With support from UK Research and Innovation’s Sciencewise programme, Genomics England and the UK National Screening Committee have started an important public dialogue to explore public views on the implications of whole genome sequencing for newborn screening. Through deliberative online workshops, a diverse group of participants from across the UK will share their priorities, aspirations and concerns regarding the potential use of this technology in newborn screening.
Why a public dialogue now?
In September 2020, the Government published a 10-year strategy to create the most advanced genomic healthcare system in the world, underpinned by the latest scientific advances, to deliver better health outcomes at lower cost. A priority of the strategy is exploring the potential to prevent disease through the expansion of genomic screening in early life.
In addition, the UK National Screening Committee recently reported that advances in genomic technologies present exciting and potentially effective developments for screening programmes.
Both reports recognise that there are many societal, ethical, and logistical factors that will need consideration before genomic technologies are introduced. This requires a public conversation to understand societal views, hopes, concerns and aspirations for these technologies.
How will the dialogue be structured?
The dialogue process is being designed and managed by Hopkins Van Mil, following a mini competition run through the Sciencewise framework. The dialogue is being independently evaluated by URSUS Consulting, and recruitment of participants is being carried out by Roots Research.
The project will involve recruiting and facilitating an inclusive dialogue with approximately 140 members of the public. There will be a core group that is broadly reflective of the UK population, and several smaller groups comprising people who are likely to have specific views, for instance in terms of impacts arising from the technology: pregnant women, their partners and new parents; BAME groups; people with genetic conditions and their family members; and young adults.
Participants will take part in five virtual workshops spread over a number of weeks, with reflective tasks for participants to complete in their own time. They will receive any necessary support to take part digitally, and the dialogue will be informed by expert input to ensure information conveyed to the public participants is accurate, comprehensive and as balanced as possible.
The objectives of the dialogue include:
- Understanding participant views, concerns and aspirations around the use of whole genome sequencing in newborn screening, and the values and principles that inform those views.
- Understanding how participants perceive potential harms and deal with uncertainty, and how they trade these off against potential benefits for various affected parties, such as the child, the parents, the wider family, the NHS and society more broadly.
- Discussing the safeguards that participants think should be in place to help minimise harm and maximise benefits.
- Gaining insight into what kinds of support and information various groups would find useful or critical to help guide choices.
- Exploring what expectations and understanding are the same, and what are different, between the public, and clinician, academic, industry and other stakeholder groups.
The project is guided by an independent oversight group which includes people with expertise in clinical genomics, screening midwifery, genetic counselling, social science and stakeholder engagement, as well as representatives of charities and patient groups. The issues to be taken into the public dialogue will be shaped through interviews and conversations with a range of stakeholders.
A report of the findings will be delivered in April 2021.
How will the outputs be used?
The outputs will help shape a proposed public research programme that will establish the effectiveness, feasibility and acceptability of whole genome sequencing in newborn screening compared to current newborn screening practice.
The outputs will also inform the development of UK policies on newborn screening in the context of advancing genomic technology and knowledge.
Find out more
For further information on the dialogue project, please contact:
Simon Wilde, Genomics England Simon.Wilde@genomicsengland.co.uk
Catherine Joynson, UK National Screening Committee Catherine.firstname.lastname@example.org
Philippa Lang, UKRI Philippa.Lang@ukri.org