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) |