A new landscape for CRISPR?

Over the next two years, via a series of stakeholder meetings and online consultations, talks with ethicists, academics, patient groups, and social scientists a World Health Organisation (WHO) panel, must deliver fresh ideas for a comprehensive governance framework.

Dr Soumya Swaminathan, WHO chief scientist, speaking before the case in China, said: “The panel will develop essential tools and guidance for all those working on this new technology, to ensure maximum benefit and minimal risk to human health.”

But can her proposed global registration system for research work? Some believe the stable door is wide-open and the horse is a long way down the road.

‘Horrifying’ research
He Jiankui and two associates were convicted of experimenting using the CRISPR technique on human embryos. He had defied a Chinese Government ban on such experiments.

News of a three-year jail term for a reportedly gifted but wayward scientist, will reignite the debate about the need for early regulatory action. It will be a relief for those ethical concerns and disturb those with a desire push the envelope. The court in Shenzhen stated Jiankui had acted in the pursuit of personal fame and gain. He and his colleagues had seriously “disrupted medical order”, according to the Xinhua news agency. “They crossed the bottom line of ethics in scientific research and medical ethics.”

In addition, serious doubts remain about whether He’s methods and his aim – to impart HIV immunity into two IVF created human embryos – had been achieved or if success was provable. 

Jennifer Doudna is credited with so much early work on the editing tool (CRISPR) discovered in the mechanism of an immune system found in bacteria. She helped show how that mechanism could be harnessed to edit DNA but has yet to respond to the outcome of the trial.

When Jiankui announced he had dabbled with two embryos using CRISPR and allowed them to go to term, Doudna and many others in the field, expressed shock and dismay.

She said: “The twins now have changes to their DNA that have never been tested. It’s a really profound thing to think about.

“When I was sitting in the audience of that meeting in Hong Kong where it was announced, I literally had the hairs on my neck were standing up. It seemed so horrifying.”

The global backlash about the ethics of He’s experiments was swift and widespread. He and his collaborators had apparently forged ethical review materials and recruited men with AIDS, who were part of a couple, to gather samples to carry out the gene-editing.

His experiments ultimately resulted in women giving birth to not only the twins, but a third baby, according to press reports. These individuals will need to be scrutinised by scientists for their entire lifespan. The implications for the future of their emotional wellbeing, as well as their physical health, are mind-blowing.

Some sympathy?
He Jiankui might be in a prison cell, but there are those who have some sympathy for him. Dr Ben Hurlbut, of Arizona State University, a biomedical historian recalled conversations in 2017 he had with He Jiankui about the ethics of gene editing especially embryo experiments.

Hurlbut does not support what He did, but came away with an impression of He as a well-meaning and thoughtful scientist and not a “rogue.” What also emerged from the conversations, was the widespread ignorance in China about gene editing. There was certainly little or no discussion about ethical issues.

Hurlbut told the science news website STAT. “He comes from a culture that ‘puts a premium on provocative research, celebrity, national scientific competitiveness, and firsts.”

He defended himself to Hurlbut by referencing a survey in his own country. It showed 73 per cent of the Chinese people supported genome editing to prevent HIV infection. And not surprisingly 95 per cent of those with HIV did. The survey did not ask about “embryo editing” however.

“Clearly, He recognised that his work would be controversial,” Ben Hurlbut told STAT. “But for all the unease and even outright condemnation from his scientific colleagues, his actions reflect, partly, motivations that are widespread in the conduct of science.”

And, its true that in the past other high-profile figures have expressed the view that bio-ethicists should stand back. Back in 2015, psychologist Steven Pinker wrote an essay in the Boston Globe telling bio-ethicists to “get out of the way”. Scientists, he argued, should just do whatever they want.

According to Pinker: “A truly ethical bioethics should not bog down research in red tape, moratoria, or threats of prosecution based on nebulous but sweeping principles such as dignity, sacredness, or social justice.”

“Of course, individuals must be protected from identifiable harm, but we already have ample safeguards for the safety and informed consent of patients and research subjects.” This was, it is impotant to note, before the controversies over He’s research was known about.

‘Too late’ for ban
He’s research pushes the envelope. It seeks to have a significant impact and aims to make headlines and earn recognition. Yet the Chinese courts have not cut him any slack. It could be they have responded to global outrage.

It may be time to talk about where the red lines need to be drawn in respect of CRISPR gene/embryo editing. No one with any interest can accept that CRISPR technology has been hit by its last grenade. What revelations lie ahead?

Over time He’s experiment may become no more than a historical blip on the road to finding a response to severe inherited diseases.

Jennifer Doudna says: “We have to acknowledge there is interest in using CRISPR clinically.”

To those calling for a moratorium or an outright ban on such research, she has a simple response: “It’s too late.” 

Author:
Dermot Martin is a freelance science writer