Posted on April 01, 2021
On 22 May 2018 Prof. Annelize Nienaber from the department of Public Law delivered her inaugural address.
Herewith an abstract of her inaugural address:
ABSTRACT
... Illness might progressively vanish, but so might identity. Grief might be diminished,
but so might tenderness. Traumas might be erased but so might history. Mutants
might be eliminated but so would human variation. Infirmities might disappear, but so
might vulnerability. Chance would become mitigated, but so, inevitably, would choice.”
Siddhartha Mukherjee The gene: An intimate history (2016) 492. Towards the end of the second decade of the twenty-first century scientists are at the
point of discoveries that source the knowledge flowing from our ability to ‘map’ the
human genome and see it put to use. New ‘gene-editing’ techniques such as CRISPR have
the potential to enable scientists to engineer precise changes in the human genome – a
feat unimaginable in the previous century. Though there is theoretical knowledge we
have little understanding of their fidelity or efficiency in practice or of the consequences
for the human genome. The future for genetic manipulation and of gene-therapy
research is full of promise – foreseeing an end to some of the most devastating of human
disease. In order to derive meaningful knowledge and benefit from the ability to ‘read’ the human
genome and to use gene-editing technologies such as CRISPR we need to reassess the
meaning of concepts such as ‘consent’, ‘risk’ and ‘justice’ in relation to clinical research.
Here at the tip of Africa, in assessing the meaning and value of knowledge gained from
clinical research and its application in gene-therapy techniques, research ethics
committees must take to heart the lessons to be learned from the past of clinical research
and scientific discoveries.
To read the paper or for more information please contact UPA on [email protected]
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