Table 2.
Distribution of categories and topics across documents
| 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) |