Master of Laws (LLM) in Medical Law graduate Ms Elemme Wilfred has contributed a distinctly South African perspective to the global debate on Heritable Human Genome Editing (HHGE) – a cutting-edge advancement that raises significant ethical, legal, and social questions.
Her study, titled: ‘A Virtual Deliberative Public Engagement Study on Heritable Genome Editing among South Africans’, was supervised by Professor Donrich Thaldar. It focused on the advanced genetic engineering technology CRISPR-Cas9, often referred to as the ‘genetic scissors’.
This technology enables precise, target-specific edits to the human genome while remaining both cost-effective and efficient. Importantly, it holds significant therapeutic potential, with the ability to correct or prevent serious genetic disorders, such as sickle cell anaemia, cystic fibrosis and muscular dystrophy – and to prevent their transmission to future generations.
“The aim of my research was to include the South African perspective in the ongoing global debate by creating a platform for the informed South African public to deliberate on the future and acceptable applications of HHGE. The study, which was the first of its kind in South Africa, employed a Deliberative Public Engagement approach and qualitative analysis to generate its findings,” explained Wilfred.
She added that, as HHGE is arguably unregulated in South Africa, the study could help inform the development of future laws and policies through evidence-based research.
The study revealed a ‘health-focused risk-benefit’ paradigm, where participants emphasised the need to balance potential health benefits – such as improved quality of life – with the unforeseen risks the technology may pose to individuals and society. The public was more receptive to therapeutic applications of HHGE, provided that appropriate safeguards and regulations were in place to reduce risks and protect vulnerable groups,” said Wilfred.
Wilfred, who graduated with her master’s with distinction plans to pursue a PhD in Medical Law, attained a Bachelor of Laws (LLB) in 2022, earning 24 distinctions, four consecutive Dean’s Commendations, and membership in the Golden Key Society – which recognises the top 15% of academic achievers. She also received certificates of merit in Criminal Law, Labour Law, and Bioethics, achieving the highest result in her class for Bioethics, which led her to pursue a full-research Master of Laws (LLM) in Medical Law.
“My academic achievements, including being awarded the UKZN Postgraduate Scholarship for my final undergraduate year – inspired me to advance in this field, marking the beginning of a journey dedicated to excellence. Based on my postgraduate performance, I was also awarded a subsistence bursary by my research supervisor. Building on this foundation, I plan to pursue doctoral studies and contribute to shaping health policy while promoting ethical practice in the medical profession,” said Wilfred.
Words: Thandiwe Jumo
Photograph: Sethu Dlamini