While the primary focus of scientists is to advance knowledge, most are neither trained nor incentivized to consider the broader societal implications of the technologies they develop.
Even in fields like genomic medicine, which aims to benefit future patients, time and funding constraints often make real-time ethical oversight challenging.
In 2015, three years after the discovery of how to permanently edit the human genome, U.S. scientists issued a statement urging a moratorium on germline genome editing—a highly controversial technique where DNA changes are passed down to future generations. They called for "open discussion of the merits and risks" before proceeding with experiments. However, these crucial conversations largely failed to materialize.
By 2018, at least two babies had been born from germline-edited embryos in China. The lack of proactive ethical guidelines and clear regulatory frameworks has led to instances of "rogue scientists" pushing the boundaries until they are explicitly stopped.
When news of these births broke, scientists continued to discuss the implications—but mainly within their own circles. In 2020 ,an international commission echoed the need for societal dialogue on whether germline editing could be ethically justified.
As a medical anthropologist and bioethicist, I study the values and experiences driving the development of prenatal gene therapies, including genome editing.
To date, human prenatal genome editing has not occurred—at least, not to our knowledge. Prenatal editing differs from editing ex vivo embryos, as it involves altering the DNA of a fetus within a pregnant person's womb, without the intention of affecting future generations.
Yet, the societal implications of this technology are profound, and researchers can begin to explore the ethics by engaging communities well in advance.
Engaging Communities
It's impossible to predict how new technologies might benefit society without input from the very people they will impact. Prospective users, in particular, can provide invaluable insights based on their lived experiences. For example, in 2022, a citizens' jury in the U.K., composed of individuals affected by genetic diseases, deliberated and ultimately voted that germline editing of human embryos could be ethical—provided certain conditions, such as transparency and equal access, were met.
In the U.S., the National Council on Disability recently published a report highlighting concerns about embryo and prenatal editing, particularly the potential for increased discrimination against people with disabilities.
Some argue that preventing the birth of individuals with certain genetic traits borders on eugenics—the troubling practice of deeming certain genetic traits undesirable and attempting to eliminate them from the gene pool. Since genetic traits are often linked to social identity, treating them as undesirable can be deeply discriminatory.
While losing a child to a severe genetic disease is a profound tragedy for families, the same genes that cause disease can also contribute to human identity and community. As the National Council on Disability noted in its report, people with disabilities can enjoy a good quality of life when provided with adequate social support.
Engaging non-scientists in discussions about genetics is challenging, especially given the diversity of values across communities. What works in one context may not be effective in another. However, scientific advancements are more likely to benefit potential users when developers consider their concerns.
Beyond the Fetus
Prenatal genome editing, also known as fetal genome surgery, offers the potential to address cellular disease processes early, potentially preventing symptoms from ever manifesting. Delivering treatment at this stage could be more direct and efficient than post-birth interventions. For instance, gene therapy delivered to a fetal brain could potentially reach the entire central nervous system.
However, editing a fetus inherently involves the pregnant person.
In the 1980s, when scientists first performed surgery on a fetus, the fetus was established as a patient and direct recipient of healthcare. But viewing the fetus as a separate patient oversimplifies the complex maternal-fetal relationship and has historically led to the interests of the pregnant person being overlooked.
Since fetal genome editing could pose risks to the pregnant person or necessitate an abortion, any discussion of prenatal genetic interventions also becomes a discussion about abortion access. Editing a fetus’s genes isn’t just about altering the fetus—it also raises questions about the rights and well-being of the pregnant person.
Prenatal Genome Editing vs. Embryo Editing
Prenatal genome editing falls within the broader spectrum of human genome editing, ranging from germline editing, where changes are heritable, to somatic cell editing, where the patient's descendants won’t inherit the modifications. In theory, prenatal genome editing is a form of somatic cell editing.
However, there's a small risk of accidental germline editing. The term "editing" can be misleading. In its early stages, gene editing was less like a precise cut-and-paste operation and more like sending a drone to hit—or miss—a target. As the technology improves, it is becoming more akin to a surgeon's scalpel.
Ultimately, researchers won’t know if there are unintended germline edits until decades later. This would require editing the genomes of a significant number of fetuses, monitoring their development, and eventually analyzing the genomes of their descendants.
Unresolved Health Equity Issues
Another major ethical concern is access to these technologies. For prenatal genome therapies to be distributed equitably, developers and healthcare systems must address issues of cost and trust.
Consider the example of new gene-editing treatments for children with sickle cell disease. This disease predominantly affects Black families, who often face significant disparities in access to both prenatal and general healthcare.
Editing a fetus, rather than a child or adult, could potentially reduce healthcare costs. A fetus is smaller, so less gene-editing material would be required, lowering manufacturing costs. Additionally, early intervention could reduce the lifetime costs of managing the disease.
However, all genome editing procedures are currently expensive. For example, treating a 12-year-old with sickle cell disease using gene editing costs around $3.1 million. While some researchers aim to make gene editing more affordable, progress has been slow.
There's also the issue of trust. Families from underrepresented groups in genomics research often express hesitancy to participate in prenatal diagnostic research if they don’t trust the healthcare team involved. This type of research is crucial for developing treatments like prenatal genome editing. Moreover, these families tend to have less trust in the healthcare system overall.
Although prenatal gene editing holds immense potential for scientific discovery, the clearest understanding of its societal impact can only be achieved by including prospective users—those who stand to gain or lose the most—in the decision-making process.
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