Monday, 01 April 2019 11:40

Competency framework for consent: reviewers sought

We are inviting feedback on a new competency framework that outlines the key elements required for clinicians to seek consent for a genomic test

In collaboration with a range of healthcare professionals and organisations, the Genomics Education Programme is developing a nationally agreed, cross-professional competency framework to facilitate consent for genomic testing. We would now like to open the framework for wider consultation.

Why is a framework needed?

Building on current medical practice, genomic medicine highlights unique considerations with regards to patient consent, including addressing the needs of different family members, data sharing protocols and feedback of results.

Advances in genomic technology and its applications in clinical care have led to increased use of genomic testing across a growing number of specialties. The new NHS Genomic Medicine Service includes a National Genomic Test Directory for cancer and rare and inherited disease, which outlines the tests that will be commissioned by NHS England for more equitable access.

Later this year, whole genome sequencing will be available for certain rare disease indications and a sub-set of cancers, and will involve a ‘patient choice’ model of consent, which covers both the clinical implications of a test as well as a research offer within the clinical pathway. There is therefore a growing need to provide a framework to support the development of the workforce who will be having these conversations with patients.  

What is the framework?

This framework identifies the core competencies required to facilitate consent for genomic testing. It has been designed as a guide for best practice for healthcare professionals offering genomic testing, which may include whole genome sequencing, microarray or single gene tests for diagnostic, carrier or predictive testing purposes.

We are aware that conversations about genomic testing may vary depending on the context of the test, and be led by different individuals with varying levels of expertise in genomics. It is therefore imperative that professional judgement based on an individual’s scope of practice is considered when reflecting on these competencies.

How will this framework be used?

This framework aims to provide a comprehensive foundation for training to enable the consent conversations around genomic testing to be delivered in a safe and effective way for patients across specialties.

It will enable professional groups and clinical leaders to consider how the competencies fit within the education and training needs of their specific workforce group or specialism, and can be used as a guide for individual healthcare professionals to identify additional learning needs. This framework will also guide the development of future tools made by the GEP to support the workforce.

What input do we need?

An initial framework was developed based on existing literature and experience of the authors within the GEP. On 12 February, a one-day expert consensus meeting with healthcare professionals in various disciplines reviewed clinical scenarios in iterative rounds, mapped themes to the framework, and voted on areas of inconsistency.

Before this framework is finalised, we would like to invite NHS healthcare professionals to review the current framework and send feedback regarding overall views on the framework as well as elements that should be considered for inclusion or removal.

Please send us your feedback using this form by Friday 26th April 2019.

Acknowledgements

We would like to thank the attendees of the competency review meeting for their support in developing this framework.