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Delivering the NHS-embedded Generation Study

Newborn baby being kissed by mother and yawning

Our engagement so far

We are committed to involving a wide range of people across the Newborn Genomes Programme so that we can understand their ambitions, questions, and concerns about the Generation Study.

We are doing this through a range of approaches, including user research to co-design our study and develop our materials collaboratively, discussing our work with different communities, and using public dialogue and engagement methods to explore specific topics or questions.

Exploring issues through public dialogue

Public dialogue on the implications of whole genome sequencing for newborns

In 2021, Genomics England and the UK National Screening Committee commissioned a public dialogue to explore the implications of whole genome sequencing for newborns. A diverse group of 130 members of the public took part – including people with genetic conditions, new or expectant parents, people from minoritised backgrounds, and young adults. A report and  recording of the dialogue are available.

The dialogue indicated broad but conditional support for the study. Participants expect us to involve the public meaningfully in our planning, and make sure that the right resources, investment, and safeguards are in place before the study begins.

Co-designing our study

User design researchers in our team have worked closely with parents and expectant parents to design the Generation Study. This includes frequent interviews with small groups of parents to focus on specific aspects of our study – for example, its consent model. We have also worked with with parents to develop participant information materials for our study, so that we can ensure that those materials take into account their views and lived experiences. This co-design work was integral to us receiving Health Research Authority approval to run our study.

We also worked with Involve to develop a set of principles to guide decision-making on the conditions our study will look for in the babies who take part. Through co-design workshops with members of the public, people with experience of rare conditions, healthcare professionals, and researchers, and an open public survey, a consensus was reached on four principles. For more information, see the ‘How we choose conditions’ area.

Working with minoritised groups

In July 2022, we carried out user research with The Motherhood Group to understand 37 Black mothers’ views around our study. Participants made a series of recommendations set out in a report by The Motherhood Group, including encouraging us to explore outreach events in communities, and to co-design study materials with people who understand the context of minoritised communities, such as grassroots groups. They also urged us to carry out further engagement research to understand cultural barriers to participation among Black communities.

Using dialogue methodology, we focused further on the views and concerns of minoritised communities in early 2023, when we commissioned Basis Social to interview and run workshops with 25 ethnic minority community leaders to better understand how to design and communicate the Generation Study inclusively.

Leaders’ contributions enable us to begin to understand potential participation barriers for the minoritised communities they represent. Our aim is to work with them, and their communities, further when recruitment to the Generation Study begins.

Timescales for the dialogue meant that it was limited to engaging with leaders from 5 communities (Black African, Black Caribbean, Indian, Pakistani, and Gypsy, Roma and Traveller). However, the dialogue gives us scope to continue these conversations, using similar methods, with other community leaders in the future.

A report of the dialogue provides further information on leaders’ views.

Establishing a public standing group

We are establishing a public standing group. Members will include people who took part in the 2021 dialogue on the implications of whole genome sequencing for newborns; and the 2023 dialogue exploring discovery research with newborns’ genomes.

The Public Standing Group was piloted between January and March 2023. During the pilot, the 18 members (all of whom took part in the 2021 dialogue) gave their views on how the Newborn Genomes Programme should communicate with families who participate in the Generation Study. A summary evaluation of the pilot is available to download.

The group’s contributions were novel and informative, and as a result we invested in running the group for a further year. The group is due to meet in 2024and will mainly focus on the potential risks, benefits, and broader implications of storing a baby’s genome over their lifetime. Further updates will be added to this page once the group has its first meeting.

Interviewing experts

We have interviewed, and met with, a number of individuals and organisations with expertise across neonatal, genomic, and maternal healthcare – as well as people with lived experience of a rare condition, parents, and members of the public through the dialogues highlighted above. Through working with these groups, we have been able to co-design the Generation Study’s delivery to ensure that the study is delivered with the interests and views of a wide range of people in mind.

Further information

If you would like any other information about this engagement project or any other aspect of the Newborn Genomes Programme, please email us.

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