Table 5.
Comparison of participant opinions on research use of health information, biospecimens and consideration of identifiability
| Statement | Disagree/Strongly disagree % (N) | Agree/Strongly agree % (N) |
|---|---|---|
| 1. I would always give medical researchers consent to use my identifiable health information or biospecimens for any medical research purpose * | ||
| health information | 23.1 (48) | 62.0 (129) |
| biospecimen | 18.4 (38) | 58.7 (121) |
| 2. I need to know the exact medical research purpose for which my identifiable health information or biospecimen is being used before I would give consent * | ||
| health information | 31.6 (65) | 46.6 (96) |
| biospecimen | 45.9 (94) | 30.7 (63) |
| 3. It is enough for me to know my identifiable health information or biospecimen is being used for medical research in general * | ||
| health information | 19.4 (40) | 60.2 (124) |
| biospecimen | 18.6 (38) | 64.2 (131) |
| 4. I would consent to have my identifiable health information or biospecimens held in a research repository, data library or biobank and used as needed by researchers * | ||
| health information | 15.1 (31) | 70.5 (144) |
| biospecimen | 12.7 (26) | 72.2 (148) |
| 5. I would give consent to use my identifiable health information or biospecimen for research only on my specific health/illness issues * | ||
| health information | 37.2 (77) | 42.5 (88) |
| biospecimen | 37.1 (76) | 39.0 (80) |
| 6. I need to know the identity of the person to whom my identifiable health information/biospecimen is being given before I would give consent * | ||
| health information | 54.1 (112) | 22.7 (47) |
| biospecimen | 59.8 (122) | 19.1 (39) |
| 7. I am comfortable with medical researchers using my de-identified health information or biospecimens without my consent | ||
| health information | 23.9 (49) | 65.4 (134) |
| biospecimen | 21.4 (44) | 62.6 (129) |
| 8. I believe I should be given the opportunity to change my mind and take back my consent once I have given it * | ||
| health information | 15.5 (32) | 62.3 (129) |
| biospecimen | 13.7 (28) | 63.2 (129) |
| 9. I would like to know when my identifiable health information or biospecimens are used for medical research | ||
| health information | 22.7 (47) | 50.7 (105) |
| biospecimen | 35.3 (72) | 44.1 (90) |
| 10. I would like to know when my de-identified health information or biospecimens are used for medical research | ||
| health information | 39.3 (81) | 35.9 (74) |
| biospecimen | 46.6 (96) | 33.0 (68) |
P < 0.005
*significant at p <0.005 (Chi Square)