An African perspective on gene editing

Scientists have the power to change our DNA, but should they? University 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 will develop a framework for just how far gene editing should reach.

Sickle cell disease is a genetic condition most prevalent in sub-Saharan Africa. Instead of producing round red blood cells, patients have crescent-shaped blood cells. It’s a painful, life-threatening disease. And there is no cure, yet.

Gene editing has the potential to cure sickle cell disease. Scientists could edit the disease-causing mutation in a patient’s DNA so that they start to produce healthy, round blood cells. The disease would then disappear.

If researchers were allowed to edit DNA to improve health, could they not also edit DNA to improve cognition and appearance, or to enhance abilities?

Although we’re not yet able to do this, if researchers did find a way, there would likely be some who would oppose this intervention. And if researchers were allowed to edit DNA to improve health, could they not also edit DNA to improve cognition and appearance, or to enhance abilities? Should gene editing be done in embryos or in adults, and who should have access to the technology?

“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 is among its 19 members from across the globe. She brings more than a decade’s worth of experience in bioethics and a powerful voice for African researchers and policymakers.

Rogue science

Following an initial meeting in March, the board will meet again at the end of August 2019. It has set the ambitious target of releasing its first recommendations by this time next year.

If that seems like a quick turnaround time, it’s true. Given the 2018 announcement by Chinese scientist He Jiankui that he’d successfully edited the genes of twin girls to protect them against HIV infection, there is urgency around the need for these guidelines. The panel was set up in response to this.

“He [Jiankui] acted like a rogue scientist and brought home to a lot of people the urgency of thinking critically about how, as a global population, we want these technologies to develop.”

He’s use of the powerful gene-editing tool CRISPR on human embryos sent shockwaves through the scientific community, which had up till then believed that no-one would be so bold to do so.

“He acted like a rogue scientist and brought home to a lot of people the urgency of thinking critically about how, as a global population, we want these technologies to develop,” says De Vries.

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.”

Russian scientist Denis Rebrikov also recently announced his plans to use CRISPR to gene edit more babies, putting greater pressure on the panel to issue its guidance.

Ethical leadership

“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.

“This is why the technology is so tricky, because you edit the human gene stock forever.”

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 panels’ initial meeting – that will underpin its recommendations are transparency, inclusivity and responsibility.

According to De Vries, this is the first time the WHO has taken an ethical leadership role. “The WHO has traditionally been very good at setting standards for how diseases ought to be treated. This is the first time the WHO has called together a panel of experts to consider normative aspects of health technologies.”

Beyond a moratorium

The panel’s regulations will go beyond the knee-jerk reaction of placing a moratorium on gene editing, although such a move has been proposed. De Vries says a decision like this may overlook the technology’s full potential.

“A moratorium could set us on a course for regulation where the decision is never to use gene editing, although at some point you may have a valid consensus to use it,” she says. (Consider the sickle cell anaemia case above.) Then recommendations should be in place to regulate it. 

The panel’s goal is to issue a roadmap about good decision-making that may allow human gene editing’s safe and effective use.

“This will include the values that should guide the use of the technology, the ethical considerations that should inform governance and a specific framework that could help regulate its use,” she says.

The guidelines won’t be enforced by the WHO, though. Instead, it will be left to health ministries and policymakers to design legislation that follows its guidance. “Enforcement comes at the national level, where countries need to ensure their legislative frameworks are fit for purpose,” says De Vries, who is confident the panel’s recommendations will be adopted.

The panel’s goal is to issue a roadmap about good decision-making that may allow human gene editing’s safe and effective use.

“The power of the WHO is that it very often sets regulations that are adopted in national policies across the world.”

Africa needs a voice

In Africa, issues of ethics and the social implications of genetic research have recently come to the forefront.

“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.

That has changed recently with the establishment of the Human Heredity and Health in Africa (H3Africa) consortium, where De Vries is a collaborator.

“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.”