A summit in Cambridge, Massachusetts, and a special issue of The CRISPR Journal featured a diversity of voices advocating for a broader debate in the name of cosmopolitanism and participation. How relevant is the call?

The Asilomar Conference, which 50 years ago marked a pivotal moment of collective reflection on the frontiers of genetics? Too technocentric, some argue. The three International Summits on Human Genome Editing that accompanied CRISPR’s rise from 2015 to 2023? Too utilitarian, they say. The proposed counter-model is the Global Observatory for Genome Editing, a think tank founded in 2020 by Sheila Jasanoff, which at Harvard explores the dynamics of science and technology through the lenses of sociology, anthropology, and law. Backed by a $2 million grant from the Templeton Foundation, it calls for new spaces for religious, multicultural, and non-scientific perspectives. But what exactly are they proposing?

The idea for the Global Observatory was launched in Nature in 2018, in an article by Jasanoff and the Observatory’s co-founder, bioethicist Benjamin Hurlbut. Inspired by international networks of scholars and organizations working on climate and human rights issues, the initiative quickly sparked interest, along with some skepticism. Five years after its official launch, we must admit that its original ambitions remain far from fully realized. Still, the think tank is actively promoting opportunities for interdisciplinary dialogue. These include the most recent conference held May 21–23 in Cambridge and a collection of 18 articles published simultaneously in The CRISPR Journal.

Typically, debate flows from science to ethics. It starts by mapping out what CRISPR can and cannot do, the risks and benefits of its potential applications, and the technical and scientific hurdles in the way forward. Only then does the discussion move toward bioethical concerns: Is it acceptable to modify the genome in a heritable way? Where do we draw the line between normal and pathological? How can the technology’s potential be harnessed to benefit the greatest number of people? According to the editorial and the statement, the Observatory aims to reverse this logic, placing at the center, from the outset, “questions about the meaning of human (and non-human) life, asking how these meanings are likely to be altered through genome editing technology and why we might care”. They follow four guiding principles: moving away from the “science-and-technology first” approach, broadening the range of questions to be asked, reconsidering who stands to gain and who to lose, and reimagining the boundaries of research.

This is a philosophical and programmatic framework that, by its nature, does not anticipate reaching a general consensus. Still, despite its apparent vagueness, it may offer some food for thought. One example, from the CRISPR Journal’s collection, is the analysis of the CRISPR babies’ scandal, written by Jane Qiu. According to the Chinese science journalist, this experiment—scientifically flawed and ethically indefensible—was not an isolated Frankenstein case nor was it entirely attributable to China’s specific context, but rather a product of international scientific dynamics.

Very timely is the double interview with Fyodor Urnov and Kiran Musunuru, two pioneers of genome editing involved in the difficult quest to make treatments for rare and ultra-rare diseases feasible and accessible, in spite of regulatory hurdles and poor profitability. Both were key figures in the most recent breakthrough in personalized medicine: a custom base-editing intervention developed in just six months for a newborn with a severe metabolic disorder.

The catchy title Starlink Medicines in Jurassic Healthcare Systems – Are we ready? introduces a perspective that further explores how cutting-edge therapies (expensive but potentially curative with a single dose) struggle to gain traction within healthcare frameworks designed for chronic diseases.

Finally, the contribution by John S. Dryzek provides a chance to reflect on the current state of participatory democracy initiatives. In 2020, he was the lead author of a proposal published in Science to establish a global deliberative assembly on genome editing. The idea was for a representative group of participants to determine the rules for research—what to ban, allow, or fund. However, the proposal remained theoretical, likely because bringing together people from around the world for long enough to debate the many possible applications of a cross-cutting life science technique (from medicine to agriculture) is a daunting challenge.

To date, there has been only one similar case: the Global Climate Assembly, held online in 2021. More localized genome editing initiatives have taken place in Australia, Brazil, China, and the UK. The latter is particularly worth highlighting: the UK Citizens’ Jury on Human Genome Editing, held in 2023, involved only people with genetic conditions and their families. This jury responded yes to the question posed—”Should the UK government consider changing the law to allow intentional genome editing of human embryos for serious genetic conditions?”—and the experience was documented in an intense movie.

(translated and adapted from an article by Anna Meldolesi in Osservatorio Terapie Avanzate)