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 . In 2015, three years after scientists discovered how to permanently edit the human genome, U.
S. scientists 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 with . 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, . Then in 2020, an that brought together expert views resounded the same call for societal discussions about whether germline editing could be ethical. I'm a who studies the values and experiences driving prenatal 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 , 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 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 . Their key concern was about the potential for more discrimination against people with disabilities. Some people see preventing the birth of people with certain , 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 , people with disabilities can have a good quality of life when given enough social support. It's not easy to in discussions about genetics. And people have diverse values, which means 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 , 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 . But editing a fetus necessarily involves the pregnant person. In the 1980s, for the first time.
This established the fetus as a patient and direct recipient of health care. Seeing the fetus as a separate patient oversimplifies the maternal-fetal relationship. Doing so has historically downgraded .
And since editing the fetal genome could harm the expectant parent or require an abortion, any discussion about prenatal genetic interventions also . Editing the genes of a fetus isn't only about editing that fetus and preventing genetic disease. Prenatal genome editing versus editing embryos Prenatal genome editing sits within the broader spectrum of human genome editing, which ranges from germline, where the changes are heritable, to somatic cell, where the patient's descendants won't inherit the changes.
Prenatal genome editing is, in theory, somatic cell editing. There's still a small potential for accidental germline editing. "Editing" a genome can be a misleading metaphor.
When first developed, gene editing was less like cutting and pasting genes and more like sending —a piece of DNA. It may change the genome in intended and sometimes unintended ways. As the technology advances, gene editing is becoming less like a drone and more like a surgeon's cut.
Ultimately, researchers can't know whether there would be unintentional, collateral germline edits until decades into the future. It would require editing a significant number of fetuses' genomes, waiting for these fetuses to be born, and then waiting to analyze the genomes of their future descendants. Unresolved health equity issues Another major ethical question has to do with who would get access to these technologies.
To distribute prenatal genome therapies equitably, technology developers and health care systems would need to address both cost and trust issues. Take, for example, for children with sickle cell disease. This disease mostly affects Black families, who continue to face in access to both prenatal care and general health care.
Editing the fetus instead of a child or adult could potentially reduce health care costs. Since a fetus is smaller, practitioners would use fewer gene-editing materials with lower manufacturing costs. More than that, treating the disease early could reduce costs that the patient might accrue over a lifetime.
Nonetheless, all genome editing procedures . Treating a 12-year-old with sickle cell disease with gene editing . While some academics want to , there hasn't been much progress yet.
There's also the issue of trust. that say they're hesitant to participate in prenatal diagnostic research if they don't trust the health care team doing the research. This type of research is the first step to building models for treatments such as prenatal .
Moreover, these underrepresented families tend to have in the health care system at large. Although prenatal gene editing holds immense potential for , scientists and developers could invite the prospective users—the people who stand to gain or lose the most from this technology—to the decision-making table for the clearest picture of how these technologies could affect society. This article is republished from under a Creative Commons license.
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