Table 3.
Participant preferences when seeking permission for sharing genomics data when patient is no longer able
Total N (%) | |
---|---|
Do you think someone else should be able to give permission for researchers to access your anonymous genomic data from medical records if you are no longer able? (N = 1491, 99.80%) | |
No, only I can give permission | 353 (23.7) |
No, data freely available | 496 (33.3) |
Yes | 642 (43.1) |
If Yes, who would you prefer to give permission for your anonymous genomic data to be used in research on your behalf? (you can select multiple answers) (N = 642) | |
Family member | 392 (61.1) |
Nominated legal respresentative | 294 (45.8) |
Doctor | 125 (19.5) |
Human Research Ethics Committee (HREC) | 121 (18.9) |
Data governance | 61 (9.5) |