Our response to the ‘Genomics Beyond Healthcare’ report

The Government Office for Science has published a paper on Genomics Beyond Healthcare, which is deliberately provocative, in that it is seeking to provoke debate on a range of topics of how genomics could be used in the future, beyond its current applications in healthcare or proven applications in other fields.

At Genomics England, as listeners to our The G Word podcast will be familiar, we welcome debate on all aspects of genomics as it, along with associated technologies, moves more to the mainstream of healthcare, enabling more personalised and predictive insights about our wellness and health.

However, most of the topics and possibilities flagged in Genomics Beyond Healthcare are deliberately being highlighted before they have been validated scientifically, proven at the level of engineering or product, or brought into real world use.

By contrast, at Genomics England, we deal with genomics as applied today, and as applied in healthcare. The title of the report is a hint that it is addressing subjects that we at Genomics England do not engage with.

Nonetheless, we do understand that for those interested in genomics, and especially those who have donated their genomic data to scientific research (such as our 100k Participants, or those NHS Genomic Medicine Service patients who opt into taking part in research), these ideas can be deeply unsettling. We therefore want to reassure all of our current and future participants that their data was not included in any of the desk research for the Beyond Healthcare report and will not be used in such a way. Neither the Government Office for Science or any other group has requested access to our datasets.

We are the guardians of the healthcare and genomic data of over 100,000 people for the purposes of healthcare delivery and research, and we take that responsibility, and that clarity of focus, extremely seriously.

Part of that is about privacy: we keep all the data in a secure Trusted Research Environment, it is de-identified, and only made accessible to ethics-approved researchers who must persuade our Access Review Committee (which includes participants, and is independent of Genomics England) that they are working on topics that will benefit patients and participants.

Another part of that is the scope of research that can be done in our environment. Participants signed up for their data to be used in connection with their reason for joining the 100,000 Genomes Project, i.e. for healthcare research. It would go beyond the scope of our authority to use that data, or allow it to be used, for any other purpose.

Genomics England remains committed to the fundamental principle of only ever using personal information for the benefits of research and clinical care.

Our mission is to continue our decade-long journey of using DNA data and associated clinical data responsibly to transform healthcare and accelerate carefully vetted and approved medical research – whilst keeping data security at the forefront of everything we do. This has seen us make significant contributions in a number of areas, such as cancers and rare diseases.

At Genomics England, dialogue with patients and participants has been an absolute priority, which has informed and directed our approach throughout the organisation’s lifetime. And, the Genomics Beyond Healthcare report serves as an important reminder of the importance of dialogue-based approaches to agreeing acceptable future uses of genomics.

In conclusion, we value and respect the choices our participants have made. Their anonymised data is held securely and in the strictest of confidence and will only ever be used as they themselves determine. After all, it’s not our data; our role is to look after it on our participants’ behalf.