Table 4:

Illustrative participant quotes regarding ethical issues

IssueRepresentative quote
Protection of health dataThe world that we live in, there’s all kinds of access to information even though it’s protected, but you hear all kinds of scenarios where sensitive information gets leaked. So yeah, I would have some concerns. (Participant 18–042, patient)
Skepticism regarding accountability mechanismsAs a member of the public, my opinion doesn’t count. (Participant 18–004, patient)
Allocation of treatment by computersIt’s ethically incorrect, as you are picking and choosing who gets treatment. You need to give them options and have conversations with the patients. (Participant 18–008, provider)
Allowing sale of data to private industryYou should have to give up some [privacy]. … You want to be cured and [the company is] providing you with this cure, so you balance it out. (Participant 18–012, caregiver)
Computer-based predictionsBefore [the brain tumour], I might [have said] yes, because I would say … it’s the survival of the fittest. … But you can never underestimate the fight … in a person, even with a disease. And [a patient] can far surpass the expectations that are set out in these kinds of statistics. (Participant 18–001, patient)
Trust and confidentialityI think … in a democratic society, for members of the public to have faith in the health care system … individuals need to believe that what they believe to be confidential is held confidential, and not shared. But also for me to have confidence in health care systems, I have to believe that leaders in health care systems will make decisions for the greater good of people, right? (Participant 18–032, patient)
Health data v. other dataIt’s a privilege to be told this information — patients don’t even tell their family what they tell us (Participant 18–054, provider)