Editor's Note: This article originally appeared in Around the O. Leah Lowthorp is a CSWS faculty affiliate.
A University of Oregon cultural anthropologist is among a 21-member group of international researchers and public-interest advocates who have published a strong, cautionary statement about the use of genome editing in human embryos.
The statement emerged from a discussion about public engagement and governance of heritable human genome editing, which has risen into public debate by the gene-editing tool known as CRISPR, at a January 2019 workshop held in Geneva, Switzerland.
Leah Lowthorp, assistant professor in the UO’s Department of Anthropology, was a co-organizer of the workshop while with the nonprofit Center for Genetics and Society under a two-year public fellowship funded by the American Council of Learned Societies and Andrew P. Mellon foundation.
"Our Geneva statement aims to stimulate a new type of international dialogue around a pressing global issue, especially after the 2018 birth of gene-edited babies in China,” said Lowthorp, who joined the UO in 2018.
“It aims to raise the social justice implications of the technology and to call for both public inclusion and empowerment,” she said. “It’s an important reminder that the conversation needs to focus on if, not when or how, we as a global society will allow the genetic modification of future generations.”
The workshop brought the voices of social scientists, ethicists, life scientists, policy experts and public interest advocates into a conversation long dominated by scientists and bioethicists.
The “Geneva Statement on Heritable Human Genome Editing: The Need for Course Correction,” is online ahead of print in the April 1 issue of the journal Trends in Biotechnology. It takes issue with misunderstandings and distortions that appear in public discourse about gene-editing technology. The authors urge the use of accurate information to clarify misconceptions, a meaningful exploration of social justice and human rights implications, and public involvement in decision-making.
Lowthorp, also a core member of the UO’s Folklore and Public Culture Program, was the primary author on the grant that led to the workshop, which was hosted by the Switzerland-based Brocher Foundation.
“I was drawn to the Center for Genetics and Society by its social justice mission, its aspirations to impact public policy and a personal interest in genetics,” she said. “One of my main tasks there was to track international policy conversations on heritable human genome editing with the ultimate aim to assess and influence policy.”
At the UO, Lowthorp is leading a project, based on her time at the center, on the online folklore of human genetic and assisted reproductive technologies. In a 2018 paper in the Journal of American Folklore, “#CRISPRfacts, Gene Editing, and Joking in the Twittersphere,” she explored the relationship between the hyperbole and public skepticism of scientific claims related to CRISPR technology.
“From a folklore perspective, examining social media narratives about heritable human genome editing is a way to gauge the wider public's reaction to science and its real-world implications,” she said. “Social media is also one possible avenue of facilitating the public empowerment called for in the Geneva statement.”
More generally, Lowthorp’s research explores art as a window onto culture by analyzing the interplay of vernacular performance with social, economic and political change in an ever-shifting modern world.
—By Jim Barlow, University Communications