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Table 3 Relationships between consent preferences, communication frequency and information type

From: Sharing longitudinal, non-biological birth cohort data: a cross-sectional analysis of parent consent preferences

 

Preferred consent model if asked to share their data from their original cohort. Consent should be reviewed…

Each time dataset is shared n(row/column%)

Periodically n(row/column%)

Never n(row/column%)

p-value

Are you interested in receiving information about projects that arise from the study you participated in?

 Yes

73 (24.58/97.33)

92 (30.98/86.79)

132 (44.44/81.48)

0.004

 No

2 (4.35/2.67)

14 (30.43/13.21)

30 (65.22/18.52)

Are you interested in receiving information about the general findings from the dataset you contributed to?

 Yes

68 (22.59/90.67)

92 (30.56/86.79)

141 (46.84/87.04)

0.684

 No

7 (16.67/9.33)

14 (33.33/13.21)

21 (50.00/12.96)

Are you interested in receiving information about the general findings from all the data at the data repository?

 Yes

36 (29.75/48.00)

34 (28.10/32.08)

51 (42.15/31.48)

0.033

 No

39 (17.57/52.00)

72 (32.43/67.92)

111 (50.00/68.52)

Are you interested in receiving information about any changes made to the data repository?

 Yes

35 (25.55/46.67)

49 (35.77/46.23)

53 (38.69/32.72)

0.035

 No

40 (19.42/53.33)

57 (27.67/53.77)

109 (52.91/67.28)

Based on the information you would like to receive, how often would you most like to hear from the data repository?

 Anytime new information arises

30 (34.09/41.10)

17 (19.32/16.04)

41 (46.59/26.11)

0.003

 Every 6 months

23 (23.71/31.51)

33 (34.02/31.13)

41 (42.27/26.11)

 Once a year

18 (13.43/24.66)

52 (38.81/49.06)

64 (47.76/40.76)

 Every other year

2 (11.76/2.74)

4 (23.53/3.77)

11 (64.71/7.01)

Please indicate your most preferred method of contact.

 A personalized email

41 (23.98/55.41)

60 (35.09/57.14)

70 (40.94/43.75)

0.060

 A general newsletter

21 (15.67/28.38)

39 (29.10/37.14)

74 (55.22/46.25)

 A secure, regularly-updated website only open to participants

9 (33.33/12.16)

5 (18.52/4.76)

13 (48.15/8.12)

 A secure, regularly-updated website open to the public

3 (42.86/4.05)

1 (14.29/0.95)

3 (42.86/1.88)