Our research
approach
Driven by an ethos of collaboration and community engagement, our approach to research is inclusive and interdisciplinary. We ensure that we capture the unique voices of diverse stakeholders, including healthcare professionals, researchers, policymakers, and most importantly, the communities we serve. Currently, we are focusing on engaging with the sickle cell disease community, the Deaf community and the African university/scientific community.
We explore the experiences of families with inheritable genetics conditions in different population groups. Our team investigates families in:
- Vulnerable communities such as those affected by hearing loss;
- Communities living with diseases with a high burden in Africa such as Sickle Cell Disease;
- Communities living with rare genetic conditions associated with intellectual disability, gendered blame and stigma (Fragile X syndrome).
PUBGEM-Africa will analyze existing data protection laws and identify stakeholder responsibilities in the use of big data for genomics medicine. We will investigate public perceptions and attitudes towards governance of big data and perceptions on the use of aggregated big data.
Normative analysis & Desktop analysis
Normative analysis: When you use knowledge gained on a specific topic to provide more insight and value-based view on how things should be.
Desktop analysis: Gathering information and insights by analyzing and combining data and sources that already exist. Such sources include books, reports, surveys, journals, and podcasts.
Surveys
Surveys: A set of specific fixed questions, normally with a few answers to choose from, which are asked completed by many people to gather information about what most people do or think about something.
Focus Group Discussions and In-depth Interviews
Focus Group Discussions: A small group of people who contribute to open discussions on specific topics for research. Individuals in the group share their feedback, opinions, knowledge, and insights about the topic.
In-depth Interviews: Interviews conducted individually to thoroughly explore an individual’s point of view, experiences, feelings, and perspectives on a specific topic.
Develop governance frameworks
Governance frameworks are general leadership accountabilities consisting of rules, processes, roles, and responsibilities which are used to manage a system or project.
Develop models for public engagement
Public engagement is when members of the public are informed, listen to and engaged with, about matters of their interests, opinions, concerns and ambitions and are included in decisions that impact them.
Analysis of data laws & interviews
Analysis of data laws: Data laws specify how data should be collected, stored, and shared with third parties. Data laws protect research participants by requiring organizations to keep their data safe.
In-depth Interviews: Interviews conducted individually to thoroughly explore an individual’s point of view, experiences, feelings, and perspectives on a specific topic.