Most scientists whose primary goal is to advance scientific knowledge are not trained or incentivized to consider the societal impacts of the technologies they develop. Even in genomic medicine, which is geared toward benefiting future patients, time and funding pressures make real-time ethical review difficult.
In 2015, three years after scientists discovered how to permanently edit the human genome, U.S. scientists issued a statement calling for a halt to germline genome editing, a controversial type of gene editing in which DNA changes are passed on to a patient’s future biological descendants.
The scientists’ statement called for “open discussion of values and risks” before experiments began. But those discussions did not happen.
By 2018, at least two babies had been born in China as a result of germline editing with genetically modified embryos. Without any preemptive ethics or clear regulatory guidance, you’ll find the occasional “cowboy scientist” who pushes the boundaries of experimentation and keeps experimenting until they’re told to stop.
Once they had the information on the babies, scientists kept talking — but mostly among themselves. Then in 2020, an international commission of expert opinion issued a report calling for the same public debate about whether germline editing could be ethical.
I am a medical anthropologist and bioethicist who studies the values and experiences that drive prenatal gene therapy developments, including genome editing.
Human prenatal genome editing has not yet occurred—as far as we know. Prenatal genome editing is not the same as ex vivo embryo editing, as the Chinese scientist did, because prenatal editing involves editing the DNA of a fetus that can be seen inside a pregnant person’s womb, with no intention of affecting future descendants.
But the societal implications of this technology are still huge, and researchers can begin exploring ethics by engaging with communities well in advance.
Involving communities
You can’t really predict how technologies might benefit society without input from people in society. Potential users of the technology, in particular, may have their own experiences to offer. In 2022, a citizen jury of people affected by genetic disease deliberated in the UK. They voted that germline editing of human embryos could be ethical – provided a set of specific conditions, such as transparency and equality of access, could be met.
In the US, the National Council on Disability recently published a report expressing concerns about embryo and prenatal editing. Their main concern was the potential for greater discrimination against people with disabilities.
Some people view preventing the birth of people with certain genetic traits as a form of eugenics, the problematic practice of treating genetic traits of a social group as undesirable and attempting to remove them from the human gene pool. However, genetic traits are often associated with a person’s social identity; treating certain traits as undesirable in the human gene pool can be highly discriminatory.
Losing a baby to a serious genetic disease can be deeply heartbreaking for families. But the same genes that cause the disease can also create human identity and community. As the National Council on Disability reports, people with disabilities can have a good quality of life when they have adequate social support.
It’s not easy to engage non-scientists in discussions about genetics. And people have different values, which means that community discussions that work in one context may not work in another. But from what I’ve seen, scientific advances are more likely to benefit potential users when technology developers take users’ concerns into account.
It’s not just about the fetus
Prenatal human genome editing, also known as fetal genome surgery, offers the chance to address cellular disease processes early and even prevent symptoms from appearing. The delivery of treatment can be more direct and effective than is possible after birth. For example, gene therapy delivered to the fetal brain can reach the entire central nervous system.
But editing a fetus necessarily involves the pregnant person.
In the 1980s, scientists were able to perform surgery on a fetus for the first time, identifying the fetus as a patient and a direct recipient of healthcare.
Viewing the fetus as a separate patient oversimplifies the mother-fetus relationship. Doing so has historically underestimated the interests of the pregnant person.
And because editing the fetal genome can harm the expectant mother or necessitate an abortion, any discussion about prenatal genetic interventions also becomes a discussion about abortion access. Editing a fetus’ genes isn’t just about editing that fetus and preventing genetic diseases.
The difference between prenatal genome editing and embryo editing
Prenatal genome editing falls within the broader spectrum of human genome editing, extending from the germline, where changes are heritable, to the somatic cell, where the patient’s descendants will not inherit the changes. Prenatal genome editing is, in theory, somatic cell editing.
There is still a small potential for accidental germline editing. “Editing” a genome can be a misleading metaphor. When it was first developed, gene editing was less like cutting and pasting genes than it was about sending a drone that could hit or miss its target—a piece of DNA. It can change the genome in deliberate and sometimes unintentional ways. As technology advances, gene editing is becoming less like a drone and more like a surgeon’s incision.
As a result, researchers won’t know for decades whether unintentional, lateral germline edits will occur. That would require editing the genomes of a significant number of fetuses, waiting for those fetuses to be born, and then analyzing the genomes of their future descendants.
Unresolved health equity issues
Another important ethical question concerns who will have access to these technologies. To equitably distribute prenatal genomic therapies, technology developers and health care systems will need to address both cost and trust issues.
Take, for example, new gene editing therapies for children with sickle cell disease, a disease that predominantly affects Black families, who continue to face significant disparities and barriers to accessing both prenatal care and overall health care.
Editing a fetus instead of a child or adult could potentially reduce healthcare costs. Because a fetus is smaller, practitioners use less gene-editing material, with lower manufacturing costs. What’s more, treating the disease early could reduce costs that a patient might accumulate over their lifetime.
However, all genome editing procedures are expensive. It currently costs $3.1 million to treat a 12-year-old child with sickle cell disease with gene editing. While some academics want to make gene editing more affordable, not much progress has been made yet.
There’s also the issue of trust. I’ve heard from families in groups that are underrepresented in genomic research that they are reluctant to participate in prenatal diagnostic research if they don’t trust the healthcare team conducting the research. Such research is the first step toward building models for treatments like prenatal genome editing. What’s more, these underrepresented families tend to have less trust in the healthcare system overall.
While prenatal gene editing has enormous potential for scientific discovery, scientists and developers can invite the potential users who stand to gain or lose the most from this technology to the decision-making table to get the clearest picture of how these technologies could impact society.
This article is republished from The Conversation, a nonprofit, independent news organization that delivers facts and analysis to help you understand our complex world.
Written by Julia Brown, University of California, San Francisco.
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Julia Brown receives funding from the National Human Genome Research Institute.