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Table 1 Summary of participant information

From: Consulting communities on feedback of genetic findings in international health research: sharing sickle cell disease and carrier information in coastal Kenya

Role

Total number

Gender M:F

Education (years) range and median

Religiona

SC disease history

Staff: Community facilitators

5

4:1

12-16y 14y

4C/1M

No direct history

Staff: Field workers

12

10:2

12-14y 12y

10C/2M

1 field worker - sister has 2 children with SCD

     

1 field worker - 2 affected children, 2 further children died SCD

Staff: Others b

3

0:3

12-16y

3C

1 data entry clerk - carrier, 2 brothers with SCD, 1 died; carrier child

Health managers

4

3:1

16-18y 16y

4C

No direct history

Chiefs/ assistant chiefs

18

16:2

7-14y 12y

17C/1M

No direct history

KCRs: 5 chair/vice chairs; 4 secretary/vice secretaries; 9 members

18

9:9

3-16y 8y

14C/4M

1 KCR rural area – 1 child with SCD

Community members: affected mothers

3

0:3

6-12y 6y

3C

2 with 2 affected children; 1 with 1 affected child

  1. aC= Christian; M = Muslim.
  2. bTwo data entry clerks and one junior scientist.