Imagine a world where doctors use your DNA to give you personalised healthcare, schools can tailor support based on genomic information, and law enforcement produce sketches of suspects based on genomic material found at crime scenes. The Information Commissioner’s Office (ICO) has released a new report exploring these very scenarios in the fast-growing field of genomics technology.
However, as with all technological developments, it comes with questions about how data is used and protected. The ICO is calling on organisations to handle genetic information responsibly as these new applications develop and to build user privacy in from the design stage.
Genomics is the study of a person’s DNA, or genome, and can help us to understand how genes can influence traits, health, and disease. By examining the entire genetic blueprint, genomics helps in gaining a more in-depth understanding of a person. The report reveals a number of ways that genomics technology may develop over the coming years and decades:
Health and Wellbeing: Hospitals could be routinely using genomics to predict risks for diseases like cancer or heart conditions. Wearable health devices might track not only steps but support an understanding of how specific genes respond to diet, exercise, or medication.
Education: Schools might use genomic insights to better support students with special educational needs, from ADHD to dyslexia.
Crime: Law enforcement might harness genomics to identify suspects from forensic DNA samples, potentially using physical and behavioural traits to track individuals. The technology could lead to breakthroughs in unsolved cases.
However, the report also highlighted a number of potential data protection concerns, including the security of data, potential bias and discrimination as well as transparency and third party data.
Stephen Almond, Executive Director, Regulatory Risk at the Information Commissioner’s Office, said:
“Genomics promises incredible benefits, from life-saving treatments to more effective learning support. This, as with all innovation, should be welcomed and embraced. 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.”
Privacy-by-design in genomics means building protections into how genetic data is collected, stored, and used, ensuring privacy is a consideration from the outset and not an afterthought. This approach helps organisations innovate responsibly whilst safeguarding sensitive personal data.
The ICO is encouraging companies working with genomics – whether in healthcare, education, insurance, or criminal justice – to collaborate with its Regulatory Sandbox. This helps organisations develop innovative products whilst remaining compliant with data protection law. More information can be found here.
The full report, which is part of the ICO’s Tech Futures series, can be read here.
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