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. 2024 Jun 5;15:1401705. doi: 10.3389/fgene.2024.1401705

TABLE 5.

Awareness, knowledge, and educational needs.

Quote number Illustrative quote
Awareness of national pES systems
Q1 “I’m a geneticist, so I think I get it fed to me from various different resources, and we’re constantly in liaison with [the testing laboratory]. I’m not sure that other fetal medicine teams that are not the larger ones, or antenatal teams, know where to access that information.” Professional 41, Clinical geneticist
Q2 “I do think that educational MDTs about sharing interesting cases, sharing cases where there’s maybe been challenges is incredibly useful, because then you get that sharing of knowledge across the whole system, rather than only the cases that you see and I think that will be an advantage for everyone.” - Professional 29, Clinical scientist
Q3 “People presented evidence at that meeting and then it was discussed and it was agreed that we would change the criteria. And I think that’s really good, it comes across as much more democratic than, you know, a group of people saying this is what will be. And I think it gave people a forum in which to discuss those things.”–Professional 1, Clinical geneticist
Knowledge and understanding of the pES EC
Q4 “Part of the reason we’ve been so careful to involve the genetics department is to avoid getting ourselves into the situation of promising the test and then having to weigh back a week later because we get told actually no this baby doesn’t meet the criteria to offer it.” - Professional 13, FM consultant
Q5 “So, there is a huge amount of variability between specialists, depending on the specialty, and which hospital they might work in, and their exposure to genomics as to how good they are at knowing about the national test directory…I think the tertiary centres, which I think are more specialist, have grasped onto those much better. But there still seems like a huge gap between different hospitals and their ability to understand mainstream genomics.” - Professional 41, Clinical geneticist
Education and training needs to support pES service delivery
Q6 “I think there’s a huge amount of change that’s happened in a very short space of time and I think genetics will become part of mainstream medicine, it’s inevitable but I think a lot of the work around the education, the training of health professionals has kind of lagged behind a little bit”. - Professional 51, Genetic counsellor
Q7 “I thought it was very interesting in the year that all the NHS education [2.15] were being thrown at doctors, genomic medicine was not one of the top five priorities to teach medical students that were announced that year and that seemed to me to be a little bit bizarre.” - Professional 1, Clinical geneticist
Q8 “I don't really understand why there is a drive for these specialities to become geneticists and I don't see how as much as training and education you want to put in place, I don't see how they can get the expertise that we’ve been building on for the last 20, 30, 40 years…I think there are limitations in terms of what mainstream clinicians can do and can’t do.” - Professional 54, Clinical geneticist
Q9 Some of us have got a better handle on those issues and how to talk about them that can come up, the thing is with those issues–they’re not so different thematically to the issues that might come up with microarray–they’re all on a similar theme and so, you know, if you’re consenting people properly for doing a microarray, it’s not such a massive leap to consenting them for an R21 either. - Professional 25, FM consultant
Q10 “I would never be able to see an abnormal result and say–or I don’t think I would be, unless it’s something like a condition that’s very well known, but I’d never be able to counsel what that genetic condition is, what that means to the baby, what the options are and things like that.” - Professional 36, FM Consultant
Q11 “I think even the fetal medicine consultants are reluctant [to take consent] …I’m the midwife that does the consent for the exome…some of the consultants are not having to do it because they don't want to do it within their clinics, and they feel it’s outside of their norm. So, yeah, they rely on me.”–Professional 26, FM midwife
Q12 “We did a series of repeated Teams sessions where we not only talked about who was eligible for the test, what the test did, but how to talk to patients about it and talk about some of the results that we’d started to see coming through.But we haven’t really met with any great enthusiasm for people to take that up. And I think that comes from their lack of time, you know, and the steep learning curve that it would require and, yeah, just sort of general fear I think.” - Professional 17, Genetic counsellor
Q13 Locally I think we have a particular problem in that we have several fetal medicine units in our region and only two consultants that are specialising in prenatal genetics. So, you know, just spreading ourselves very thinly. - Professional 1, Clinical geneticist