IBD genetic feedback: A conversation between participants and researchers.

The workshop was facilitated by HVM’s Henrietta, Suzannah, Hally and Jamie, pictured here alongside attendees and organisers at Hinxton Hall Conference Centre, on the Wellcome Genome Campus.

In November last year, HVM travelled to the Wellcome Genome Campus in Cambridgeshire to facilitate a conversation between participants and researchers who are involved with and interested in the NIHR IBD BioResource. The workshop, which the IBD BioResource jointly organised with teams at Wellcome Connecting Science and the Sanger Institute, brought together 15 IBD BioResource participants, 6 gastroenterologists and 3 genetics researchers. Their discussions focussed on how the NIHR IBD BioResource might implement a helpful and reassuring process for sharing genetic feedback related to additional findings with the study participants who have opted in to receive this.

The workshop, which HVM also designed and reported on, engaged with this question in the context of IBD research by drawing on patient, clinical and scientific experiences, as well as learning from other projects such as the Genomics England 100,000 Genomes project. We heard about the importance of starting the process of receiving additional findings with re-consent, as participants may well have forgotten they opted-in to receive them. For the feedback itself, attendees emphasised the need for careful communication about conditions of particular interest to people with IBD, such as bowel cancer; and described the value of a tailored approach, such as choosing when to receive feedback, and which genes or conditions to focus on. Feedback, they suggested, should be supported by a range of tools to make the information accessible, and the process for feedback and follow-up should be timely and supported, to avoid prolonged anxiety.

You can read more key findings from these discussions in our report on the workshop, available as an executive summary here, and in full in our reports section and here.