Winter Consultation 2022
What was discussed?
On 19 January 2022 our Sounding Board met virtually via Zoom and were consulted on the following topics:
- A proposal for an Incidental Findings Policy for the All Wales Medical Genomics Service (AWMGS)
- Genomics Delivery Plan for Wales
- Engagement plans (session led by Wales Gene Park)
Consultation 1: A Proposal for an Incidental Findings Policy for the All Wales Medical Genomics Service (AWMGS)
Session Leads: Angharad Williams (Clinical Scientist, AWMGS); Ollie Murch (Consultant, AWMGS)
Scribes: Trainee Clinical Scientists (AWMGS): Monika Domeradzka, Lucy Lewis, Hannah Smallridge
Incidental findings are those that occur during genetic testing which do not explain the patients’ current symptoms, but may have important implications for the patient and/or the wider family. As whole genome and exome sequencing (WGS, WES) becomes more prevalent in NHS Wales’ clinical care pathways, so too will the frequency of incidental findings, hence the need for a standardised policy. There are three suggested proposals:
- Analyse and report all findings which are seen to be ‘actionable’
- Analyse and report a set list of gene changes
- Do not analyse or report changes not related to the reason for testing
Cross-cutting themes: Summary of Group Discussions
- Patient-centred Decision Making, empowering the patient throughout the testing process, stressing the importance of providing information, for instance wider family implications, early enough in treatment pathways to facilitate these decisions
- Actionable vs non-actionable findings, you were supportive of disclosing findings which are clinically actionable (for instance leading to a defined treatment pathway with positive prognosis), however ‘variants of uncertain significance’ which are not clinically actionable could create significant anxiety for patients
- Breadth of testing offered; you felt that testing should be done against a clinically actionable ‘set-list’ of variants, you raised concern around the resource implications of a broader analysis of all variants
- Consent & Ethics; you stressed the paramount importance which should be placed on informed consent and that any proposed consent form or other information mentioned would need to go through a rigorous ethical approval process
- Information Governance; you strongly indicated that, in addition to ethical considerations, how the data (test results) would be handled would need to be addressed, providing assurances to protect results from accidental disclosure. Where testing involves children you firmly believed that these should be made available to them when they turn 18, if they request to see them
Your impact
Hear from Angharad Williams as she gives feedback on the session, and how lessons learned will be used to further service developments in this area:
Consultation 2: Genomics Delivery Plan for Wales
Session Lead: Chris Newbrook (Head of Health Science, Welsh Government)
Following publication of Genome UK in September 2020, the ten-year UK strategy for the future of genomics in healthcare, two key pieces of work are taking place; a UK-wide joint principles document detailing which areas will benefit from UK collaboration to support the delivery of Genome UK; and each nation is developing their local implementation of genomics. Ministerial approval has recently been given for the development of the Genomics Delivery Plan for Wales. The background, approach and timelines for this development were presented as an introduction. To facilitate discussions you were then broken into breakout groups and asked a series of questions based on the Sounding Board’s previous contribution to Genomics in Wales: Our Five Year Ambition (the basis for the development of the Delivery Plan).
General points
- In terms of the Delivery Plan document itself you made the following suggestions
- Ensure document is acronym free so accessible to members of the public, this would also help to protect genomics from misinformation
- Use of footnotes to reference explanatory material, rather than taking up space in the main document text
- Workforce involvement and engagement: all agreed that this is a pivotal cornerstone of the work
- Patient focused prioritisation and involvement: these should be emphasised as areas where we add real value
- Return on Investment/Transparency and Assurance: Welsh people must benefit from any investments either part or wholly funded by Welsh Government
- Equality & Diversity: the need to be fully inclusive for all people regardless of physical, sensory or mental impairment was stressed
- Terminology: you stressed the importance of plain, easily understandable language in all public-facing correspondence, keeping acronyms to a minimum. You favoured using terms such as involvement and/or engagement as opposed to co-production
- Genomics Delivery Plan for Wales: need to map PPIE elements across to those outlined in Genome UK, linking with some deliverables from the strategy you felt we need to be clear what we intend to do with the engagement, what is it done for? You noted that good PPI and good engagement also attracts health professionals and helps with the retention of genomics so was vital for inclusion in this delivery plan.
Engagement Plans
Session Leads: Angela Burgess, Rhian Morgan (Education & Engagement Team, Wales Gene Park) The work of the Gene Park team and their engagement plans and priorities were highlighted. The following agreed actions came out of these discussions
- Wales Gene Park to provide you with a ‘feedback’ pack for you to work through and feedback by 11th March 2022, with the following asks
- Spreading the word of genomics, and genomics-related events, to friends and family
- Specific feedback on HEE’s Genomics factsheets, how can these be adapted for wider public consumption
- Noted that it is difficult for Wales Gene Park to reach GP surgeries/medical centres – you were asked if you could help with contact and information flow for your local GP
- It was noted that pharmacies might be a better way of disseminating information than GPs, alongside prominent display boards in outpatient departments, charities, support/advocacy groups, etc. A number of you volunteered to offer to help Gene Park with dissemination of information through your networks
- Your suggestions for the type of events which might increase engagement included
- Podcasts/storytelling shows
- Presence at larger events such as Royal Welsh Show
- Specific events, such as Techniquest After Hours
- Creation of a new stand to showcase careers in genomics
- Expansion of Genomics Roadshows to include public-facing events, as well as health-professional events
Programme Updates
- The following updates from the Programme Office were also given during the day
- Meeting outputs: you were happy with the format of the report, however your preference was for the shorter, higher level summary videos rather than a longer, detailed piece. In the future, the aim was for these summaries/videos to be produced by one or two volunteers from the Sounding Board to sum up the day. You were happy with the summary format on the webpage.
- Equality & Diversity: you fed back that improving the diversity of what we offer by engaging with harder to reach communities (such as those based on gender (specifically men), age (specifically younger and working age people), ethnic minorities should be a top priority when recruiting future cohorts
- Genomics Delivery Plan for Wales: it was agreed to hold a dedicated session in the middle of February to discuss and develop the PPI aspects. Wales has signed up to the Genome UK strategy and this delivery plan will form our country-specific approach to achieving the aims set out in this wider strategy
