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. 2022 May 8;25(4):1789–1806. doi: 10.1111/hex.13522

Table 7.

Participants' concerns about the fairness of risk stratification.

Theme Quotation number Illustrative quotations
  • 1.
    Missing people from the risk assessment
Q1 P17: If people don't go to or don't volunteer that information then that whole process is going to become a lot harder anyway. (Jury 2, feedback session)
  • 2.
    Risk factors included in the model
Q2 P16: …because the last thing you want to do is to have somebody who was really at risk of catching cancer and only because they didn't know about their mother's history or their father's history they're not invited until they're 55. (Jury 2, facilitated discussion)
Q3 P17: I just thought that family history and genetics, you don't have a lot of choice and I don't want to bring in choice too much because some people say it's lifestyle choice and it isn't. (Jury 2, unfacilitated deliberation)
Q4

P3: …So it brings everything in the picture—

P6: Yeah, the risk score's covering everything, isn't it?—

P2: The lifestyle and everything.P8: But who decides on the weighting of those risks?

P3: The big professors that came up with the plan.

P2: GPs and doctors who have got our information. (Jury 1, unfacilitated deliberation)

  • 5.
    Management of people at low risk of cancer
Q5

P5: Except that they will lose out on a lot of people that don't have any of those characteristics but still get cancer.

P10: I'd say that is the thing that sits most uncomfortably with me, but I do recognise it is those added lifestyle factors that mean that that person is more likely to develop cancer, so we have to screen those people. (Jury 1, unfacilitated deliberation)

Q6 P10: I do struggle with that a little bit because it's almost like those that are unhealthy are going to get the screening and those that are healthy aren't. (Jury 1, facilitated discussion)
Q7 P29: I feel that people who've tried to lead healthy lives may be excluded unfairly. This is the ‘unfairly' bit where it's not based on, you know, actual… I don't know how to put it but that to me would be unjust. (Jury 3, unfacilitated deliberation)
  • 8.
    Adequate resources for screening
Q8 P8: …the more people are being picked up, the greater the risk of a bottleneck further on down the line, which then exacerbates both the emotional impact and potentially the physical consequences of the cancer. (Jury 1, feedback session)