Ethical Legal and Social Issues with Human Heredity and Health in Africa (H3Africa)
Principal investigator– Community Engagement for H3Africa Biobanking Research: The Tygerberg Model
Phase 1 – Development of an educational tool and interviews with the community & stakeholders.
Development of educational pamphlets and DVD on medical research and biobanking research.
- The educational DVD has been completed and is being used in patient education sessions – see the link below.
- A series of five educational pamphlets have been developed, namely (1) What is Medical Research, (2) What is Genetic Research, (3) What is Genomic Research, (4) What is a Biobank, (5) Questions about Research and Biobanking. These are available in English, Afrikaans and isiXhosa.
- Interviews with community members (in progress), community advisory board (CAB) members (completed and biobank stakeholders (completed).
Phase 2 – Analysis of the interviews and development of key principles and guidelines.
- Forty-one face-to-face interviews were completed with 30 lymphoma patients and 11 CAB members of the Sub-Saharan Africa Regional Biospecimen Repository (SSA RBR).
- The findings from the stakeholder and patient interviews are key to the development of community engagement guidelines. Together with existing literature and community engagement guidelines, these findings will inform the development of the model.
An educational video and
information brochures have been produced to inform patients about biobanking. Please see below.
Educational Video: https://youtu.be/QjSfIA6_bfc
1. What is Medical Research.pdf
2. What is Genetic Research.pdf
3. What is Genomic Research.pdf
4. What is a Biobank.pdf
5. Questions about Research and Biobanking.pdf
Biobanking Activity Book:
What's in the Genes- activity book.pdf
This project entailed the development of a school activity book aimed at grade 12 learners, about genomic research and biobanking.
- The activity book, which is aligned with the Life Sciences school curriculum, presents genomic and biobanking concepts to learners in a fun way, and gathers their views on community engagement in biobanking research.
- The activity book was designed to include quizzes, puzzles, practical activities and an essay writing competition. guidelines, these findings will inform the development of the model.