Autumn Consultation 2023

Autumn Consultation 2023

From 19th– 20th October, our Sounding board met for their first hybrid consultation, with a number of members meeting face-to-face in Cardiff and others joining virtually via Zoom.

What was discussed?

On the first day, with Board representatives Clare and Guy gave an interactive presentation on the latest developments at this level, alongside key programme updates.

The Sounding Board members were then consulted on the following topics:

  • The proposed use of whole genome sequencing for patients with mental health disorders
  • Developing Wales’ Genomics Research Strategy

Consultation 1: Proposed Whole Genome Sequencing (WGS) in patients with mental health disorders

Session Lead | Donna Duffin (All Wales Medical Genomics Service)

Proposals for a research study to carry out WGS in patients with mental health disorders, such as schizophrenia, were outlined. Members provided the following answers to these four questions:

1) Do you feel that there were any additional/alternative questions which should be asked/investigated?

 Members felt that the following should be considered:
  • The impact this testing/research on wider family members
  • Effect of environmental triggers on genetically predisposed mental health conditions
  • The impact of participating in the study on the individuals’ life in terms of gaining employment and access to health insurance or a mortgage
  • Data collected from the study should be secure and only accessed with the correct permissions and consent in place.
  • It is important to consider how representative of demographics a small sample size of 200 is. 
 

2) What concerns do you have about the implications of the proposal for future NHS patients?

  • The increased risk presented by being pre-disposed to a condition could be distressing to both the patient and family due to the stigma associated with mental health conditions
  • Ensure that all participants are appropriately supported either via face to face or online.
  • Clear guidelines on data sharing needed to address concerns around the impact this could have on patients’ access to life or health insurance
  • Informed consent should be routinely obtained throughout the process as things progress and change for each participant.
  • We must ensure that any approaches adopted are tailored to suit each participant individually.
  • Communication, especially whilst waiting for results, needs to be improved to help alleviate some of anxieties
 

In terms of the impact on the wider NHS you raised the following concerns:

  • We need to be clear about the how and why such data from the study would be shared with commercial entities
  • Once the general public become aware that testing/screening for these conditions is an option, it might lead to an increase of people asking their GPs for testing via the NHS.
  • Commercial entities might begin offering direct to consumer screening tests for these conditions; these may not have the same level of counselling available which could put pressure on the NHS to support.
 

3) How would you feel if you were told you were at a higher risk of schizophrenia? Would it affect your choices/would it be helpful to know what risk category you are in?

  • Some members would not want to know as they would be unsettled by the findings, whilst others would want to know if they could do something to alleviate/delay onset.
  • It would be essential to provide links to digital resources and local support groups to support
  • the participant following diagnosis
  • You felt that more needed to be done to make genetic testing more accessible and normalised.
 

4) What ways can we improve equality, diversity and inclusion for this proposal?

  • All educational material relating to this study should consider unique learning styles
  • Consider what we can do to connect with harder to reach communities; this could include reaching out via Llais, Sounding Board Members with links to diverse communities, engagement events such Genomics Cafes, Young Minds Ambassadors and charities (such as the Trussell Trust, Allen Lane Foundation, etc.)

Consultation 2: Genomics Research Strategy for Wales

Session Leads | Saskia Hagenaars & Lexy Smith (IQVIA)

The consultancy work being done by IQVIA to develop a Genomics Research Strategy for Wales was described and Sounding Board members were then split into four groups to answer the following questions:

Group 1: Should certain areas of genomics research be prioritised over others, in terms of funding or resource allocation, and why?

  • It is important to prioritise those areas which would make the biggest impact, for instance specific areas of oncology.
  • It is important to undertake a thorough GAP analysis to see what genomics research is already taking place to identify what is missing
  • Only through sharing knowledge would it become easier to distribute funding; we would need to develop mechanisms to facilitate information sharing
  • The importance of strategic partnerships, such as collaboration with pharmacology companies

Group 2: Do you agree with the recommendations and why?

  • Members agreed with all of the recommendations, providing that they are communicated in an accessible way
  • Giving consent should not be seen as a one-time event ‘for life’ but should be regularly re-visited as contexts change, with the option to withdraw be clear from the outset
  • A ‘standardised’ approach to consent would not work if we are to achieve informed consent
  • Members raised concerns regarding an individual’s capacity to understand all of the implications,
  • and that these need to be communicated clearly. This should include what happens to data
  • already in use should consent be withdrawn later

Group 3: What are the important questions to ask the public when developing a consent model, particularly with regards to implementation?

  • Need to establish public perception of consent; there is varied opinion on the difference between consent and informed consent
  • You stressed the importance of engaging with the public when developing consent forms
  • Information should be presented in a variety of ways to facilitate understanding
  • Important to indicate from the outset some key aspects following the consent process e.g. Who owns my data and/or samples? What are the assumptions you will work from if consent is given? How long will my consent last before I need to be re-consented?
  • A strategy is needed to define what we mean by key terms and outline the scope of what is being consented to, ensuring equality and diversity is appropriately recognised
  • We should aim to break down geographic barriers with equitable distribution of information.
  • We need to consider how to best present the impact of any proposals to improve patient
  • pathways; emphasising the prevention of delays or reducing waiting times
  • We need to address any issues which may arise between Wales and England, as well any
  • health inequalities that may exist in different health boards within Wales
  • We need to take into consideration the cultural impact of what we are asking consent for
  • As a result of these cultural differences, you cautioned against adopting a ‘presumed’
  • consent model
  • We need to provide for different levels of consent as some individuals may be willing to consent to part of a proposal, but not to all
  • You summarised these points by suggesting the following questions could be asked in any implemented consent model: Who will be able to access my samples/data and what are they going to do with them? How long will they be retained for and What will happen to them after my death? Will I receive counselling for results I receive?

Group 4: How should the public be consulted on strategy going forward, particularly with regards to communicating research outputs and successes?

  • Members felt that Patient advocacy and support groups, community groups and organisations, schools and universities should be consulted and material should be integrated into existing resources, such as SWAN clinics
  • Any information should be communicated in a variety of different formats including online, visual-audio, within public spaces to reach the digitally excluded, with easy-read options available, in the patients first language where possible.
  • Expectations of involvement in a study need to be clear, with information about self-referral, existing services and level of commitment included.