Who we are
PUBGEM-Africa, which stands for Public Understanding of Genomics and Big Data in Medicine, is a science and society community that committed to ensuring that the voice of the public is heard in discussions surrounding genomics and data science for medicine.
PUBGEM-Africa is part of the bigger initiative called Data Science for Health Discovery and Innovation in Africa
While the promise of genomics and big data in medicine is exciting, it is essential to reflect on the ethical, legal, and social implications (ELSI) of these scientific advancements. At PUBGEM Africa, we recognize the importance of addressing these ELSIs to ensure that genomics and big data in medicine are used responsibly and equitably.
Our mission is to identify ways of addressing some key ELSIs identified in the context of genomics and big data in medicine. This includes amongst others: respecting individual autonomy and privacy ensuring access to genomics for all, preventing exploitation of African population and addressing the global digital divide. By addressing these ELSIs head-on, we aim to foster a more ethical, equitable, and socially responsible approach to the use of genomics and big data in medicine in Africa and beyond.
Our Aims:
Understanding perceptions and attitudes
We investigate models of public engagement and preparedness for big data use in health.
Stakeholder responsibilities
We explore the roles and responsibilities of stakeholders regarding intellectual property, patents, and commercial use of big data in genomics medicine.
Develop governance frameworks
Development of data governance frameworks for big data-driven innovation and health in Africa.
Develop models for public engagement
Assess public perceptions and attitudes towards governance of big data.
ELSI helpdesk
We will establish an ELSI Helpdesk for DSI-Africa projects.
Our Philosophy:
Embracing the Spirit of Harambee
At PUBGEM-Africa, our driving philosophy is Harambee, a Swahili word that embodies the spirit of unity and collective effort. In the spirit of Harambee, PUBGEM-Africa seeks to:
Collaborate
Collaborate across disciplines and diverse communities to ensure that everyone can contribute to discussions on the ethical, social, and legal considerations for genomics and big data in medicine.
Empower
Empower the public and communities to meaningfully engage in discussions on genomics and health data use for research and innovation, ensuring that all voices are heard and valued.
Transform
Transform the way scientists and policymakers approach the field of genomics and big data in ways that are socially and culturally acceptable to the communities they serve.
