This week a diverse group of researchers, bioethicists, publishers and theologians, are gathering in Cambridge, Massachusetts, to extend and expand the rolling debate about the merits of human heritable genome editing (HHGE). The international summit is being hosted by the Global Observatory for Genome Editing, a coalition of interested scholars formed in 2020.
To mark the event, The CRISPR Journal (a sister journal of GEN) is publishing a series of 18 invited Perspectives from a diverse group of authors, many of whom will be presenting at the summit.
In an opening editorial in The CRISPR Journal collection, the Global Observatory organizers—Jacob Moses, PhD, Ben Hurlbut, PhD (Arizona State University), Sheila Jasanoff, PhD (Harvard University) and Kris Saha, PhD (University of Wisconsin)—emphasize the need to include “a wider diversity of human concerns by expanding the range of questions arising at the frontiers of biotechnology.” The goal of the event is to foster “meaningful exchanges between unlikely conversation partners.”
He Jiankui, PhD, displays genome sequences of gene-edited twins, Lule and Nana, at the International Summit on Human Genome Editing in Hong Kong in 2018. [National Academies]
The May meeting follows a trio of international conferences to debate HHGE held over the past decade, beginning in Washington D.C. in 2015, followed by Hong Kong in 2018, and London in 2023. It was at the Hong Kong event in November 2018 that Chinese scientist He Jiankui, PhD (JK) faced public condemnation for his efforts to edit the genomes of two newborns, Lulu and Nana.
The London 2023 conference was highlighted by a maiden public speech from Victoria Gray, the Mississippi woman who volunteered to become the first sickle cell patient in the clinical trial sponsored by Vertex Pharmaceuticals that culminated in the approval of Casgevy, the CRISPR-based cell therapy, in December 2023.
In a Perspective entitled ‘A Reset for Bioethics: A Statement from the Global Observatory for Genome Editing’—the meeting co-organizers note that the focus of those international summits “was on a seemingly revolutionary breakthrough in science and technology [genome editing], not on the conceptions of human and social progress that biotechnology intends to serve.”
They continue: “A very different approach to the ethics of biotechnology would start with disparate understandings of the meaning of being human—cultural, legal, religious, and scientific—as touchstones for guiding advances in biotechnology.”
The organizers of the Global Observatory summit have set four major objectives:
The organizers state that the Global Observatory Summit will explore “multiple understandings of the meaning of being human—cultural, legal, religious, and scientific—and their implications for projects in biotechnology.”
The complete set of 18 Perspectives, one interview and one Editorial, have just been published online and will appear in a special issue of The CRISPR Journal to be published in August 2025.
Here are examples of just some of the more noteworthy contributions:
Sharon Terry (Genetic Alliance), a leading patient advocate, draws on liberation theology to argue that technology must first serve the vulnerable and voiceless.
“We are no longer merely treating disease; we may be reconfiguring what it means to be human and doing so in ways that are heritable and enduring across generations,” Terry writes. “This is not a decision to be made in a laboratory or boardroom. It is not a choice for the affluent few. It must be the product of profound, inclusive, and sustained community discourse.”
She adds: “Once we alter the human germline, we cannot go back. The changes we make—what traits we eliminate or enhance—will reflect our values. And our values, history shows us, are often deeply flawed.”
Canadian bioethicist and author Françoise Baylis, PhD (Dalhousie University) reviews the objectives and conclusions of the three previous international summits on human genome editing and welcomes the prospect of how future deliberation can be made more inclusive of diverse geographic and religious viewpoints.
Baylis provides a forensic review of the deliberations and official policy statements of the conferences as well other high-profile calls for a moratorium on HHGE. She also spotlights the importance of who is in the room when such pronouncements are debated and released.
For example, she asks, what if Nobel laureate David Baltimore, PhD, had not been named Chair of the organizing committee for the First and Second Summits? What if Ed Lanphier or Fyodor Urnov, PhD, lead authors of the 2015 Nature commentary, had been on one or more of the Summit organizing committees? And what if Jennifer Doudna, PhD had joined the 2019 call to “Adopt a moratorium on human heritable genome editing”?
Tim Hunt, JD (CEO, Alliance for Regenerative Medicine), who was at the Hong Kong conference representing Editas Medicine back in 2018, argues that technological improvements in somatic cell therapies may obviate the need for HHGE.
“The biotechnology industry should play an active role in ethics and HHGE. Many of us see HHGE as the bioethical issue of our generation,” Hunt states. On the technical front, Hunt notes that “It would take many generations of non-human primate data to demonstrate that an HHGE technique can safely avert mosaicism… Currently, the technology needed to ensure that HHGE can be proven to be safe does not appear to exist.”
Beijing-based science journalist Jane Qiu recounts how the scandal surrounding the “CRISPR babies” was enabled by a prevailing scientific culture that too easily redrew nationalistic boundaries.
He Jiankui “is a product of an international scientific culture, not merely a Chinese one, that puts premium on competition, sensational research, and being the first at any cost, a culture shaped in part by scientific journals. JK is by no means the first—and unlikely to be the last—of this culture, nor is it a phenomenon unique to the developing world,” Qiu asserts.
Sir Phil Campbell, PhD (Editor Emeritus of Nature), who retired as Editor of Nature in 2018, prior to the “CRISPR babies” scandal, describes how the editorial processes of major scientific journals are involved in validating ethical norms in scientific research.
Stuart Newman, PhD (New York Medical College) has maintained “an unwavering stance” against human germline modification. “As a biologist who has researched the complexities of genotype-phenotype relationships, I remain convinced human genetic modification will always remain in the realm of uncontrolled experimentation,” Newman writes, pointing to the limits of calls for “broad societal consensus.”
Last week, Kiran Musunuru, MD (University of Pennsylvania) and Fyodor Urnov, PhD (Innovative Genomics Institute) made headlines by co-authoring a landmark study using a bespoke base editor to treat an infant with an ultra-rare genetic disorder in record time. The pair gave an exclusive interview to the Global Observatory as they were putting the finishing touches on their groundbreaking report, published in the New England Journal of Medicine.
“These diseases are being overlooked entirely,” says Musunuru. “This puts the onus on the academic sector to fill the gaps and apply validated technologies to tackle these rare scenarios. There is a need, or an opportunity, to apply these same technologies that have now been validated by the companies… and tackle all of these rare and ultra-rare and “n-of-one” type scenarios.”
“Editing is now the fastball of biology to gene therapy,” adds Urnov. “We need new ways to develop, derisk, and commercialize these medicines.”
The CRISPR Journal collection of Global Observatory Perspectives also includes several essays from authors based in India, focusing on ethical viewpoints and healthcare priorities affecting the Global South.
The post Global Observatory Gathers to Expand Debate on Human Genome Editing appeared first on GEN - Genetic Engineering and Biotechnology News.
To mark the event, The CRISPR Journal (a sister journal of GEN) is publishing a series of 18 invited Perspectives from a diverse group of authors, many of whom will be presenting at the summit.
In an opening editorial in The CRISPR Journal collection, the Global Observatory organizers—Jacob Moses, PhD, Ben Hurlbut, PhD (Arizona State University), Sheila Jasanoff, PhD (Harvard University) and Kris Saha, PhD (University of Wisconsin)—emphasize the need to include “a wider diversity of human concerns by expanding the range of questions arising at the frontiers of biotechnology.” The goal of the event is to foster “meaningful exchanges between unlikely conversation partners.”
He Jiankui, PhD, displays genome sequences of gene-edited twins, Lule and Nana, at the International Summit on Human Genome Editing in Hong Kong in 2018. [National Academies]
The May meeting follows a trio of international conferences to debate HHGE held over the past decade, beginning in Washington D.C. in 2015, followed by Hong Kong in 2018, and London in 2023. It was at the Hong Kong event in November 2018 that Chinese scientist He Jiankui, PhD (JK) faced public condemnation for his efforts to edit the genomes of two newborns, Lulu and Nana.
The London 2023 conference was highlighted by a maiden public speech from Victoria Gray, the Mississippi woman who volunteered to become the first sickle cell patient in the clinical trial sponsored by Vertex Pharmaceuticals that culminated in the approval of Casgevy, the CRISPR-based cell therapy, in December 2023.
In a Perspective entitled ‘A Reset for Bioethics: A Statement from the Global Observatory for Genome Editing’—the meeting co-organizers note that the focus of those international summits “was on a seemingly revolutionary breakthrough in science and technology [genome editing], not on the conceptions of human and social progress that biotechnology intends to serve.”
They continue: “A very different approach to the ethics of biotechnology would start with disparate understandings of the meaning of being human—cultural, legal, religious, and scientific—as touchstones for guiding advances in biotechnology.”
The organizers of the Global Observatory summit have set four major objectives:
- Set aside a science-and-technology first approach
- Expand the range of questions under deliberation
- Revisit the distribution of innovation’s benefits and risks
- Reimagine the limits of research
The organizers state that the Global Observatory Summit will explore “multiple understandings of the meaning of being human—cultural, legal, religious, and scientific—and their implications for projects in biotechnology.”
Interesting perspectives
The complete set of 18 Perspectives, one interview and one Editorial, have just been published online and will appear in a special issue of The CRISPR Journal to be published in August 2025.
Here are examples of just some of the more noteworthy contributions:
Sharon Terry (Genetic Alliance), a leading patient advocate, draws on liberation theology to argue that technology must first serve the vulnerable and voiceless.
“We are no longer merely treating disease; we may be reconfiguring what it means to be human and doing so in ways that are heritable and enduring across generations,” Terry writes. “This is not a decision to be made in a laboratory or boardroom. It is not a choice for the affluent few. It must be the product of profound, inclusive, and sustained community discourse.”
She adds: “Once we alter the human germline, we cannot go back. The changes we make—what traits we eliminate or enhance—will reflect our values. And our values, history shows us, are often deeply flawed.”
Canadian bioethicist and author Françoise Baylis, PhD (Dalhousie University) reviews the objectives and conclusions of the three previous international summits on human genome editing and welcomes the prospect of how future deliberation can be made more inclusive of diverse geographic and religious viewpoints.
Baylis provides a forensic review of the deliberations and official policy statements of the conferences as well other high-profile calls for a moratorium on HHGE. She also spotlights the importance of who is in the room when such pronouncements are debated and released.
For example, she asks, what if Nobel laureate David Baltimore, PhD, had not been named Chair of the organizing committee for the First and Second Summits? What if Ed Lanphier or Fyodor Urnov, PhD, lead authors of the 2015 Nature commentary, had been on one or more of the Summit organizing committees? And what if Jennifer Doudna, PhD had joined the 2019 call to “Adopt a moratorium on human heritable genome editing”?
Tim Hunt, JD (CEO, Alliance for Regenerative Medicine), who was at the Hong Kong conference representing Editas Medicine back in 2018, argues that technological improvements in somatic cell therapies may obviate the need for HHGE.
“The biotechnology industry should play an active role in ethics and HHGE. Many of us see HHGE as the bioethical issue of our generation,” Hunt states. On the technical front, Hunt notes that “It would take many generations of non-human primate data to demonstrate that an HHGE technique can safely avert mosaicism… Currently, the technology needed to ensure that HHGE can be proven to be safe does not appear to exist.”
Beijing-based science journalist Jane Qiu recounts how the scandal surrounding the “CRISPR babies” was enabled by a prevailing scientific culture that too easily redrew nationalistic boundaries.
He Jiankui “is a product of an international scientific culture, not merely a Chinese one, that puts premium on competition, sensational research, and being the first at any cost, a culture shaped in part by scientific journals. JK is by no means the first—and unlikely to be the last—of this culture, nor is it a phenomenon unique to the developing world,” Qiu asserts.
Sir Phil Campbell, PhD (Editor Emeritus of Nature), who retired as Editor of Nature in 2018, prior to the “CRISPR babies” scandal, describes how the editorial processes of major scientific journals are involved in validating ethical norms in scientific research.
Stuart Newman, PhD (New York Medical College) has maintained “an unwavering stance” against human germline modification. “As a biologist who has researched the complexities of genotype-phenotype relationships, I remain convinced human genetic modification will always remain in the realm of uncontrolled experimentation,” Newman writes, pointing to the limits of calls for “broad societal consensus.”
Last week, Kiran Musunuru, MD (University of Pennsylvania) and Fyodor Urnov, PhD (Innovative Genomics Institute) made headlines by co-authoring a landmark study using a bespoke base editor to treat an infant with an ultra-rare genetic disorder in record time. The pair gave an exclusive interview to the Global Observatory as they were putting the finishing touches on their groundbreaking report, published in the New England Journal of Medicine.
“These diseases are being overlooked entirely,” says Musunuru. “This puts the onus on the academic sector to fill the gaps and apply validated technologies to tackle these rare scenarios. There is a need, or an opportunity, to apply these same technologies that have now been validated by the companies… and tackle all of these rare and ultra-rare and “n-of-one” type scenarios.”
“Editing is now the fastball of biology to gene therapy,” adds Urnov. “We need new ways to develop, derisk, and commercialize these medicines.”
The CRISPR Journal collection of Global Observatory Perspectives also includes several essays from authors based in India, focusing on ethical viewpoints and healthcare priorities affecting the Global South.
The post Global Observatory Gathers to Expand Debate on Human Genome Editing appeared first on GEN - Genetic Engineering and Biotechnology News.