The questionnaire reached 476 students, 435 of them consented to participate and 41 declined. Table 1 shows the sociodemographic characteristics of the sample. The majority of respondents were females (72.0%). Ages of the students ranged from 17 to 39 with a mean of 20.8. School categories were divided as medical versus non-medical, health versus non-health, and scientific (including health) versus non-scientific. The majority of responses came from scientific schools 83.4%, while the lowest included the non-scientific schools 16.6%. Medical students constituted 45.5% of the total study population. As for the academic year, students were divided into second, third, and fourth and above where the majority of responses (42.5%) belonged to students in the fourth year and above category and the lowest group constituted third-year students (22.1%). First-year students were not included since the study was conducted when they were in their first semester. Over 90% of students had a GPA of 2.5 and higher. Those with GPA of 2.0-2.5 constituted 9.0% and failing students with GPA below 2.0 were a minority (0.7%). Students with variable family income were well represented with the highest proportions was those with income of 500-999 JD (23.4%) followed by 2000 JD (20.9%) and above and the lowest proportion was students with income of less than 500 JD (8.7%) and 1500-1999 JD (9.2%).
Table 1. Sample characteristics
*Missing data (n) = 98 (22.5%)
Gender (N=435)
|
%
|
Male (122)
Female (313)
|
28.0
72.0
|
Age
|
|
17 (1)
|
0.2
|
18 (11)
|
2.5
|
19 (124)
|
28.5
|
20 (89)
|
20.5
|
21 (81)
|
18.6
|
22 (49)
|
11.3
|
23 (54)
|
12.4
|
24 and above (26)
|
2.1
|
Mean= 20.8 (± 2.01; Min= 17; Max= 39)
|
School Categories
|
|
Medical (198)
Non-medical (237)
|
45.5
54.5
|
|
|
Health School (318)
Non-health (117)
|
73.1
26.1
|
|
|
Scientific (363)
|
83.4
|
Non-scientific (72)
|
16.6
|
Academic Years
|
|
Second year (154)
|
35.4
|
Third year (96)
|
22.1
|
Fourth year and above (185)
|
42.5
|
GPA
|
|
<2.00 (3)
|
0.7
|
2.00-2.49 (40)
|
9.0
|
2.50-2.99 (106)
|
24.4
|
3.00-3.49 (144)
|
33.2
|
3.5-4.00 (142)
|
32.7
|
Income (JD)*
|
|
<500 (38)
|
8.7
|
500-999 (105)
|
23.4
|
1000-1499 (71)
|
15.2
|
1500-1999 (40)
|
9.2
|
2000 and higher (92)r
|
20.9
|
Knowledge, attitude, and practice towards biomedical research and biobanking
Students were asked if they had previously participated in biomedical research. Over a quarter of them (28.9%) indicated that they did (Table 2). A previous participation in research was found to be significantly high among students of the medical, health, and scientific schools (p <0.001). Students of higher academic years, and those with higher income also had a significant tendency (P<0.001 and 0.01, respectively) to previously participate in biomedical research. As for GPA, students with intermediate GPA, i.e. 2.50-2.99, were the largest group to had previously participate in research (P<0.01).
Students were then asked if they agreed on the use of biospecimens in biomedical research. The majority either agreed (57.5%) or strongly agreed (38.9%) (Table 2). Students in medical, health, and scientific school significantly tended to strongly agree compared to other schools (P<0.001). As for income, those with an income of <500 JD or 1500-1999 JD tended to be less acceptable of the use of biospecimens in research (P=0.023).
Students were then asked of their willingness to participate in biomedical research or genetic research (Table 2). There is an overwhelming willingness to participate in both of them where approximately 95% of students were willing to participate in biomedical research in general and almost 90% of them were willing to participate in genetic research regardless of gender, academic year, or GPA. Students from medical, health, and scientific school were significantly more willing to participate in both compared to their counterparts. There is also a trend that students with a family income of <500 JD or 1500-1999 JD were found to be less enthusiastic towards participation, not only regarding research discipline being very significant (<0.001), but also participation in genetic research.
Table 2. Knowledge of biobanking, attitudes towards the use of biospecimen in research, and engagement in research. (1 * P <0.05; ** P <0.01; *** P <0.001)
Questions
|
Responses
|
Significant factors associated with favorable response1
|
|
Yes (%)
|
No (%)
|
Have you previously participated in medical research
|
112 (28.9)
|
276 (71.1)
|
Being in medical***, health***, or scientific** schools, 3rd and 4th year, GPA of 2.50-2.99***, income >2000 JD**
|
Have you previously heard of biobanks?
|
230 (52.9)
|
250 (47.1)
|
Being in medical***, health***, or scientific** schools, GPA of ³2.50*, income of 500-1500 and >2000 JD**, prior participation in biomedical research*
|
|
Strongly Agree
(%)
|
Agree
(%)
|
Disagree
(%)
|
Strongly disagree
(%)
|
|
Do you generally agree with using biospecimen in medical research?
|
169 (38.9)
|
250 (57.5)
|
16 (3.7)
|
0 (0)
|
Being in medical***, health***, or scientific*** schools, GPA of ³3.50*, income 500-1500 and >2000 JD**, prior participation in biomedical research**
|
How likely is it that you participate in biomedical research by providing biospecimen and personal/family information?
|
145 (35)
|
246 (59.4)
|
20 (4.8)
|
3 (0.7)
|
Being in medical*, health**, or scientific* schools, prior participation in biomedical research*
|
How likely is it that you participate in genetic research?
|
153 (36.9)
|
213 (51.3)
|
39 (9.4)
|
10 (2.4)
|
Being in medical*, health**, or scientific* schools, income 500-1500 and >2000 JD**
|
Possibility of participating in future biobanking research
|
99 (24.6)
|
271 (67.4)
|
25 (6.2)
|
7 (1.7)
|
Being in medical***, health*, or scientific* schools, income 500-1500 and >2000 JD*, prior participation in biomedical research**
|
Students were then asked if they had heard of biobanks before (Table 2). The concept of a biobank was defined to students when they were asked of their willingness to participate in a biobank. The majority of students (~90%) whether from health schools or non-health schools either strongly agreed or agreed to participate (Table 2). As expected, students of health schools were significantly more enthusiastic about participation in a biobank.
Preferred biospecimen donation for biomedical research
Students were asked of the biospecimens they would prefer to contribute for research purposes. Options included blood, cheek swab, urine, saliva, stool, and tissue leftover (Figure 1). The most preferable sample was blood with 85.7% of students preferring to contribute for research purposes, followed by cheek swab with 66.7% and comparably saliva. On the other hand, stool was the least preferred biospecimen to be donated for research.
Factors influencing participation in biomedical research and preferred sample types
Students were then asked about factors that might affect participation in biomedical research by ranking them according to the level of importance ranging from least level of importance to very important. There was also an option of “unsure”. The factors analyzed were: time spent to participate, fear of blood and needles, consenting prior to participation, gaining direct personal benefit, religious views in regards to participation, protection of privacy, availability of data, withdrawal, nature of provided information whether personal or family-based, approval of an authorized ethics committee, type of research conducted, positive impact on public health, personal gain of any profit, availability of general or personal results, trust toward researchers, and identity of researcher.
As detailed in Table 3, the most influential factors that were ranked as “very important” were protection of privacy (55.9%), followed closely by consenting prior to participation (54.3%), approval of an authorized ethics committee (51.5%), and trust towards researchers (45.5%). On the other hand, the least important factors were personal gain of any profit (66.7%), fear of blood and needles and (65.3%), and identity of researchers (43.4%). Interestingly, religious views and time spent to participate were considered to be “important” by a considerable proportion of students (44.6%).
Table 3. Factors influencing participation in biomedical research.
|
Least level of importance
(%)
|
Slightly important
(%)
|
Important
(%)
|
Very important
(%)
|
Unsure
(%)
|
Time spent to participate
|
23 (5.3)
|
127 (29.2)
|
194 (44.6)
|
69 (15.9)
|
22 (5.1)
|
Fear of blood and needles
|
284 (65.3)
|
63 (14.5)
|
50 (11.5)
|
19 (4.4)
|
19 (4.4)
|
Consenting prior to
participation
|
12 (2.8)
|
33 (7.6)
|
148 (34.0)
|
236 (54.3)
|
6 (1.4)
|
Gaining direct personal benefit
|
137 (31.5)
|
95 (21.8)
|
107 (24.6)
|
59 (13.6)
|
37 (8.5)
|
Religious view on participation
|
23 (5.3)
|
127 (29.2)
|
194 (44.6)
|
69 (15.9)
|
22 (5.1)
|
Protection of privacy
|
16 (3.7)
|
38 (8.7)
|
131 (30.1)
|
243 (55.9)
|
7 (1.60
|
Ability of data withdrawal
|
67 (15.4)
|
107 (24.6)
|
121 (27.8)
|
108 (24.8)
|
32 (7.4)
|
Nature of provided information
|
35 (8.0)
|
86 (19.8)
|
153 (35.2)
|
145 (33.3)
|
16 (3.7)
|
Nature of family information provided
|
33 (7.6)
|
90 (20.7)
|
148 (34.0)
|
150 (34.5)
|
14 (3.2)
|
Approval of an authorized ethics committee
|
19 (4.4)
|
56 (12.9)
|
132 (30.3)
|
224 (51.5)
|
4 (0.9)
|
Type of research conducted
|
64 (14.7)
|
98 (22.5)
|
138 (31.7)
|
120 (27.6)
|
15 (3.4)
|
Positive impact on public health
|
9 (2.1)
|
75 (17.2)
|
170 (39.1)
|
169 (38.9)
|
12 (2.8)
|
Personal gain of any profit
|
290 (66.7)
|
70 (16.1)
|
21 (4.8)
|
7 (1.6)
|
47 (10.8)
|
Availability of general results
|
26 (6.0)
|
101 (23.2)
|
171 (39.3)
|
130 (29.9)
|
7 (1.6)
|
Availability of personal results
|
27 (6.2)
|
84 (19.3)
|
170 (39.1)
|
142 (32.6)
|
12 (2.8)
|
Trust towards researchers
|
11 (2.5)
|
61 (14.0)
|
153 (35.2)
|
198 (45.5)
|
12 (2.8)
|
Identity of researchers
|
189 (43.4)
|
85 (19.5)
|
74 (17.0)
|
39 (9.0)
|
48 (11.0)
|
Influence of biobanking aspects on willingness to donate
To investigate how the impact of certain aspects related to biobanks would affect willingness to participate in a biobank, students were asked if they were willing to donate for a biobank under certain conditions including lack of benefits, not knowing the type of research, the managing body of the biobank (academic institution, governmental entity, private sector, an Arab entity, or a non-Arab entity) as shown in Table 4. There was a strong shift of willingness towards not participating when students were told that they would not know the type of research conducted where likeliness to participate dropped down to approximately 30% or they would not receive general results of the research where likeliness dropped down to less than half. Knowing that the biobank would be managed by an academic institution was a favorable indication especially when compared to a governmental entity, a private sector, an Arab institution, or a non-Arab institution (89.2% vs. 75.9% vs. 63.4% vs. 76.3 vs. 66.9, respectively.)
Table 4. Impact of certain aspects of biobanks on willingness to participate.
Possibility of participating in a biobank under different circumstances:
|
Strongly disagree
(%)
|
disagree
(%)
|
Agree
(%)
|
Strongly agree
(%)
|
Unsure
(%)
|
Overall likelihood to participate:
|
7 (1.7)
|
25 (6.2)
|
271 (67.4)
|
99 (24.6)
|
33 (7.5)
|
a. without gaining benefits directly
|
13 (3.0)
|
36 (8.3)
|
242 (55.6)
|
111 (25.5)
|
33 (7.6)
|
b. without knowing the type of research
|
85 (19.5)
|
161 (37.0)
|
105 (24.1)
|
20 (4.6)
|
46 (10.6)
|
c. without being provided with general results
|
42 (9.7)
|
138 (31.7)
|
175 (40.2)
|
34 (7.8)
|
46 (10.6)
|
d. if managed by governmental entity
|
19 (4.4)
|
39 (9.0)
|
250 (57.5)
|
80 (18.4)
|
47 (10.8)
|
e. if managed by an academic institute
|
8 (1.8)
|
22 (5.1)
|
237 (54.5)
|
151 (34.7)
|
17 (3.9)
|
f. if managed by private health sector.
|
32 (7.4)
|
66 (15.2)
|
208 (47.8)
|
68 (15.6)
|
61 (14)
|
g. if managed by an Arab institute
|
16 (3.7)
|
46 (10.6)
|
249 (57.2)
|
83 (19.1)
|
41 (9.4)
|
h. if managed by a non-Arab institute
|
26 (6.0)
|
63 (14.5)
|
217 (49.9)
|
74 (17.0)
|
55 (12.6)
|
Personal choices regarding biobanking aspects
Biobanks are associated with certain aspects in regards to type of consent, donor coding, re-contact, and means of sample handling at withdrawal. We, therefore, asked students about their preferences in specific biobank operation. Students were given three options of consent: either an open consent allowing researchers to conduct any type of research on the biospecimens, a limited consent whereby specific type of research that is disease-specific, for example, can be conducted, or a consent that necessitates contacting donors every time a biospecimen would be used for research. As shown in Table 5, there was no clear preference over which type of consent is preferred where approximately one-third of students chose any one of the three types. In addition, half of the students preferred samples to be traceable back to donors, one quarter of them either preferred de-identifying samples either at time of collection or upon request at a later stage. As for re-contacting donors, two-thirds of students opted to be contacted whenever results specific to samples would be generated, whereas a quarter of them preferred to be re-contacted whenever results indicate the possibility of disease diagnosis ,8.5% wanted to be contacted if the disease could be treated, and only 1.1% never wanted to be re-contacted. Upon withdrawal, slightly more than half of students preferred to have their samples and data disposed and one-third of them would choose elimination of donor identity, but preserving samples and related information.
Table 5. Specific preferences in regards to biobanking-related aspects.
Preferred level of consent when participating in a biobank and donating a biospecimen
|
Wide consent
|
138 (31.7)
|
Limited consent
|
166 (38.2)
|
A one-time consent with possible renewal
|
131 (30.1)
|
Preferred procedure to protect donor identity when collecting samples
|
Just code samples and enable retrieval of donor identity
|
216 (49.7)
|
Ability to delete sample coding at a later stage upon request
|
120 (27.6)
|
Anonymize samples at time of collection
|
98 (22.5)
|
Doesn’t really matter to me
|
1 (0.2)
|
When to contact participants if specific results to their samples are generated
|
Re-contact under all circumstances
|
293 (67.4)
|
Re-contact me only in definite cases of having or increasing the possibility of having a disease
|
100 (23.0)
|
Re-contact me only in definite cases of having or increasing the possibility of having a treatable disease
|
37 (8.5)
|
Never contact me
|
5 (1.1)
|
In case of deciding to withdraw from a biobank
|
Disposal of samples only
|
31 (7.1)
|
Deleting all data only
|
41 (9.4)
|
Disposal of both sample and data
|
225 (51.7)
|
Removing donor identity, but keep samples and data
|
138 (31.7)
|