Championing Ethical Dialogue in Human Genetics

As Chairperson of the Southern African Society for Human Genetics (SASHG), Dr Lisa Roberts, Senior Research Officer in the Division of Human Genetics UCT, recently led a timely initiative to foster national dialogue around the highly debated updates to the National Human Research Ethics Council (NHREC) guidelines on Heritable Human Genome Editing (HHGE).

Recognising both the concern within the scientific community and the global scrutiny these changes attracted, she convened a landmark Indaba event in December 2024, bringing together leading South African voices in human genetics, law and bioethics. The multidisciplinary panel of experts offered invaluable insights to 120 attendees and participants engaged in meaningful dialogue and debate. Following this engagement, the SASHG committee released a consensus statement reflecting the collective views of its members and panelists.

One of the most constructive outcomes was the active participation of members from the NHREC who attended the Indaba. This spirit of engagement continued beyond the event and, following further discussions, NHREC released Version 3.1 of its 2024 Ethics Guidelines, withdrawing the controversial section on HHGE and calling for broader stakeholder engagement moving forward.

“This outcome underscores the critical role of a well-informed and responsive professional society”, Lisa notes. “Our SASHG community has a wealth of knowledge, and I’m grateful to our expert panelists for deepening our understanding of the critical issues. I also respect and appreciate the NHREC for their openness and commitment to dialogue while they work to protect the rights, safety and welfare of researchers and research participants. I’m pleased the Indaba launched such collaborative conversation, as our collective mission is to ensure improved health and wellness through human genomics research that is ethical, scientifically rigorous and socially responsive”.