Table 3

SickleGenAfrica year 1 focus groups: statements and questions for discussion

CategoryStatements and questions
AutonomyDecisions have to be voluntary and free from coercion.
How would you decide about research participation?
  • Personal/individual.

  • Family member.

  • Head of household.

  • Family elder.

  • Community or religious leader.

  • Other.

Best interest: genomics and sickle cell diseaseMaking a best interest decision about receiving information with potential informational harm regarding:
chances (i.e.risks) of sickle cell complications and organ damage in a patient, and there is no immediate treatment.
  • Would you want to know the chances?

  • Should the patient or caregiver be told?

  • Would it be beneficial?

  • Would it be harmful?

BiorepositorySamples will be stored in a special place called a biobank for many years.
Samples may be used for future research.
  • Do you have any concerns?

Data sharingYour information will be shared with other researchers who are part of SickleGenAfrica and others outside the group.
Your personal information will be removed first, for example, name.
  • Do you want your information to be shared within the SickleGenAfrica group only?

  • Do you want your information to be shared outside the SickleGenAfrica group?

  • Do you have any concerns?

Duty of careWhat does the government need to do for sickle cell patients?
Are there any best practices to adopt?
  • SickleGenAfrica, Sickle Cell Disease Genomics of Africa Network.