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Table 5 Scenario 1 justifications for consent choices

From: The acceptability of conducting data linkage research without obtaining consent: lay people’s views and justifications

Scenario 1 - health data linked by experts

Consent justifications

No consent justifications

People have right to choose (6)a

Use of de-identified data does not require consent (12)

People need to be aware of what is happening (6)

Acceptable practice because of the benefits (9)

To ensure people are not upset/do not object (6)

Large data sets serve as protection against identification (3)

Consent should be sought at initial point of data collection (5)

Strict measures/guidelines provide protection (3)

Information belongs to people (4)

Participants are not directly involved (3)

People prefer to be given the choice (3)

Practical considerations of obtaining consent from thousands (3)

Consent ensures that privacy is protected (3)

Seeking consent is a sign of respect (2)

Consent lowers research participation rates (3)

Consent provides protection (2)

Knowledge of data linkage process allays concerns so no consent is acceptable (2)

Use of information without consent leads to trouble for researchers (2)

Consent is required for everything (2)

Acceptable if security and safety measures in place (2)

Consent should be sought for all research (2)

Privacy legislation binds researchers and protects participants (2) The more participants involved, the better the quality of the study (1)

Disclosure of information to a third party requires consent (2)

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

Unfair to force participation (1)

Medical information will not be provided to other parties (1)

People want to control their information (1)

Some don’t trust that information stays anonymous (1)

Use of de-identified information does not breach privacy (1)

Seeking consent is courteous (1)

Retrospective use of data does not require consent (1)

Consent required because of cultural differences; some people don’t like their information used if they derive no benefits, or if there are perceived risks (1)

Acceptable depending on study (1)

Consent is required when researchers access identifiable information (1)

Acceptable due to cost and time constraints involved when obtaining consent (1)

Consent is required when other spheres of life (apart from health) are involved (1)

Seeking consent for use of private information is an ethical requirement (1)

Consent is a legal requirement (1)

To cater for future uses of the same data (1)

  1. aBracketed numbers reveal the number of participants offering each justification