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Submission to the House of Lords Science and Technology Committee

Innovation in the NHS – Personalised Medicine and AI

Executive Summary

This submission presents findings from qualitative empirical research examining the ethical, practical, and system-level challenges of implementing genomic medicine within the NHS. The study draws on 24 in-depth interviews with UK experts across clinical genetics/genomics, genomic science, policy and bioethics.

While the UK has established global leadership in genomic medicine through initiatives such as Genome UK, Genomics England and the NHS Genomic Medicine Service, the findings indicate that the primary barriers to implementation are not technological but related to system design, governance, workforce capacity, and public trust.

The evidence demonstrates that successful implementation will require a coordinated, system wide approach that integrates governance, infrastructure, workforce development, and public engagement, led by experts from different disciplines with recognition that a one-size approach will not accommodate the different uses of and contexts for genomic data within medicine.

This submission reaches the following conclusions:

Implementation, not technology, is the critical challenge. The primary barriers to realising the benefits of genomic medicine within the NHS are organisational, structural and workforce-related rather than technological, requiring sustained attention to system design, governance and service readiness.
Public trust and governance remain foundational to success. Effective, transparent governance frameworks, alongside meaningful public and community engagement, are essential to maintaining trust and legitimacy, particularly as genomic data use expands beyond specialist settings into mainstream care and population health.
There is a real risk of exacerbating health inequalities. Without deliberate action, genomic medicine may disproportionately benefit some populations while excluding others, especially given current limitations in data representativeness, variability in service capacity and uneven access across localities.
Policy ambition must be matched with clinical evidence and system capacity. Accelerating the deployment of genomic medicine ahead of evidential maturity, workforce capability, and infrastructure readiness risks unintended harms, ethical blind spots and inefficient use of NHS resources.
A differentiated, system-wide approach is required. Genomic medicine encompasses diverse applications across specialist care, primary care and population health, each requiring context specific evidence, leadership and evaluation. A single uniform model of implementation is neither realistic nor appropriate.