Table 6.
Scenario 2 justifications for consent choices
| Scenario 2 - health data linked by experts | |
|---|---|
| Consent justifications | No consent justifications |
| Consent should be sought at initial point of data collection (4)a | Use of de-identified data does not require consent (13/D9b) |
| To ensure people are not upset/do not object (2) | Acceptable practice because of the benefits (8/D1) |
| People have right to choose (1) | Practical considerations of obtaining consent from thousands (4/D2) |
| Information belongs to people (1) | Audit type activities do not require consent (3/D1) |
| People want to control their information (1) | Acceptable due to cost and time constraints involved when obtaining consent (3/D2) |
| Consent for deceased person’s information should be sought because they still have rights (D1) | |
| Seeking consent is a sign of respect (1/D1)b | Requesting consent for use of de-identified data is burdensome, as people are time-poor (1/D1) |
| Seeking consent for deceased people’s information is appropriate because knowledge that they are contributing to society would bring comfort to families (D1) | Requesting consent could create difficulties, as people’s confidence in the fact that research uses de-identified data might be reduced (1) |
| Acceptable if security and safety measures in place (1) | |
| Use of information without consent leads to trouble for researchers (1) | Use of information will not prejudice participants (1) |
| Not seeking consent infringes privacy (1) | Acceptable not to seek consent from those who cannot be contacted if strict guidelines adhered to (1) |
| Consent should be sought for all research (1) | Not dealing with people directly (1) |
| Consent for use of data should be sought whenever health services are accessed. Therefore, a deceased person’s consent would have already been obtained (D1) | Retrospective use of medical data acceptable (1) |
| Requesting consent for deceased people’s information could traumatise family (D5) | |
| There are ways to achieve contact to request consent despite difficulties (1) | Data regarding deceased people is invaluable and should be included (D2) |
| Relatives will be unaware of use of data relating to deceased relative (D2) | |
| Use of deceased people’s information does not impact on deceased person or their family (D2) | |
aBracketed numbers reveal the number of participants offering each justification
b D denotes justifications provided in relation to deceased individuals’ information