Table 4.
Adult respondents’ (adults of child-rearing age or parents of index child patients) thoughts regarding their participation in research (N=3139).
| Survey question | n (%) | |
| 1. Have you or anyone in your family ever been a participant in any type of medical research? | ||
|
|
Prefer not to answer | 3 (0.01) |
|
|
No | 1838 (58.55) |
|
|
Unsure | 374 (11.91) |
|
|
Yes | 924 (29.44) |
| 2. Can medical researchers contact you to tell you about opportunities for you or someone in your family to participate in a medical research project? | ||
|
|
Prefer not to answer | 69 (2.19) |
|
|
No | 504 (16.06) |
|
|
Maybe | 1215 (38.71) |
|
|
Yes | 1333 (42.47) |
| 2B. Please select any of the answers that describe what might help you decide to be contacted. | ||
|
|
What research is about | 1977 (62.98) |
|
|
Specific topics | 240 (7.65) |
|
|
How much time it would take | 1513 (48.20) |
|
|
My doctor’s opinion | 692 (22.05) |
|
|
Being paid | 541 (17.23) |
|
|
Whether involves children | 750 (23.89) |
|
|
Other | 70 (2.23) |
| 3. Do you have a child or children under the age of 21? | ||
|
|
Prefer not to answer | 13 (0.41) |
|
|
No | 1106 (35.23) |
|
|
Yes | 2001 (63.74) |
| 5. Would you be willing to talk to family members or friends about taking part in a medical research study? | ||
|
|
Prefer not to answer | 35 (1.12) |
|
|
No | 1102 (35.12) |
|
|
Unsure | 967 (30.81) |
|
|
Yes | 1000 (31.86) |
| 6. How do you feel about your medical information being used for research? | ||
|
|
Unsure | 331 (10.55) |
|
|
Prefer no answer | 23 (0.73) |
|
|
Not good idea | 30 (0.95) |
|
|
Fantastic | 1095 (34.88) |
|
|
Good idea | 1507 (48.01) |
| 7. If your health care provider deidentified your health information, how would you feel about your information being shared? | ||
|
|
Unsure | 379 (12.07) |
|
|
Prefer not to answer | 21 (0.67) |
|
|
Fantastic | 1004 (31.98) |
|
|
Good idea | 1533 (48.84) |
|
|
Terrible | 28 (0.89) |
|
|
Not good Idea | 72 (2.29) |
|
|
Other | 57 (1.82) |
| 10. Do you have hypertension? | ||
|
|
Prefer not to answer | 9 (0.29) |
|
|
No | 2479 (78.97) |
|
|
Unsure | 64 (2.04) |
|
|
Yes | 516 (16.44) |
| 10. Do you have high cholesterol? | ||
|
|
Prefer not to answer | 11 (0.35) |
|
|
No | 2281 (72.66) |
|
|
Unsure | 159 (5.07) |
|
|
Yes | 605 (19.27) |
| 10. Do you have diabetes? | ||
|
|
Prefer no answer | 9 (0.29) |
|
|
No | 2670 (87.93) |
|
|
Unsure | 95 (3.03) |
|
|
Yes | 276 (8.79) |
| 10. Do you have cancer? | ||
|
|
Unsure | 80 (2.55) |
|
|
Prefer not to answer | 13 (0.41) |
|
|
No | 2691 (85.76) |
|
|
None | 95 (2.89) |
|
|
Yes | 150 (4.78) |
| 11. Do you have relatives with hypertension? | ||
|
|
Prefer not to answer | 10 (0.32) |
|
|
No | 888 (28.29) |
|
|
Unsure | 200 (6.37) |
|
|
Yes | 1967 (62.66) |
| 11. Do you have relatives with high cholesterol? | ||
|
|
Prefer no answer | 11 (0.35) |
|
|
No | 973 (30.99) |
|
|
Unsure | 341 (10.86) |
|
|
Yes | 1718 (54.73) |
| 11. Do you have relatives with diabetes? | ||
|
|
Prefer not to answer | 10 (0.32) |
|
|
No | 1488 (47.40) |
|
|
Unsure | 188 (5.99) |
|
|
Yes | 1344 (42.82) |
| 11. Do you have relatives with cancer? | ||
|
|
Unsure | 140 (4.46) |
|
|
Prefer not to answer | 12 (0.38) |
|
|
No | 1388 (44.22) |
|
|
None | 95 (3.03) |
|
|
Yes | 1402 (44.66) |