Text: This focus group was set up as part of our ongoing participant engagement process, listening and involving existing #genomes 100k participant to shape future recruitment to the project.
Professor Frances Flinter: This is a very exciting and very challenging programme, it enables us to harness the fantastic advances that there have been in our scientific ability to sequence large amounts of DNA and we're now facing the even greater challenges of trying to interpret all the sequence data that's been generated in order to look for alterations in the DNA that will help us understand the cause of conditions in various patients who've been recruited to the project.
Text: Why is it important to engage with participants?
Frances: Our process for consenting patients has been evolving over the last couple of years and is constantly changing and it's very helpful to have feedback from patients to find out how did they find it? What did it feel like when they were first approached and offered recruitment to the project? Do they feel that they had easy access to the sort of information that they needed in order to make a decision? Did they have plenty of opportunities to ask questions afterwards? And have we managed their expectations in a realistic way? So that they understand why it might be a very long time before they get any results.
Text: What the participants said...
Genomes project participant: Well really because I was very, very interested in in you know helping in some way maybe future people that have similar conditions to what I've got. Also I've got a concern within the family, I've got a brother and sister that at the moment aren't presenting in any way as having anything but they they could have so it may well, they are not involved in the project at all, but it might inform them. And we've all got children, I've got a daughter, so I think you know for future generations as well not just within my family but perhaps other other people's families that have similar conditions. And also my wife is obviously very anxious about my health and potentially her daughter, our daughter, so I think it would be really interesting to be involved and, and you know hopefully there can be positive outcomes from it.
Genomes project participant: The benefit to others, the benefit to myself and helping to be more clear in what treatments that may be available to me further down the line for anything that may be detected or diagnosed. And I'm also curious about the project, I've been aware of genome testing for quite some time but I've never really looked into it, so when it came up as an option I was quite curious and inquisitive. So I had a sister who was diagnosed with cancer and the diagnosis came late and it was too late to treat her so that's sort of a lesson for me that you know it's better to know than not to know.
Genomes project participant: I joined a programme because my son, who's 12 years old, has a number of health issues that have really not been resolved. And following a number of tests, I was invited to join the project and I'm certainly very interested to know whether there is any genetic connection and I think generally I'm just interested in in the scope of the project.
Genomes project participant: Well wouldn't it be lovely to find some results that make a difference in the long run where we can predict and avoid sicknesses and illnesses.
Text: Did you have any concerns?
Genomes project participant: I suppose the main concern I had was what happens with this information and whether it could adversely affect myself, my son or my family in some other way in the future, in terms of their ability to be insured for example. But I've been reassured that that's that seems to have been anticipated and I've got confidence in the project and the staff running it, so we go from there.
Genomes project participant: The concerns were to remain anonymous apart from that no concerns whatsoever, I find it an exciting project to be involved with and I just think we had to put trust in the personnel involved to make sure that we do remain anonymous.
Text: How was your experience today?
Genomes project participant: What I found was really, really reassuring was to just be around a table meeting other people that are invovled in the project and, hearing a little bit about their stories. I mean nobody really revealed too much, but people did go into a little bit of detail about what their experiences have been and what their concerns are. And it's quite nice to hear other people's concerns and, in a way, feel like that most of us have similar concerns and there's reassurance in realising that there are other people feeling similarly about the different issues that you might get when you're involved or when you've got a medical condition that no one can really explain.
Genomes project participant: It was interesting to meet the other patients and to hear why they're here. And people have come for a number of different reasons and I think that's really interesting. And I think what I also learnt today was just how huge this is and its potential, hopefully, to improve people's lives, so I'm happy to be part of it.
Text: Thank you to all those who took part in the August focus group. Contact the team if you would also like to be involved in our future events.