An African perspective on gene editing: Scientists have the power to change our DNA, but should they?

An African perspective on
GENE EDITING
Scientists have the power to change our DNA, but should they?
This drawing represents the basis of the
technology, known as CRISPR-Cas9: the
enzyme Cas9 (blue) is bound to a piece of
DNA (yellow) that’s complementary to the
target strand of CRISPR RNA it’s carrying (red).
ILLUSTRATION: DAVID S GOODSELL, RCSB PDB (CC BY 4.0)
“In germline editing you actually change a person
before they’re born and change their offspring.”
niversity of
Cape Town
Associate
Professor Jantina de Vries
is part of the World Health
Organization’s (WHO) recently
established Advisory Board for
Gene Editing, which is developing a
framework for just how far gene editing
should reach.
“For all its incredible potential,
gene editing carries complex ethical
and social questions, the answers to
which could impact the human genome
forever,” says De Vries, an associate
professor in bioethics in the UCT
Department of Medicine.
To help establish parameters around
gene editing and how legislation can
guide its use, the WHO has established
the
Advisory
Board for Gene
Editing. De Vries – who
brings more than a decade’s worth of
experience in bioethics – is among its
19 members.
The panel was set up in response
to the 2018 announcement by Chinese
scientist He Jiankui that he’d successfully
used CRISPR to edit the genes of
twin girls to protect them against HIV
infection.
CRISPR refers to a family of
specialised DNA sequences and an
associated protein (Cas9) that can be
used for germline editing. This is when
genes are edited in an embryo. Both
human germline and somatic editing –
when genes are edited in a living person
– are being considered by the WHO
panel, but it is germline editing that
raises the most cause for concern.
“In germline editing you actually
change a person before they’re born
and change their offspring,” says
De Vries. “This is why the technology
is so tricky, because you edit the human
gene stock forever.
“The work of the panel is to set out
the overall narrative of how to make
decisions about using gene editing and
how to design an appropriate regulatory
framework,” says De Vries.
It is a “challenging task” she says,
that involves first proposing what values
should guide the technology and
then establishing good governance
models. The core principles – decided
on at the panel’s initial meeting – that
will underpin its recommendations
are transparency, inclusivity and
responsibility.
“Decisions about genetic data and
research have been handled on the
continent as an agenda largely driven
by the global north,” says Professor
Ntobeko Ntusi, head of the UCT
Department of Medicine.
“Jantina has skills both in bioethics
and genomics in Africa and understands
the complexities and challenges we face
as a continent,” says Ntusi. “To have her
as part of the WHO panel affirms our
belief that at a global level – where key
policy decisions are taken around the
ethics of genetic research and genetic
material – Africa needs a voice.”
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