In his 2021 novel Klara and the Sun, Kazuo Ishiguro painted a disturbing picture of a world where gene editing has become commonplace and carefully outlined the detrimental impact this has on family dynamics, society and the economy.

Through the eyes of a robotic “artificial friend”, Klara, we are told the story of Rick and Josie. Through gene editing, Josie has been “lifted” with genetic enhancement while Rick has not. The consequences are that Josie has fallen ill and Rick is ostracised from society and left with an uncertain future.

The concepts covered in Klara and the Sun were initially reflected on by Ishiguro in his 2017 Nobel Prize lecture. As he said, “And around the corner – or have we already turned this corner? – lie the challenges posed by stunning breakthroughs in science, technology and medicine. New genetic technologies – such as the gene-editing technique CRISPR – and advances in artificial intelligence and robotics will bring us amazing, life-saving benefits, but may also create savage meritocracies that resemble apartheid, and massive unemployment, including to those in the current professional elites.”

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As gene editing unfolds, we are inching closer to the dilemmas posed by Ishiguro. Gene editing allows DNA alteration through removal, insertion or replacement in the human genome with the potential to combat genetic disease or optimise health.

We have already seen how gene editing can effectively treat sickle cell disease. Beyond the benefits and the socioeconomic impact, what are the ethical and indeed legal implications of reframing our creation of humans – are we bordering on eugenics with “designer babies” with the implied risk of marginalising or even eradicating groups? How do we establish gene editing guidelines to ensure the process is ethical? Where do we draw the line?

These questions are becoming even more pressing. Last week, the third International Summit on Human Genome Editing was held in London. The summit outlined how the technology has evolved in the five years since the last summit was held.

For instance, prime editing was introduced, which calls for only a single-stranded cut in DNA instead of the double-stranded cut in current processes. This technique can potentially treat genetic conditions such as Huntington’s disease and Friedreich’s ataxia and is more versatile and precise.

Ugly history

Technology is undoubtedly evolving, and we need to evolve alongside it.

As this technology becomes more entrenched, we must consider various ethical concerns, including humanity’s ugly history of eugenics. The idea of improving the human population through selective breeding is attributed to Francis Galton, who was inspired by Charles Darwin’s theory of natural selection, which explains the mechanism of evolution.

As Galton wrote, “Man is gifted with pity and other kindly feelings; he also has the power to prevent many kinds of suffering. I conceive it to fall well within his province to replace Natural Selection with other processes that are more merciful and not less effective. This is precisely the aim of Eugenics.”

Throughout the annals of history, we have seen the potential for harm.

For instance, between 1933 and 1945, the Nazis embarked on a campaign to “cleanse” German society. This began with the mass sterilisation of persons deemed genetically diseased and ended with the genocide of an estimated six million European Jews based on the dogma of racial science.

Human rights

In December 2018, the World Health Organization (WHO) established a global, multidisciplinary expert advisory committee to examine the scientific, ethical, social and legal challenges associated with human genome editing.

The committee made a set of nine recommendations, including:

• The WHO taking a distinct scientific and moral leadership stance by being open about the opportunities and challenges while acknowledging ethical concerns;
• An emphasis on international collaboration for effective governance and oversight;
• Human genome editing registries that include reviewal and approval by a research ethics committee;
• Human genome editing research should only take place in jurisdictions with domestic policy and oversight mechanisms;
• Encouraging reporting illegal, unregistered, unethical or unsafe research and other activities;
• Determine intellectual property rights;
• Create platforms for education, engagement, and empowerment;
• Create a set of officially endorsed and clearly defined ethical values and principles for use by WHO; and finally
• Periodical reviews of these recommendations should take place to keep up with the pace of technology.

This is a step in the right direction. However, our legislation also needs to respond accordingly. How do we tap into the benefits of gene editing without violating human rights?

In the South African Journal of Science, Donrich Thaldar et al argue that we approach germline editing based on principles derived from the Constitution. Currently, genetic editing is expected to comply with the same laws and ethical requirements as all scientific research relating to human reproduction.

However, the authors argue that principles such as regulation of the process, ensuring the well-established standard of safety and efficacy, measures for allowances of non-therapeutic uses of germline editing, respect for the individual’s reproductive autonomy and equal access, should guide new regulations.

As this technology becomes more entrenched and presents us with new possibilities, we must have the right ethical and legal frameworks in place. A dystopian society reminiscent of the world in Klara and the Sun could be our future if we do not act.

As Ishiguro said in a Financial Times interview, “We have to be concerned about how we reorganise our society around such huge changes.” DM