Table 4 Participant opinions on research use of health information and biospecimens
From: A survey of patient perspectives on the research use of health information and biospecimens
Statement | Strongly Disagree % | Disagree % | Neutral % | Agree % | Strongly Agree % |
|---|---|---|---|---|---|
1. I would always give medical researchers consent to use my identifiable health information or biospecimens for any medical research purpose | |||||
health information | 4.7 | 18.0 | 15.2 | 43.1 | 18.0 |
biospecimen | 3.8 | 14.2 | 22.7 | 41.7 | 15.6 |
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 | 9.0 | 21.8 | 21.8 | 33.2 | 12.3 |
biospecimen | 10.4 | 34.1 | 23.2 | 23.7 | 6.2 |
3. It is enough for me to know my identifiable health information or biospecimen is being used for medical research in general | |||||
health information | 3.3 | 15.6 | 20.4 | 46.9 | 12.0 |
biospecimen | 3.8 | 14.2 | 17.1 | 47.4 | 14.7 |
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 | 1.9 | 12.8 | 14.2 | 50.2 | 18.0 |
biospecimen | 3.3 | 9.0 | 15.2 | 53.1 | 17.1 |
5. I would give consent to use my identifiable health information or biospecimen for research only on my specific health/illness issues | |||||
health information | 7.6 | 28.9 | 20.4 | 33.6 | 8.1 |
biospecimen | 6.6 | 29.4 | 23.7 | 30.8 | 7.1 |
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 | 11.8 | 41.2 | 23.2 | 18.0 | 4.3 |
biospecimen | 13.7 | 44.1 | 20.9 | 13.3 | 5.2 |
7. I am comfortable with medical researchers using my de-identified health information or biospecimens without my consent | |||||
health information | 6.6 | 16.6 | 10.9 | 40.8 | 22.7 |
biospecimen | 4.3 | 16.6 | 16.1 | 40.3 | 20.9 |
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 | 3.3 | 11.8 | 22.3 | 42.2 | 19.0 |
biospecimen | 3.8 | 9.5 | 22.7 | 43.1 | 18.0 |
9. I would like to know when my identifiable health information or biospecimens are used for medical research | |||||
health information | 5.7 | 16.6 | 26.5 | 36.5 | 13.3 |
biospecimen | 7.6 | 26.5 | 20.4 | 34.6 | 8.1 |
10. I would like to know when my de-identified health information or biospecimens are used for medical research | |||||
health information | 9.5 | 28.9 | 24.6 | 27.5 | 7.6 |
biospecimen | 13.3 | 32.2 | 19.0 | 28.0 | 4.3 |