Table 8 Scenario 4 justifications for consent choices

Consent provides protection against potential impact of research (10)^a

Acceptable practice because of the benefits (5)

Access to identifiable data by researchers requires consent (9)

The findings are presented in de-identified form (3)

Practical considerations of obtaining consent from thousands (3)

Consent required when researchers do the linkage (7)

Acceptable due to cost and time constraints involved when obtaining consent (2)

Consent is required when other spheres of life (apart from health) are involved (7)

Consent lowers research participation rates (2)

Opt-out consent would result in more participants being involved (6)

Low participation rates impact on quality of research (2)

Consent required because of lack of separation of tasks (4)

The information is already there so it should just be used without consent (2)

People have right to choose (4)

Researchers may disclose information to third party (2)

Researchers are not interested in specific cases (2)

Someone on the research team may know the research participants (2)

Strict measures/guidelines provide protection (2)

To ensure people are not upset/do not object (2)

Getting consent could have detrimental effect on participants (1)

No need for consent if data linkage organisation is trustworthy (1)

Opt-in consent captures the people who really want to participate (2)

Researchers will not use information obtained without consent to harm participants (1)

Having the option to consent is good (2)

Information belongs to people (1)

Provided that the linkage organisation was involved so that tasks are separated (1)

People want to control their information (1)

Researchers using identifiable information without consent is intrusive (1)

Researchers will be dealing with de-identified data eventually (1)

Acceptable depending on study (1)

Consent required when participants are experiencing mental health issues, as they may not welcome people delving into their affairs at that point in their lives (1)

Consent would have been given at data collection point (1)

Information given to WorkCover can be shared with researchers, as it was given confidentially (1)

Consent should be sought for all research (1)

Retrospective use of data does not require consent (1)

Consent should be sought at initial point of data collection (1)

People have inflated view of how interesting they are to others (1)

Collecting this kind of information without consent may not be legal (1)

It is very good to obtain consent if it is simple to do so (1)