The anonymous electronic questionnaires were spread through QQ, Wechat, E-mail and issue paper anonymous questionnaires face to face. A total number of 2200 people were invited to this research. After excluding those did not accord with the inclusive criteria, 67.1%(1477) of respondents mainly aging from 16 to 35 years, were included in this survey. The electronic questionnaires sent by QQ and WeChat had the highest response rate of 49.9% (1097), the other two methods: E-mail 10.9% (239) and paper questionnaire 6.4% (141). (Supplement Table 1)
In all the gathered questioners, slightly above half were female (824, 55.8%). A majority (1422, 96.3%) of the respondents were in good health, whereas very few with fair/poor health (55, 3.7%). More than half (783, 53.0%) of respondents were unmarried, and 1321 (89.4%) respondents were Han nationality, and 156 (10.6%) were minorities. 1250 (84.6%) had undergraduates or higher education background and 1274 (86.3%) live in the urban area. About one in five respondents (306, 20.7%) had a family disease history, 8.4% (124) had a chronic disease history, and about one in ten (187, 12.7%) had a previous donation history. All respondents’ characteristics were listed in Supplement Table 2.
2.Respondents’ knowledge of donation and biobank construction
Among the respondents, about one in five of them (305,20.6%) said they have a brief knowledge of biospecimen donation, while 1172(79.4%) indicated that they do not know about that. Among them, 194(63.6%) respondents knew the type of biospecimen, 162(53.1%) knew the usage of biospecimen and 89(29.2%) of them knew the process of biospecimen donation. 106(34.8%) have an overview but knew no details of biospecimen donation, most of the respondents who had contacted the biospecimen donation have some knowledge of biospecimen type and usage. Results listed in Supplement Table 3.
3. Donation willingness in different situations
In 1477 responders, 936 were willing to participating, providing a percentage of 63.4%. Among them, 638 (68.2%) respondents indicated that they are willing to donate biospecimens and participate in biospecimen collection of discarded biospecimens after examinations. There were 421(45.0%) respondents willing to donate biospecimens without any test, training or treatment, and there were 256(27.4%) respondents willing to donate biospecimens after hospital discharge. In other conditions, such as before admission(252, 26.9%), after the treatment(245, 26.2%) and before treatment(219, 23.4%), the willingness of biospecimen donations was almost identical percentage. (Table 1)
4.Characteristics affecting the donation willingness
Several characteristics, including genders, age, place of residence, educational background, nationality and health condition, were being analyzed in order to find the aspects influencing donation willingness. Chi-square test of all respondents characteristics and biospecimen donation willingness demonstrated statistically significant between donation willingness and family disease history(p<0.05), previous donation history (p<0.01), the brief knowledge of biospecimen donation (p<0.01) and the knowledge of biospecimen donation details(p<0.01). (Table 2)
Univariate analysis and multivariate analysis were used to investigate factors relation with donation willingness. In the univariate analysis model, we observe that people with family disease history(p = 0.016), a previous donation(p<0.01), brief knowledge of biospecimen donation(p<0.01) and knowledge of biospecimen donation details(p<0.01) were more likely to participate in the biospecimen donation. (Table 3). In the multiple logistic regression model, donation willingness and related factors were included in the following assay. Respondents with family disease history(p = 0.014) and respondents have a brief knowledge of biospecimen donation(p<0.01) were more willing to participate in biospecimen donation. (Table 3)
In summary, the respondents more likely to donate biospecimen were had the family disease and had a brief knowledge of biospecimen donation, held a positive attitude to biospecimen donation.
5.Major concerns and motivation in donation willingness
Respondents who participate in the questionnaire and willing to donate biospecimen were invited to answer additional questions about their major motivations and major concerns (Table 1). Most of them driven by altruistic motives choosing the social benefits. There were 598(63.9%) respondents motivation is to benefit the public, 526(56.2%) respondents choose to help other patients, while there were 479(51.2%) choose to help family members, relatives or future generations, 424(45.3%) choose to benefit to their health. Moreover, there were 486(51.9%) refer to benefit advance researches. However, when talking to the concerns, among the adverse effects of the questionnaire, half of the respondents(518, 55.3%) who were willing to donation chose to focus on the adverse effects on their health, and 513(54.8%) respondents concerns on the leakage of personal information or biospecimens. Another 370(39.5%) respondents concerned about the impairment of medical rights. (Table 1)
When respondents were asked what problems they were most worried about in the process of biospecimen donation and the factors prevented them from participating in the biospecimen donation, more than half(322, 59.5%) of the respondents who were unwilling to donation expressed concern that individual’s private information could not be entirely protected. In contrast, only 137 of the respondents were concerned that their health would be affected. Another 54 respondents said they were not interested. 43 respondents concerned that biospecimen and information may be used for unclear purposes. There were 9 of the respondents said they have other reasons for their unwillingness to participate in biospecimen donation, such as fear of being cheated without knowing the corresponding knowledge, time-consuming to donation specimens, and they fear to be taken by others to get their personal data. When it comes to the concerns, 257(47.5%) respondents concerned about the negative impact on their health, and 236(43.6%) respondents concerned about the leakage of personal information or biospecimens. 158 (29.2%) respondents concerned about the impairment of medical rights. Besides, 131(24.2%) concerned about the influence of examination results. Equally, 125 (23.1%) respondents express the distrust toward biobank staff. Furthermore, 81(15.0%) respondents concerned about the unknown impact in the future. (Table 1)