How do we ‘do’ consent? Clinical & research models in genomic medicine 100,000 Genomes Project and beyond

Prof Christine Patch will talk through what has been achieved in the “patient choice” process of consent developed during 100k Genomes and reflect on the challenges of creating an ethically robust research ecosystem as a routine part of clinical care.
12th August 2020

An audiene of over 60 people attended Chris's webinar, a part of the SER Seminar Series hosted remotely during Covid-19 home working.

 

Seminar summary:

promo image - how do we 'do' consent?_0.pngIn the development of the approach to consent for the 100,00 Genomes Project, the use of the words “patient choice” to describe the process of consent for both clinical care and for research is deliberate and reflects how many different meanings are attached to the word in different contexts.

Following on from the UK 100,000 Genomes Project, the creation of the NHS England Genomics Medicine service by NHS England together with Genomics England has established the principle of “patient choices”. This principle relates to both patient choice in having a diagnostic test and in agreeing to the use of their data in research. 

Whole genome sequencing has been commissioned by NHS England for clinical diagnostic use through the National Genomic Test Directory. Patients who agree to whole genome sequencing will be offered the opportunity to also agree for their data to be used within the National Genomic Research Library.

The way the patient choice model is being prepared to be put into practice has also influenced how Genomics England is working in COVID research partnerships.

In this presentation, Prof Christine Patch talks through what has been achieved so far and reflects on some of the challenges of creating an ethically robust and trusted research ecosystem as a routine part of clinical care.

Watch the full seminar here:

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Citation:

Patch C (2020). How do we ‘do’ consent? Clinical & research models in genomic medicine 100,000 Genomes Project and beyond. Invited speaker as a part of the Society and Ethics Research Seminar Webinar Series. 12 August. Online