Health & social care
IBD BioResource genetic feedback: a conversation between participants and researchers
Hopkins Van Mil designed, facilitated and reported on this workshop in November 2023, organised by the Wellcome Connecting Science Engagement and Society team, the Sanger Institute Human Genetics team and the NIHR IBD BioResource. 24 participants and researchers came together in Cambridgeshire to discuss how genetic feedback related to additional findings are shared with IBD BioResource participants who have opted in to receive it.
The workshop discussions bridged patient, clinical and scientific experiences, whilst providing opportunities to learn from relevant wider work such as Genomics England’s 100,000 Genomes project.
Priorities and principles for digital health innovation in South Yorkshire
Hopkins Van Mil was commissioned by the South Yorkshire Digital Health Hub to convene a Citizen’s Jury of 14 individuals from across Sheffield. The priorities which emerged from this informed the Hub’s activities and projects, including framing the first Call for Ideas, and the selection of incubator and pilot projects.
Public deliberation: research access to Newborn Genomes Programme data
Hopkins Van Mil was commissioned by Genomics England to run a public deliberation with 103 members of the public to consider the scope of discovery research with newborns’ genomic data that will be held in the National Genomic Research Library (NGRL).
Think ethics: a public dialogue on research ethics review
An HVM report commissioned by the Health Research Authority. The findings will be used to inform the Think Ethics programme.
Pandemic ethics: two public dialogues
In 2021 the UK Pandemic Ethics Accelerator, led by the University of Edinburgh, and the Nuffield Council on Bioethics (NCOB) commissioned HVM to run a public dialogue to consider public views on the ethical and societal considerations of Covid-19. The work was funded by UK Research and Innovation (UKRI).
The findings of this first dialogue demonstrate key public considerations such as:
How to heal the social divisions and re-balance the inequalities that Covid-19 has exposed and exacerbated
The need to working to build trust and transparency into government policies and actions including greater collaboration amongst the home nations
Meaningful public involvement built into policy making to create a society resilient in the face of future pandemics.
In 2022 the same team: UK Pandemic Ethics Accelerator and the Nuffield Council on Bioethics led by the University of Edinburgh, commissioned HVM to run a second public dialogue. This time participants’ thoughts were focused on their views on the ethics of a pandemic during the period July 2021 to May 2022 as Covid-19 restrictions eased, changed and were lifted entirely. Key considerations included:
What support is needed across society to recover from the trauma of Covid-19, particularly for those who have suffered traumatic loss, and children and young people
What transparency in government decision making, policy making and communications should be like in a pandemic
How to prepare populations for a future pandemic including trusted sources of information, evidence and data
Who should deliver trusted communications on future pandemics and how.
As in the previous dialogue, solidarity, togetherness and the common good are seen by participants as very important in a future with pandemics. The ethics of a caring and compassionate society are highlighted by participants and as such they prioritise collective over individual needs in a pandemic.
The implications of whole genome sequencing for newborn screening
A public dialogue for Genomics England and the UK National Screening Committee co-funded by the UKRI programme Sciencewise. The technical annex is available here.
Putting Good into Practice
A Sciencewise public dialogue on making public benefit assessments when using health and care data for The National Data Guardian and Understanding Patient Data.
The technical annex provides the design and stimulus materials used in the dialogue.
Foundations of Fairness: views on uses of data held by the NHS
A mixed methods public engagement programme with integrated Citizens’ Juries for NHS England and Understanding Patient Data with the Ada Lovelace Institute and the Office for Life Sciences.
