When most people think of genome-edited babies, they might think of editing in a test tube. But not former Kavli Center fellow and current faculty affiliate, Julia Brown. As part of her fellowship with the Kavli Center, and in her ongoing work, Julia works as an embedded ethicist and engagement practitioner in a center that is exploring the possibility of fetal genome editing, in utero. Julia shares her perspective and why engaging communities in the ethical debates around prenatal genome editing is important in this piece published in The Conversation.
Editing fetal genomes is on the horizon − a medical anthropologist explains why ethical discussions with the target communities should happen sooner rather than later
Published Aug 16 2024
Julia Brown
Assistant Professor of Humanities & Social Sciences, University of California, San Francisco
With their primary goal to advance scientific knowledge, most scientists are not trained or incentivized to think through the societal implications of the technologies they are developing. Even in genomic medicine, which is geared toward benefiting future patients, time and funding pressures make real-time ethics oversight difficult
In 2015, three years after scientists discovered how to permanently edit the human genome, U.S. scientists issued a statement to halt applications of germline genome editing, a controversial type of gene editing where the DNA changes also transfer to the patient’s future biological descendants.
The scientists’ statement called for “open discussion of the merits and risks” before experiments could begin. But these discussions did not happen.
By 2018, at least two babies had been born from germline editing with embryos that had been genetically modified in China. With no preemptive ethics or clear regulatory guidance, you get the occasional “cowboy scientist” who pushes the boundaries of experiments until they are told to stop.
After finding out about the babies, scientists continued to talk – but mostly among themselves. Then in 2020, an international commission report that brought together expert views resounded the same call for societal discussions about whether germline editing could be ethical.
I’m a medical anthropologist and bioethicist who studies the values and experiences driving prenatal gene therapy developments, including genome editing.
Human prenatal genome editing has not happened yet – as far as we know. Prenatal genome editing isn’t the same as editing ex vivo embryos, like the Chinese scientist did, because prenatal editing involves editing the DNA of a fetus visible inside a pregnant person’s womb – without the intent to affect future descendants.
But the societal implications of this technology are still vast. And researchers can already start exploring the ethics by engaging communities well ahead of time.
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