Fetal genome editing is on the horizon – a medical anthropologist explains why ethical discussions with target communities should happen sooner, not later

With the primary goal of advancing scientific knowledge, most scientists are not trained or motivated to think about the social implications of the technologies they develop. Even in genomic medicine, which is aimed at benefiting future patients, time and money pressures make it tough Real-time ethics monitoring is difficult.

In 2015, three years after scientists discovered how to permanently edit the human genome, American scientists issued a statement to halt the operate of germline genome editing, a controversial type of gene editing in which changes to DNA are also passed on to the patient’s future biological descendants.
The scientists’ statement called for “an open discussion of the merits and risks” before the experiments began. But no such discussions took place.

As of 2018, at least two children have been born after undergoing germline editing. embryos that have been genetically modified in China.With no preemptive ethics or clear regulatory guidelines, every now and then a “cowboy scientist” comes along who pushes the boundaries of experimentation until he is told to stop.

After finding out about the children, the scientists continued talking – but mostly among themselves. Then in 2020 report of the international commission which gathered expert opinions, repeated the call for a public discussion on whether germline editing can be ethical.

I am medical anthropologist and bioethicist which explores the values ​​and experiences behind the development of prenatal gene therapy, including genome editing.

Prenatal human genome editing has not happened yet – as far as we know. Prenatal genome editing is not the same as prenatal genome editing. ex vivo embryosjust as the Chinese scientist did, because prenatal editing involves editing the DNA of the fetus apparent in the womb of a pregnant woman – with no intention of affecting future offspring.

But the social implications of this technology are still enormous. And scientists can start exploring the ethics now, engaging communities long before then.

Engaging the community

It is impossible to truly predict how technologies might benefit society without any input from the people in society. Potential users of technologies in particular may have their own experiences to offer. In 2022, a UK citizens’ jury of people affected by a genetic disease deliberated. They voted that germline editing of human embryos can be ethical – if a number of specific conditions can be met, such as transparency and equality of access.

Recently in the USA the National Council on Disability published present your concerns about embryo editing and prenatal editingTheir main concern was the possibility of increased discrimination against people with disabilities.

Some people believe that preventing the birth of people with certain genetic traits as a form of eugenicsthe disturbing practice of treating the genetic characteristics of a social group as undesirable and attempting to remove them from the human gene pool. However, genetic characteristics are often associated with a person’s social identity – treating certain characteristics as undesirable in the human gene pool can be deeply discriminatory.

Losing a child to a sedate genetic disorder is deeply devastating for families. But the same genes that cause disease can also create a person’s identity and community, according to the National Council on Disability described in its reportPeople with disabilities can enjoy a good quality of life if they are provided with appropriate social support.

It’s not effortless involve non-scientists in discussions about genetics. And people have different values, which means community deliberations 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 the technology creators take into account user concerns.

Not only about the fetus

Prenatal human genome editing, also known as fetal genome surgeryoffers the chance to address cellular disease processes early, perhaps even preventing symptoms from occurring. Delivering treatments can be more direct and effective than what is possible after birth. For example, gene therapy delivered to the fetal brain could reach the entire central nervous system.

But fetal editing necessarily involves the participation of a pregnant person.

In the 1980s scientists managed to perform surgery on a fetus for the first time. This established the fetus as a patient and direct recipient of health care.

Viewing the fetus as a separate patient oversimplifies the mother-fetus relationship. Historically, this approach has diminished interests of a pregnant person.

And since editing the genome of a fetus can harm the expectant mother or require an abortion, any discussion about prenatal genetic interventions is also becomes a discussion about access to abortionFetal gene editing is not just about editing that fetus and preventing genetic diseases.

Prenatal Genome Editing vs. Embryo Editing

Prenatal genome editing falls within the broader spectrum of human genome editing that extends from the germline, where the changes are heritable, to somatic cells, where the patient’s descendants will not inherit the changes. Prenatal genome editing is, in theory, somatic cell editing.

There is still a diminutive potential for accidental germline editing. “Editing” the genome can be a misleading metaphor. When gene editing was first developed, it was less like cutting and pasting genes and more like sending in a drone that can hit or miss its target – a piece of DNA. It can change the genome in intentional and sometimes unintentional ways. As technology advances, gene editing is becoming less like a drone and more like surgical incision.

Ultimately, scientists can’t know whether unintended, collateral germline edits will occur until decades in the future. That would require editing a significant number of fetal genomes, waiting for those fetuses to be born, and then waiting to analyze the genomes of their future descendants.

Unresolved Issues in Healthcare Equity

Another critical ethical question is who would have access to these technologies. To distribute prenatal genomic therapies equitably, technology developers and health systems would need to address both cost and trust issues.

Take for example: new methods of gene editing treatment for children with sickle cell disease. This disease mainly affects black families who still struggle with significant differences and barriers in access to both prenatal care and general health care.

Editing a fetus, rather than a child or adult, could potentially reduce healthcare costs. Because the fetus is smaller, doctors would operate fewer gene-editing materials at lower production costs. Furthermore, treating the disease early could reduce the costs a patient might face over their lifetime.

However, all genome editing procedures they are expensiveTreating a 12-year-old with sickle cell disease with gene editing currently costs $3.1 million. While some scientists want make gene editing more affordableThere hasn’t been much progress in sight yet.

There is also an issue of trust. I have heard of families from groups that are underrepresented in genomic research. who say they are hesitant to participate in prenatal diagnostic testing if they do not trust the healthcare team conducting the testing. This type of testing is a first step toward building treatment models, such as prenatal genome editing. What’s more, these underrepresented families tend to less trust throughout the healthcare system.

While prenatal gene editing holds enormous potential for scientific discovery, scientists and software developers could bring potential users—the people 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.