Editing fetal genomes is on the horizon − a medical anthropologist explains why ethical discussions with the target communities should happen sooner rather than later
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.
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.
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 genetic traits are often associated with a person’s social identity – treating certain traits as unwanted in the human gene pool can be deeply discriminatory.
Losing a baby to severe genetic disease leads to profound suffering for families. But the same genes that cause disease may also create human identity and community. As the National Council on Disability outlined in its report, people with disabilities can have a good quality of life when given enough social support.
It’s not easy to engage nonscientists in discussions about genetics. And people have diverse values, which means community deliberations that work in one context might not work in another. But from what I’ve seen, scientific developments are more likely to benefit prospective users when the developers of the technology consider the users’ concerns.
Not just about the fetus
Prenatal human genome editing, also known as fetal genome surgery, offers a chance to address cellular disease processes early, perhaps even preventing symptoms from ever appearing. The delivery of treatment could be more direct and efficient than what is possible after birth. For example, gene therapy delivered into the fetal brain could reach the whole central nervous system.
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.
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