We understand the need for further work in this area from a regulatory perspective, due to the range of potential uses of genomic information on the near horizon. As part of this process, we will continue to scrutinise the market and identify key stakeholders who are seeking to develop or deploy uses of genomic information. This will help us to continue building our knowledge and understanding of the issues raised, particularly in direct-to-consumer areas.
In particular, we understand that organisations and researchers desire greater clarity in understanding when genomic information may be personal information. We don’t consider that all genomic information is personal information, given the definition of personal information set out under the UK GDPR and the amount of genomic information that may not relate to an identifiable person. We will continue to work with stakeholders and experts to understand how and when these areas do overlap and how different uses and emerging techniques may shift the boundaries. In turn, this will better enable us as a regulator to offer guidance and advice to organisations working with genomic information to ensure that they can work and innovate with confidence in privacy by design practices.
Across our ICO tech future reports on biometrics, neurotechnologies and genomics it has become clear that there is also a need for a better understanding what exactly is health information under the UK GDPR. Our guidance on health data and its use in the workplace provides some of our most recent thinking in this area. We are keen to build upon this and will be reviewing our guidance relating to health data to ensure it provides useful examples that reflect the rapidly shifting and complex context created by broader emerging technologies.
We will also continue to work with stakeholders and others to explain the importance of privacy by design and compliant use of personal information. We may also consider forums for key stakeholders to discuss emerging techniques on appropriate data sharing or anonymisation techniques for genomic information.
We also want to hear from organisations with an interest in direct-to-consumer genomic services and services linked to polygenic risk scoring. We are particularly interested in views on the potential creation and development of standards in this area as well as those who may be interested in working with our Regulatory Sandbox to embed privacy forward practices in uses of genomic information.
In the longer term, we will continue to monitor and call out developments in this area through our Tech Horizons report and set out future programs of work in that document. We also want to continue to work with critical stakeholders. We want to hear from organisations who are working in this sector, whether it is in the development of novel or advanced uses of genomic information, their deployment or through thinking about their implications in a policy based or regulatory context. We would very much like to hear from you as we continue to develop our knowledge and thinking in this area. You can contact us here: [email protected].