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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.
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