Table 5 Cancer patients’ reasons for non-participation in biobank research
From: Attitudes of oncology patients’ towards biospecimen donation for biobank research
Definitely not n (%) | Rather not n (%) | I do not know n (%) | Rather yes n (%) | Definitely yes n (%) | Missing | |
|---|---|---|---|---|---|---|
What are the possible reasons for your refusal to donate cancer tissue to a biobank? | ||||||
geographical distance and the necessity to travel | 32 (5.8) | 105 (19.2) | 37 (6.7) | 202 (36.9) | 172 (31.4) | 0 (0) |
the necessity of repeat examinations | 30 (5.5) | 137 (25) | 36 (6.5) | 219 (40) | 126 (23) | 0 (0) |
lack of personal benefits from the donation | 255 (46.5) | 209 (38.1) | 48 (8.8) | 23 (4.2) | 13 (2.4) | 0 (0) |
lack of financial remuneration | 327 (59.7) | 156 (28.5) | 44 (8) | 8 (1.4) | 12 (2.2) | 1 (0.2) |
I think it is a waste of time | 347 (63.3) | 138 (25.2) | 40 (7.3) | 13 (2.4) | 10 (1.8) | 0 (0) |
fear over the safety of the data | 99 (18.1) | 174 (31.7) | 45 (8.2) | 136 (24.8) | 93 (17) | 1 (0.2) |
it would be against my religious beliefs | 317 (57.8) | 154 (28.1) | 43 (7.9) | 15 (2.7) | 19 (3.5) | 0 (0) |
fear over unethical use of the sample | 81 (14.8) | 174 (31.7) | 35 (6.4) | 128 (23.4) | 130 (23.7) | 0 (0) |
fear that they will take more samples than necessary | 119 (21.7) | 239 (43.6) | 39 (7.1) | 88 (16.1) | 63 (11.5) | 0 (0) |
fear over the invasive nature of the sampling procedure (pain, sight of blood, needles or injections) | 89 (16.2) | 173 (31.6) | 26 (4.7) | 125 (22.8) | 135 (24.6) | 0 (0) |
fear of being infected with infectious disease (HIV, sepsis, jaundice) | 105 (19.2) | 178 (32.5) | 31 (5.6) | 101 (18.4) | 133 (24.3) | 0 (0) |
fear of detection of disease or genetic predispositions | 215 (39.2) | 187 (34.1) | 51 (9.3) | 55 (10) | 40 (7.3) | 0 (0) |
fear that the data generated from the research might result in stigmatisation and discrimination | 170 (31) | 203 (37) | 64 (11.7) | 51 (9.3) | 60 (11) | 0 (0) |
fear that my family might know about my health status | 307 (56) | 171 (31.2) | 33 (6) | 15 (2.8) | 22 (4) | 0 (0) |
fear over the commercial use of the samples | 69 (12.6) | 159 (29) | 39 (7.1) | 106 (19.3) | 174 (31.8) | 1 (0.2) |
fear that the government might have access to the samples | 74 (13.5) | 153 (27.9) | 52 (9.5) | 96 (17.5) | 173 (31.6) | 0 (0) |
fear that insurance companies might have the access to the samples | 71 (13) | 147 (26.8) | 51 (9.3) | 107 (19.5) | 172 (31.4) | 0 (0) |
fear that employers might have the access to the samples | 87 (15.9) | 162 (29.5) | 45 (8.2) | 87 (15.9) | 167 (30.5) | 0 (0) |
I do not trust scientists and such institutions | 232 (42.3) | 208 (38) | 68 (12.4) | 11 (2) | 29 (5.3) | 0 (0) |