On 22 May 2018, Professor Annelize Nienaber, Head of the Department of Public Law in the Faculty of Law at the University of Pretoria, presented her inaugural address as appointed Departmental Head on ‘Meaningful knowledge? Law and ethics in postgenomic gene-therapy research’.
Below a brief summary of her presentation:
'New ‘gene-editing’ techniques such as CRISPR potentially will enable scientists to engineer precise changes in the human genome – a feat unimaginable in the previous century. 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.
Now is the time to recall the lessons learnt from the history of clinical research: lessons of scientific, philosophical and ethical import. These lessons include those learnt from the death of Jesse Gelsinger in 1999 from complications due to the administration of an investigational product in a liver gene-therapy clinical trial.
The paper draws on the history of clinical research in order to suggest a reassessment by South African research ethics committees of concepts traditionally used in the evaluation of clinical research, including concepts such as ‘consent’, ‘risk’ and ‘justice’, so that gene-therapy research that will produce meaningful knowledge may be promoted.
It asks what constitutes meaningful knowledge in post-genomic gene-therapy research and the circumstances in which knowledge is meaningful to scientists, research participants or their communities.'
A comprehensive article on this topic is currently being prepared for publication.
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