Overview

Patients are at the heart of our mission. WP5 ensures that genomic medicine is developed ethically and transparently by integrating the voices of patients and the public.

Key Objectives

• PPIE Integration: Embedding patient perspectives into high-level regulatory decision-making.
• Clear Communication: Developing utility-focused patient information leaflets (PILs) for genomic tests.
• Ethical Oversight: Evaluating the impact of direct-to-consumer (DTC) testing on patients.

Featured Resources

• NHS England’s Genomics Education Programme
• Consistency and clarity of pharmacogenomic guidance in UK medicine patient information leaflets: A cross‐sectional analysis – Narlawar – British Journal of Clinical Pharmacology – Wiley Online Library

Publication News

We are pleased to share the publication of our paper, “Consistency and clarity of pharmacogenomic guidance in UK medicine patient information leaflets: A cross-sectional analysis,” in the British Journal of Clinical Pharmacology.

There is a lack of consistency around when and how pharmacogenomic information makes its way into a patient information leaflet.  We highlight a need to define clear criteria for when PGx content should appear in patient-facing documents and how it should be phrased to support understanding and safe use of medicines.  We examine how Pharmacogenomic (PGx) guidance is presented in UK Patient Information Leaflets (PIL) and highlight variation in the consistency and clarity of the information provided to patients. Additionally, this paper identifies the large discrepancy and variability in the readability of PGx information when compared to the rest of the PIL.

As pharmacogenomics moves closer to front-line care, it is essential that both physicians and patients are adequately informed when making decisions about their health. This paper helps evaluate the current landscape and provides indications for where regulatory work is needed.
https://doi.org/10.1002/bcp.70521

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