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.
Engaging communities
You can’t really anticipate how technologies might benefit society without any input from people in society. Prospective users of the technology in particular might have their own experiences to offer. In 2022 in the U.K., a citizens’ jury composed of people affected by genetic disease deliberated. They voted that germline editing of human embryos could be ethical – if a series of specific conditions could be met, such as transparency and equality of access.
Recently in the U.S., the National Council on Disability published a report on their concerns about embryo and prenatal editing. Their key concern was about the potential for more discrimination against people with disabilities.
Some people see preventing the birth of people with certain genetic traits as a form of eugenics, the troubling practice of treating a social group’s genetic traits as unwanted and attempting to remove them from the human gene pool. But…
