Weekend Argus (Saturday Edition)
Perils of gene editing
Ethics remain unclear
IN THE not-too-distant future, babies will be made through science instead of sex and we will live in an age of genetically modified humans.
According to American technology futurist and Hacking Darwin author Jamie Metzl, it’s inevitable science will soon be advanced enough to make human gene editing, not only possible, but widespread.
The difficult question is whether humans will be able to use this power fairly and ethically.
“We happen to be born in a time when our species suddenly has the ability to remake all of life on earth. It’s this awesome responsibility,” Metzl said.
He addressed UCT medical students at Groote Schuur Hospital this week as part of his work on the Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing. The panel was established to advise the World Health Organisation (WHO) on how to chart an ethical way forward into the age of gene-edited humans, which has already begun.
At the end of 2018, Chinese scientist He Jiankui announced that he had created the world’s first gene-edited babies. As a result, the WHO gathered a committee of 20 experts from around the world, including two South Africans: Justice Edwin Cameron, who is chair of the committee, and associate professor of bioethics Jantina de Vries, from UCT.
“We are increasingly developing the tools to rewrite our code of life,” Metzl said. “The reason our committee is here is because we don’t yet have rules of the road to figure out how can we optimise the good stuff and minimise the harms.
“Whatever we do, this science is moving forward extremely rapidly. We’re in the middle of a revolution.”
Metzl believes that it will soon be commonplace for every baby born in a hospital to have its entire genome sequenced. From this information, parents may be advised on what diseases or genetic conditions their child is at higher risk for, and what attributes and aptitudes the child could possess.
“Soon, whole genome sequencing will just be a normal part of being born in any kind of legitimate hospital,” Metzl said.
But even before birth, the existing technologies of in vitro fertilisation and embryo screening could offer parents the unprecedented choice of selecting gene edits to be done before the embryo is implanted in the mother’s uterus.
“I believe we’re going to see a greater shift towards conception through science, because conception through sex brings with it the bugginess of human biology,” he said
If you were a prospective mother, and you were given the option to choose from a range of your own fertilised embryos to implant in your uterus, you’d probably choose one that won’t result in your child being at high risk of dying young from a genetic disease.
This seems obviously beneficial, but it doesn’t end there: it would also be possible to select for certain traits that the parent decides are desirable.
Professor Ntobeko Ntusi, head of the department of medicine at UCT, said it is precisely this line that becomes difficult to draw.
“If you are a mother who wants to have a child who is tall, or has red hair, or is intelligent, or can play the violin – where do we draw the line? Where do you consider it appropriate to interfere with embryos where the consequences will affect generations ad infinitum?”
Ntusi said the technology could have clear benefits in conditions such as sickle cell anaemia, which is caused by a mutation on a single gene and could potentially be eradicated through editing.
“It’s clear to many that the promise of genomic editing has a huge value to society. It can change lives and reduce suffering for many. But the long-term effects remain unknown. We cannot gain informed consent from our patients if we do not know the long-term consequences.”
Ntusi also warned about the devastating disparities it could cause if only the wealthy had access to creating children free of genetic disease and edited for the most desirable traits. Metzl agreed on this risk.
“The consequences of unequal access could be huge,” he said.