Skip to main content

Table 2 Distribution of categories and topics across documents

From: A scoping review of genetics and genomics research ethics policies and guidelines for Africa

Category Topic Number of documents containing the category/topic n=36
n (%)
Respect   30(83)
  Consent 27(75)
  What should be included in the informed consent form 8(22)
  Consent procedures 7(19)
  Broad consent 5(14)
  When is broad consent permissible 6(17)
  Withdrawal of consent 5(14)
  Definition of broad consent 4(11)
  Other types of consent 4(11)
  Challenges of the informed consent process 3(8)
  Specific consent 3(8)
  Waiver of consent or no consent 3(8)
  Who determines type of consent 2(6)
  Sensitive to and respectful of African values, cultures, norms and leadership 19(53)
  Transparency 15(42)
  Sharing or disseminating study information 11(31)
  Conflict of interest 1(3)
  Community engagement 9(25)
  Goals of community engagement 5(14)
  Evaluation of community engagement efforts 4(11)
  Prerequisites for community engagement 4(11)
  Acknowledgement of implications of research on the community 3(8)
  Definition of community engagement 3(8)
  When in the research lifecycle should community engagement occur 3(8)
  Who should be engaged 2(6)
  Respect or dignity for participants 7(19)
Beneficence   26(72)
  Potential harms or avoidance of harms 24(67)
  Privacy, confidentiality, security 20(56)
  Minimizing harms 4(11)
  Vulnerable populations 3(8)
  Investigators should seek to understand existing/potential stigma to avoid further harm 2(6)
  Feedback of genetic results 17(47)
  Anticipating/ Planning for return of results 4(11)
  Procedural/Technical requirements before returning results 4(11)
  Challenges associated with providing individual genetic research results 2(6)
  Sharing aggregate results 2(6)
  Sharing individual results 1(3)
  Benefits of research in general 12(33)
  Benefit sharing 3(8)
  Benefits African population 3(8)
  Capacity building 11(31)
  What areas/topics is capacity building required 6(17)
  When is capacity building necessary 3(8)
  Who is responsible for capacity building 3(8)
  What is capacity building 2(6)
  Responsiveness 4(11)
Justice   22(61)
  Managing data and samples 20(56)
  Sample and data sharing 16(44)
  Data rights 8(22)
  Data use agreements 8(22)
  Material or sample rights 8(22)
  Material Transfer Agreements 7(19)
  Export of samples 6(17)
  Intellectual rights 5(14)
  Patents and IP 2(6)
  Sample and data storage 4(11)
  Sample and data storage (not specific to genetics) 6(17)
  Sample re-use 5(14)
  Nondiscrimination 13(36)
  Fairness 6(17)
  Fair distribution of benefits and burdens 3(8)
  Research should be relevant to the population under study 1(3)
  Fair international collaboration 2(6)
Independent oversight   24(67)
  Ethics Review 23(64)
  Role of ethics review 6(17)
  Process of ethics review 3(8)
  Substance of ethics review 1(3)
  Governance framework 7(19)
  Role of government 4(11)
Bans and prohibitions   12(33)
  Cloning 5(14)