Table 5

Health professionals’ views/recommendations for content of training for non-genetic clinicians

Content topicIllustrative quote
Basic genetics All doctors need to be trained in the basics of genetics (Participant 11, non-genetic clinician)
Guidance regarding who should be offered whole genome sequencing I think we should, we need to have guidelines as to who should be the right candidate and as long as we have, we know that, then I think any professional would be able with the requisite training and who’s informed about the indications, but(…) then yes they should be able to offer it. (Participant 15, non-genetic clinician)
Limitations/process/managing patients expectations“So I think it’s essential that you understand the process, you understand the limitations… you have to give them honest expectations of process. And I think that’s your own responsibility to try and understand the science of it. So yeah I think that’s the most important thing not to give people false hope, not selling this as some magic new technology to give the answer to a problem. And the difficulty of interpretation and just why it takes so much time.” (Participant 18, non-genetic clinician)
Build confidence in ability to answer patients’ questions“if you are not confident you cannot discuss genetic, because parents will ask questions. If you don’t know the answer, then not going to work. You have to be confident when you have these discussions with parents I think.” (Participant 13, genetic clinician)
Admit if don’t know answers to patients’ questions“The offering it to them, if you’re not sure of the answer tell them that you will find out, don’t make it up.” (Participant 21, non-genetic clinician)
Emphasise patient has the option to decline“I think what’s happening also sometimes, when a consultant offers something to the patient, whatever it is, the patients are very keen to say yes because it’s their specialist telling them something and rightly they think it’s an important thing, but they don’t always know that they have the right or the option to actually refuse it. So just to stress to the consultant that they have to make that option very clear. This is a great test which I agree with but “You don’t have to take part” usually is left out because we don’t have time to do that. And I would love a little bit less of “Great” and a little bit more of “You have the option of not taking part”.” (Participant 7, consenter)
Allow adequate time to inform patients properly and to make their decision“what we offer them has to be explained properly so they can make an informed consent and not using that to our advantage, just to get someone to consent into a study… What we’re offering, we think it’s this and that, and that, make it very clear, and let them make the informed consent and to take the decision in their time. Some people might need a little bit more time than others…” (Participant 7, consenter)
How to understand/deal with a genetics report“How do you annotate a variant? What does it mean if it’s a class one, two, three, four, five, and how do you interpret that?(…)So I think these are things that just need to be clear to everybody how to understand a genetic report, what does make a class three, class four, whatever, but I think that’s any clinician though.” (Participant 11, non-genetic clinician)