Scenario 1 - health data linked by experts | |
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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) |