Table (1): Description of study participants’ characteristics (n=83):

Characteristics Frequency (%)

Country
Egypt 54(65.0)
Jordan 4(4.8)
Morocco 11(13.3)
Sudan 11(13.3)
No answer 3(3.6)
Gender
Male 37(44.6)
Female 46(55.4)
Age (mean ± SD) 50.5 (±9.9)
Highest degree
Graduation 43 (51.8)
PhD 35(42.2)
Others 5 (6)
University rank
Lecturer 30 (36.1)
Professor 44 (53)
Not affiliated to a university 9 (10.8)
Ever heard the term biobank
Yes 70 (85.4)
No 12 (14.6)
If there is a biobank in the institution
Yes 14 (17.1)
No 68 (82.9)
REC reviewed protocols involving biospecimens
Yes 41 (50)
No 41 (50)
REC reviewed protocols involving genetics research
Yes 51 (62.2)
No 31 (37.8)
Duration of existence of REC in their facility 9.9 (±8.8)
Duration of participant’s membership in REC 5.9 (±5.7)
REC member < 2 years 28 (35.9)
REC member > 2 years. 50 (64.1)
BAR CHART 1

your REC has reviewed research that involved the collection of

biospeciments for future unspecified
research, which of the following type of Informed Consent has
been approved?
41 answered 73 skipped
14

12

10

0
Broad consent Tiered Consent Specified Consent

Series1 Series2 Series3

WHAT HAPPENED WITH THE “NO” RESPONSES IN THE GRAPH, WHICH IS SERIES 2?
Please provide absolute numbers of each bar and the total sample size
Series 3 was mistakenly added. Sorry for that.
Green color represents yes and orange represents no.
Table below mentions number of respondents for each category.
BROAD CONSENT TIERED CONSENT SPECIFIED CONSENT

Yes No Yes No Yes No

12 4 5 9 10 9
 your REC has reviewed research that involved the collection of biospec-
iments for future unspecified
research, which of the following type of Informed Consent has been
approved?
41 answered 73 skipped
14
12
10
8
6
4
2
0
Broad consent Tiered Consent Specified Consent

Series1 Series2

BARCHART 2
 We would like to obtain your opinion regarding
the type of consent that should be used when col-
lecting
biospecimens for future unspecified research.
100

90

80

70

60

50

40

30

20

10

0
1

broad TIERED specific dynamic

Please provide absolute numbers of each bar and the total sample size

dynami
broad TIERED specific c
19 12 18 17
BARCHART 3

If you chose broad consent in the previous

question, please choose which of the following
condition on the
use of broad consent is acceptable
21 opted Broad Consent
100
90
80
70
60
50
40
30
20
10
0
code available code not available

Please provide absolute numbers of each bar and the total sample size

A broad consent is acceptable only when samples will be de-identified and there is A Code that links the
samples to the participants' identities but that code will not be shared with future investigators. 16 respondents
answered who have opted for broad consent in Section E.

A broad consent is acceptable only when samples will be de-identified and there is No Code that could ever link
the samples to the participants. 5 respondents answered who have opted for broad consent in Section E.
Table (5): Participants' opinion regarding the information that should be in the Material Transfer Agreement
or the Data Sharing Agreement: section 7
No I don't know Yes
Question
N % N % N %
1. Whether any identifying information will be provided 62 76.2 5 6.2 14 17.3
with the biospecimens or data. N=81
2. The nature of the plans for ensuring the confidentiality 71 88.8 5 6.2 4 5
of any identifying information N=80
3. Whether the Recipient Scientist or Recipient
Organization intends to re-export the bio specimens or 56 69.1 12 14.8 13 16.0
transfer the data to other countries. N=81
4. Plans for the sharing of any commercial profit that 56 70.9 10 12.7 13 16.5
result from the research .N=79
5. Plans to ensure that any benefit that results from
research (e.g., drugs) be shared in a fair manner among all 68 84 9 11.1 4 4.9
countries N= 81
6. Plans to ensure that the original investigators who
collected the bio specimens or data receive proper 64 79 11 13.6 6 7.4
academic credit on any publications. N=81
7. When bio specimens and data are shared with
investigators from high-income countries (e.g., developed 59 72.8 13 16 9 11.1
countries).N=81
8. Whether there should be plans for the high-income
country to enhance the research capacity of the country 60 74.1 14 17.3 7 8.6
that collected the biospecimens. n=81
 10.66 ± 3.4 (10-24) MAX POSSIBLE SCORE IS 24
Total score
It will be 8-24
Table 5 reverse Coded yes =3 I don’t know = 2 and No = 1

Minimum scoring is 1 and there are 8 statements so the lowest range would be 8. Maximum scoring is 3 and
the total statements are 8 so the highest range would be 24

Table (6): Opinions regarding engaging the community in the practices of a biobank
Not Important No opinion Important
Question
N % N % N %
1-Members of the community should have a role in making
8 9.8% 1 1.2% 73 89.0%
decisions about the biobank research activities. N=81
2-The community should be updated regularly about the
research activities of the biobank (e.g., press releases, 7 8.70% 0 0% 76 91.6%
website updates).N=83
3-There should be input on the range of community
6 7.2% 3 3.6% 74 89.2%
concerns about genetics research N=83
4-The community should assist in reviewing protocols and
provide feedback on potential barriers to participation in 16 19.3% 1 1.2% 66 79.5%
the research. N=82
5-A meaningful role for a community body should be
8 9.8% 2 2.4% 72 87.8%
considered in the governance of biobanks N=82
6 No specific role is necessary as the biobank’s REC can
represent the community
21 25.3% 15 18.1% 47 56.7%

13.00 ±4.8 (6-18) MAX POSSIBLE SCORE IS 18?

Total
Range will be from (6-30)
Statement 6 reverse coded

BIVARIATE TABLE
MEAN SCORE OF SECTION-H AND SECTION-K

MEAN SCORE P-value MEAN SCORE P-value

OF MATERIAL OF
TRANSFER COMMUNITY
AGREEMENTS ENGAGEMENT
SECTION-H SECTION-K
Country Egypt 10.0±3.1 0.03 23.3±4.6 0.15
Jordan 10.3±2.0 20.3±4.6
Sudan 11.4±3.8 22.5±4.5
Morocco 13.3±4.0 19.9±5.9

Gender Male 10.36±3.0 0.47 22.3±4.8 0.40

Female 10.9±3.6 23.2±4.8
Degree Graduation 10.4±3.1 0.48 22.7±5.0 0.78
 PhD 11.0±3.7 23.0±4.6
Faculty Rank Lecturer 10.7±3.0 0.91 23.6±3.8 0.38
Professor 10.6±3.8 22.6±5.0
Ever Heard Yes 10.5±3.3 0.70 23.2±4.6 0.07
term biobank No 11±4.1 20.5±5.6
Biobank in Yes 10.7±2.8 0.88 21.6±6.6 0.32
Institution No 10.6±3.5 23.0±4.4
REC reviewed Yes 10.7±3.8 0.72 22.8±5.0 0.96
protocols No 10.5±3.0 22.8±4.8
involving
biospecimens
REC reviewed Yes 10.6±3.6 0.94 23.4±4.7 0.14
protocols No 10.6±3.0 21.8±5.0
involving
genetic
research

REC < 2 years 10.2±3.2 0.43 23.0±4.1 0.96

Membership > 2 years 10.8±3.5 23.1±4.9

BIVARIATE ANALYSIS

We would like to obtain your opinion regarding the type of consent that should be used when
collecting bio specimens for future unspecified research. Please choose which type of
consent would be acceptable.

BROAD P- TIERED P- SPECIFIED P- DYANAMIC P-

CONSENT value CONSENT value CONSENT value CONSENT Value
Country Egypt 0.314±0.46 0.85 0.259±0.44 0.65 0.277±0.45 0.87 0.314±0.45 0.62
Jordan 0.333±0.57 0.333±0.57 0.333±0.57 0.00±0.00
Sudan 0.300±0.48 0.200±0.42 0.200±0.42 0.200±0.42
Morocco 0.181±0.40 0.090±0.30 0.363±0.50 0.272±0.46

Gender Male 0.351±0.48 0.26 0.324±0.47 0.06 0.297±0.46 0.88 0.189±0.39 0.11
Female 0.239±0.43 0.152±0.36 0.282±0.45 0.347±0.48
Degree Graduation 0.325±0.47 0.70 0.279±0.45 0.42 0.279±0.45 0.94 0.232±0.42 0.69
PhD 0.285±0.45 0.200±0.40 0.285±0.45 0.285±0.45
Faculty Rank Lecturer 0.266±0.44 0.79 0.300±0.46 0.24 0.200±0.40 0.26 0.233±0.43 0.70
Professor 0.295±0.46 0.181±0.39 0.318±0.47 0.272±0.45
Ever Heard Yes 0.314±0.46 0.30 0.271±0.44 0.04 0.228±0.42 0.01 0.285±0.45 0.80
term biobank No 0.166±0.38 0.000±0.00 0.583±0.51 0.250±0.45
Biobank in Yes 0.285±0.46 0.95 0.285±0.46 0.60 0.285±0.46 0.96 0.214±0.42 0.55
Institution No 0.294±0.45 0.220±0.41 0.279±0.45 0.294±0.45
REC reviewed Yes 0.292±0.46 1.00 0.243±0.43 0.79 0.341±0.48 0.22 0.243±0.43 0.46
protocols No 0.292±0.46 0.219±0.41 0.219±0.41 0.317±0.47
involving
biospecimens
REC reviewed Yes 0.196±0.40 0.01 0.294±0.46 0.08 0.235±0.42 0.24 0.294±0.46 0.72
protocols No 0.451±0.50 0.129±0.34 0.354±0.48 0.258±0.44
involving
genetic
research

REC < 2 years 0.357±0.48 0.27 0.321±0.47 0.23 0.214±0.41 0.32 0.214±0.41 0.24
Membership > 2 years 0.240±0.43 0.200±0.40 0.320±0.47 0.340±0.47

REGRESSION ANALYSIS

MATERIAL TRANSFER AGREEMENTS SECTION-H Unstandardized B P value

(95%CI)
COUNTRY EGYPT 0.038(-3.046-3.123) 0.98
JORDAN 0.333(-4.47-5.14) 0.89
SUDAN 1.40(-2.20-5.00) 0.44
MOROCCO 3.36(-0.190-6.91) 0.06
COMMUNITY ENGAGEMENT
SECTION-K
COUNTRY EGYPT -2.848(-7.270-1.570) 0.204
JORDAN -5.867(-12.77-1.042) 0.095
SUDAN -3.70(-8.88-1.481) 0.159
MOROCCO -6.29(-11.3-(-1.189)) 0.016
Ever Heard Term Biobank -2.181(-5.446-1.084) 0.000
Rec Reviewed Protocols Involving Genetic Research -1.026(-3.406-1.353) 0.393
BROAD CONSENT
Rec Reviewed Protocols Involving Genetic Research 0.256(0.055-0.456) 0.01
TIERED CONSENT
Rec Reviewed Protocols Involving Genetic Research -0.165(-0.355-0.025) 0.08
SPECIFIED CONSENT
Ever Heard Term Biobank 0.120(-0.085-0.324) 0.24
DYANAMIC CONSENT
Gender 0.159(-0.037-0.355) 0.11

Importa Very
No Not Slightly
nt Import
Question Opinion Important Important
ant
N % N % N % N % N %
1-Members of the community should have a 1 1.2% 8 9.6% 10 12% 18 21. 45 54
role in making decisions about the biobank 7% .2
research activities. N=81 %
2-The community should be updated regularly 28 33. 35 42
about the research activities of the biobank 0 0% 7 8.4% 13 15.7% 7% .2
(e.g., press releases, website updates).N=83 %
3-There should be input on the range of 31 37. 32 38
community concerns about genetics research 3 3.6% 6 7.2% 11 13.3% 3% .6
N=83 %
4-The community should assist in reviewing 26 31. 29 34
19.3
protocols and provide feedback on potential 1 1.2% 16 11 13.3% 3% .9
%
barriers to participation in the research. N=82 %
5-A meaningful role for a community body 30 36. 26 31
should be considered in the governance of 2 2.4% 8 9.6% 16 19.3% 1% .3
biobanks N=82 %
6 No specific role is necessary as the biobank’s 21 25. 15 11
REC can represent the community 19.3 24.1 3% .1
16 20 11 13.3%
% % %

22.85 ± 4.87
Total
 We would like to obtain your opinion regarding the type of consent that should be used when
collecting bio specimens for future unspecified research. Please choose which type of
consent would be acceptable.

BROAD P- TIERED P- SPECIFIED P- DYANAMIC P-

CONSENT value CONSENT value CONSENT value CONSENT Value

Country Egypt 16 0.88 13 0.69 15 0.86 16 0.67

Jordan 1 1 1 0
Sudan 3 2 2 2
Morocco 2 1 4 3

Gender Male 12 0.38 12 0.06 11 0.88 6 0.05

Female 11 7 13 16
Degree Graduation 13 0.87 11 0.78 12 0.94 10 0.80
PhD 10 8 10 9
Faculty Rank Lecturer 8 0.78 9 0.34 7 0.42 6 0.47
Professor 13 9 14 12
Ever Heard Yes 21 0.34 19 0.03 16 0.01 19 0.87
term biobank No 2 0 7 3
Biobank in Yes 4 0.96 4 0.59 4 0.96 3 0.61
Institution No 19 15 19 19
REC reviewed Yes 11 0.80 10 0.79 13 0.46 9 0.31
protocols No 12 9 10 13
involving
biospecimens
REC reviewed Yes 9 0.00 15 0.08 12 0.24 14 0.87
protocols No 14 4 11 8
involving
genetic
research

REC < 2 years 10 0.19 10 0.08 7 0.63 6 0.32

Membership > 2 years 11 9 15 16