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The San people, a small indigenous population living on the southern tip of Africa, whose ancestry lines date back to approximately 100 000 years, carries the oldest living genes in the world, and subsequently the most diversified. It is this diversity that makes their genes so extremely sought after globally for research purposes. The value of the genetic and genomic insights that could be gained from their genetic sequences and the impact it may have on global disease understanding, prevention or management is incalculable. But access to this treasure trove of information has nearly been lost due to broken trust and the failure to obtain consent because of language barriers, illiteracy, scientific misconceptions, aggravated by historical exploitation and discrimination.
In this presentation Marietjie will share her empirical research results where she created a culture centric comic to adequately explain genetic research projects to the San to:
1) successfully bridge communication barriers with researchers;
2) establish a trust relationship with researchers which forms a critical basis for the successful continuance of research projects;
3) enable the San to provide legal and ethical informed consent.
Since then she also applied the lessons she has learnt from this study to projects involving rare disease biobanks, COVID-19 track and tracing apps, and more.
About Dr Marietjie Botes
Dr Botes has exchanged a 20-year career as attorney specialising in the intersection between law and technology in the fields of Health-tech, Fin-tech and Biotech for academia in 2019. She joined the Health Law and Bioethics group of the University of Kwa-Zulu Natal, South Africa as a senior postdoctoral researcher and focused on genetic research regulation, privacy issues relating to health information, data sharing and related intellectual property rights, gene editing and stem cell therapy whilst lecturing Medical Law, Human Rights and Ethical Theories at the School of Health Sciences. Since the COVID-19 outbreak Dr Botes became actively involved in pandemic preparedness and management research, writing the section about the pandemic’s impact on human rights in the Country Report on governmental leadership, governance and the implementation of measures to combat COVID-19 in South Africa. Dr Botes is also serving on the panel of experts of the Academy of Sciences of South Africa (ASSAf) to investigate, advise and write consensus reports on the Ethical, Legal and Social Issues (ELSI) related to Advanced Therapies such as gene therapy and stem cell research.