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Freshfields TQ

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| 3 minutes read

UK genomics: ABPI makes recommendations to navigate the rocky road ahead

The Association of the British Pharmaceutical Industry (ABPI) has published its analysis of the UK’s genomics offering, following the publication of NHS England’s first ever Genomics Strategy in October (for our further analysis of that development see here). The Report, “Harnessing the UK’s genomics expertise to improve patient outcomes”, critically assesses NHS England’s recent strategy and the UK’s genomics landscape more generally.

According to the ABPI, while the UK should be well-positioned to become a world leader in genomics given its flagship work and depth and breadth of experience, the road ahead is “rocky”. The ABPI is concerned that current challenges in the UK health system pose a threat to the UK’s ability to fully harness its genomic assets.

While the recent NHS England and UK Government Genomic Strategy is a positive step, there are “persistent problems” including inconsistent patient access to genomic testing dependent on geography and an outdated administration of testing and reporting results.

The ABPI makes a number of recommendations to address these risks. It makes 10 specific recommendations, which can be grouped into four themes:

  1. improvements in genomic testing, in particular in the infrastructure for implantation of research and development and clinical application;
  2. improvements and investments to the workforce;
  3. better use of health data (including in relation to clinical trials); and
  4. closer partnerships (e.g. with industry).

1. Genomic testing

The ABPI believes that the UK is failing to capitalise on its strong genomics foundations, and is “trailing behind” other European countries such as Sweden and Germany, for example with respect to access to biomarker tests. The Report refers to research indicating that access to biomarker testing in the UK has “much room for improvement” in terms of variability in speed and access to genomic testing.

The report describes major technical and operational challenges and deficiencies in the current clinical genomics landscape, including long turnaround times and poor digital infrastructure to enable genetic test results to be linked to electronic health records. These are leading to high test failure rates and long turnaround times for patients.

The Report recommends urgent attention to enable harmonisation and standardising of processes, referral pathways and timelines for genomic testing, with progress to be tracked via the publication of annual reports on performance metrics and user feedback.

2. Workforce

The ABPI considers it vital that the UK health systems grow the genomic medicine service workforce and incorporate genomics into their long term strategic workforce planning. It highlights in particular high priority skills gaps across bioinformaticians, statisticians and data analysts.

3. Data 

To facilitate the UK’s genomics offering for research and development, the ABPI highlights the need for interoperability and connectivity between research programmes and across genomic and health data assets. It also urges the government to deliver on the health data goals set out in recent strategy papers so that health datasets can be used to support genomics research and development goals.

With respect to clinical trials, the Report notes the “incredibly challenging and complicated” current system for navigating clinical trials and recruiting participants. It also comments that diversity relative to the UK population is also missing, with under-served groups poorly represented in UK datasets. This leads to disproportionate representation of certain groups in clinical trials, perpetuating inequality of access to genomic treatments and preventing research outputs from being real-world relevant.

The Report urges the government to deliver on its commitments to make participation in genomic-enabled clinical trials easier and more inclusive, and proposes a UK-wide genomic research collaborative approach.

4. Partnerships 

The Report attributes the UK’s current strong global position in genomics in part to public-private partnerships, and outlines this by reference to a number of case studies.

Overall, the ABPI recommends closer partnerships between the UK Government, industry and the NHS to solve the issues identified, “unlock the potential for genomics research” and ensure patient access to genomic testing. It recommends closer collaboration across UK government and health systems with industry and regulators, including by enhancing horizon scanning for genomics advances and technologies.

Key takeaways: 

We look forward to seeing how these recommendations are reflected by the UK government in forthcoming policy and regulation, in particular as it:

  1. looks to give more concrete shape to the five-year strategic Genomics plan recently outlined in October;
  2. moves to implement its health data strategy goals (in turn informed by Professor Goldacre’s report which pointed out the health data infrastructure, interoperability and diversity issues highlighted there, see further here and here); and
  3. turns to outline the shape of the clinical trials regulatory landscape in the UK, which is currently under consultation (see further here and here).


life sciences, data, data protection