The Information Commissioner’s Office (ICO) has released a new report on the use of genomics in emerging technologies, calling for developers to take a ‘privacy by design’ approach and join their Regulatory Sandbox.

The ICO’s report highlights concerns around data security, bias, and third-party access surrounding the burgeoning use of genomics, which could one day lead to personalised insurance quotes, help solve crimes, and tailor fitness plans through wearable tech.

Using genomic research, developers can look at data from a person’s entire DNA sequence, not just single genes, which could open up new horizons in the personalisation and effectiveness of new technologies. 

One example of the real world impact of genomic research is the announcement this week of a new ‘surveillance system’ to monitor the threat of future pandemics, with life sciences firm Oxford Nanopore set to use long read gene sequencing technology to create an early warning system for biological threats.   

The ICO said their research showed a significant rise in the number of organisations now using genomic information, mostly within the medical sector, however there is anticipation that more firms will begin using this kind of data as it becomes widely available, including in areas like education, wellbeing, and law enforcement. 

With their report, the ICO are considering how genetic data is defined under GDPR, raising questions about when this information counts as personal data, or even as sensitive personal data, with all the privacy implications that come with it.

Some genomic data is undoubtedly highly personal and nearly impossible to anonymise, raising risks of misuse or identification if mishandled or improperly shared, while using the data in areas like insurance or law enforcement could lead to systemic discrimination, particularly if combined with models that might reinforce existing biases.

As a precautionary check against these risks, the ICO has encouraged companies working with genomics to collaborate with its Regulatory Sandbox, a free service that allows developers access to expert guidance on building privacy-focused innovations, ensuring they are legally compliant. 

Previous entrants to the Sandbox include the University of Edinburgh’s Smart Data Foundry, Thames Valley Police, NHS Digital, and the Global Cyber Alliance.

Recommended reading

• New Edinburgh Uni AI Tool Can Predict A&E Admissions
• Nearly a Third of UK Doctors Are Already Using AI
• UK Gov Funds VR, AI Tech Projects For Reducing Drug Deaths

Stephen Almond, executive director of regulatory risk at the ICO, said: “Genomics promises incredible benefits, from life-saving treatments to more effective learning support. However, with these possibilities come serious responsibilities, and privacy must still come first.

“Genomic information is arguably the most sensitive and revealing information a person has, with major implications for not only individuals but their families. We want to work with organisations in this field to ensure they handle this powerful data fairly, transparently, and take a privacy-by-design approach.”