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Table 2 Illustrative quotes

From: Exploring the acceptability of controlled human infection with SARSCoV2—a public consultation

Focus group Quote
Question 1: Should this study be done?
 FG1 I’m able to work from home, but I still feel quite helpless and I think there is quite a lot of people who would want to do something … I think it’s something that I would be interested in.
 FG2 Emphasis on this being a ground-breaking piece of research and all the people you could help, loads of emphasis on that.
 FG6 The scientists who know what they are talking about make the decision to put forward the study.
 FG6 If I knew that it’s something been robustly approved by an ethics board, I’d be fine.
 FG7 I do not think the public should be the people to decide whether it goes ahead or not, it’s for higher up I think.
Question 2: What might volunteers be particularly concerned about?
 FG3 I think I feel really anxious given what you are seeing in media everyday about the number of people who are dying and the young people that are being really unwell with it.
 FG1 I think at this point most people have accepted that most people will probably get it in the upcoming months, and I would much rather have it in a controlled environment in a hospital than be at home in isolation. And obviously if something does go wrong, they have doctors around them to care for them.
 FG1 I live with my family, like worried that I was going to pass something on to them so at least we would be in a controlled environment, I would be away from them and they would not get infected.
 FG4 I’m pretty sure that actually my mum would not let me take part in this even though I’m 32 years old. I would not have parental consent!
 FG2 I’d like to know that my employer would support me in being a part of this process.
 FG5 Is there enough space, if so, are they not taking the (hospital) beds away from the people that have got ill and have not actually voluntarily got the disease.
 FG5 I guess like those things we take for granted such as internet access, books, Netflix, but I think also just having the ability to have a bit of fresh air … I think your mental health would be seriously impacted stuck inside all day.
 FG6 You could have calls together so you can talk about the experience together to support each other mentally, psychologically.
 FG6 You could possibly have a psychologist to support how people might be feeling.
Question 3: How best can we communicate risk to potential volunteers?
 FG1 I would just be a little apprehensive and worried about maybe the cohort of 20–40, young people think that they are actually a bit invincible, and actually we know that the risk in unknown.
 FG7 I’m quite numbers driven, so I’d want to know … what are the chances of me going into intensive care … or dying.
 FG2 The fact that you are being so open and honest about the fact that this is not zero risk.
 FG3 1 in 100 or 1 in 10,000, if you could make it more relatable, maybe the chances are of being in a plane crash or getting hit by a bus.
 FG4 Be able to ask questions face-to-face with somebody, I would not just want a long information sheet.
 FG3 Maybe it’s worth gathering the positive data, how many people have had this and shown little symptoms or no symptoms and got through it and talk about the positive numbers of the effects.
 FG4 I think I would want to know if they are for everyone or if there were different numbers for my age group.
Question 4: How much financial compensation is acceptable?
 FG1 As a covering of a loss of earnings, this feels about right and it is necessary to do that because there is risk.
 FG6 I’d be like WOW that’s almost double my earnings so I’d be like yes sign me up … but then I would worry on the opposite side about who would that attract.
 FG7 My only moral concern is … you wonder if people will be doing it for the wrong reason … you want people to do this study knowing what they are going into … if they are sitting there with dollar signs in their eyes they might not listen to all the other things … they do not hear the rest of what you say, they do not hear any of the risks.
 FG4 Could it be just that when you introduce the money aspect of it, actually when you are advertising for participants … it’s not until someone has interest and they have consultation with someone that then they find out.
Question 5: What do you think about details of this study being made available to the public?
 FG2 It would be perceived in quite a positive light, that you were doing something to help the nation recover from this epidemic a lot quicker, so personally I think I see it as a more positive thing, like look at these people they are doing something really great … helping us come out of lockdown quicker.
 FG1 I think actually seeing the symptoms or the progress that people are making across the weeks might be more useful to more people than a number going up weekly.
 FG6 People share their symptoms … I’ve definitely benefited from those videos where people have actually stated what they feel ... they are the most real stories I’ve heard so far.
 FG6 Making sure that it’s clear at the beginning that this is going to be out in the media and if they want to be a spokesperson for it, record their time and update people then they have the option to but absolutely have no pressure to.
 FG5 The negative people would be the people that go against vaccines in general which seems to be something that I keep seeing all over everywhere at the moment. And that I suppose is one of the reasons I would not want my name out there just because there are people out there … some of them are quite cruel online.
 FG7 I’m sure we are all familiar with how badly the media reports anything to do with any scientific study … if you can potentially control the dissemination of that material and people have got such an interest, so in terms of keeping that message on track that could be quite useful.
 FG7 I live in *** and it’s a very small place and everyone knows everyone, and I think if they found out I was taking part they’d all start putting red crosses on my driveway and telling my house is infected, and I just do not think that would really go down very well … they would not be very impressed potentially bringing something back to the area.
 FG7 The last thing you want to do is turn it into some really sick version of Love Island.
 FG7 Conspiracy theorists are going to have a field day if they find out that a study is deliberately infecting people and they get the wrong end of the facts, but they are having a field day anyway it should not stop something important going ahead.