never leaves the platform.
The company is managed by a sister company — investor owned LunaPBC. LunaDNA members share genomic, personal, and health data; consent their de-identified data for use in aggregate for population-level research whilst earning ownership shares in LunaDNA.
“We pivoted away from digital currency and instead focused on achieving SEC qualification”
In discussion with The Sociable, a LunaDNA spokesperson confirmed its rationale in not utilizing a tokenized model on its platform. Despite being enthusiastic about the technology, lack of regulatory clarity has made its use a difficulty for the company:
“The SEC [US Securities and Exchange Commission] has not provided the regulatory guidance for establishing a cryptocurrency, and has signaled that token offerings initiated by sale of the token are securities. Without clear guidance, the value and timing of establishing a customer token were uncertain,” said LunaDNA spokesperson.
With that, Luna took a different approach. “We pivoted away from digital currency and instead focused on achieving SEC qualification to offer traditional stock shares in return for contributed data.”
Last December, LunaDNA was the world’s first company to receive qualification from the SEC to recognize an individual’s genomic and health data as currency with which to acquire shares of ownership in the Company.
In terms of its approach to privacy, data is stripped of personal identifiers (i.e. de-identified); all personal, health and DNA data is encrypted; and personal information is stored in a separate environment from health and DNA data.
Privacy vs. Utility
Another US-based company — Nebula Genomics — has entered the space. Its offering implicates lower pass sequencing data.
“By sharing data we have a lot more to win than to lose”
Clinical grade whole genome sequencing is not available right now – but is planned in the near future. Nebula is also looking at developing cryptographic techniques in order to secure genomic data and enable transparency.
As Knoll puts it, “By sharing data we have a lot more to win than to lose”. There’s no doubt that privacy concerns have curbed people’s willingness to participate. With safeguards now in the process of being put in place by Knoll and others, hopefully the endeavour of genome testing can progress for the mutual benefit of all.
However, with that eventuality has come some cause for concern for consumers. With the expanding popularity of such services, these expansive databases have become a target for hackers.
One such service, MyHeritage, had credentials relative to 92 million users exposed in a hack which was carried out last year. Whilst DNA data was not hacked, the episode demonstrated the fragility of such data when stored on centralized databases.
Handing over DNA data to private companies has greater repercussions than most consumers realize. One person’s choice to get tested means that close family members are similarly exposed – due to the nature of DNA.
Lastly, for many of the first generation DNA testing services targeting consumers, the user is not the customer. People pay for testing yet their data is resold to interested parties. Whilst generally, that’s likely to be research entities and laboratories, it also means big pharma. Many buy in to such services on this very basis – the altruistic belief that user data can be used to further and advance medical science.
Unethical DNA Data Use
But is it naive to believe that data is purely being used for the common good? Furthermore, given that it’s your data, shouldn’t you continue to have control over it and be paid for it if you decide to share it?
The general public is quickly waking up to the fact that their privacy in the context of online and other emerging services has not and is not being safeguarded in the way in which it otherwise should.
The Cambridge Analytica scandal implicating Facebook and its users data brought home to people that when it comes to many recently developed services, it’s them and their data that is the product rather than the other way around.
DNA testing and sequencing has the potential to further medical science considerably. However, these concerns over privacy are holding many back from contributing to and utilizing such services.
On the one hand, perhaps you’re OK with big pharma utilizing your DNA data for the advancement of science.
However, who’s to say that your data won’t be sold to a health insurer, leading to you paying a much higher premium or being excluded entirely (due to health risks identified in your DNA profile)?
Deoxyribonucleic acid or DNA was first discovered by Friedrich Miescher in 1869. Development beyond that was slow but eventually DNA sequencing and genotyping followed.
