With their primary goal of advancing scientific knowledge, most scientists are not trained or motivated to consider the societal implications of the technologies they develop. Even in genomic medicine, which aims to benefit future patients, time and funding constraints make real-time ethical oversight 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 the use of germline genome editing, a controversial form of gene editing in which the DNA changes are also passed on to the patient’s future biological offspring.
The scientists’ statement called for “open discussion of the benefits and risks” before experiments could begin. But these discussions did not take place.
In 2018, at least two babies were born from germline editing using genetically modified embryos in China. Without preventive ethics or clear regulations, you occasionally get a “cowboy scientist” who pushes the boundaries of experiments until they’re told to stop.
After hearing about the babies, scientists kept talking, but mostly among themselves. In 2020, a report from an international committee that brought together expert opinions echoed the same call for public debate on whether germline editing could be ethical.
I am a medical anthropologist and bioethicist studying the values and experiences underlying developments in prenatal gene therapy, including genome editing.
Human prenatal genome editing has not yet happened – as far as we know. Prenatal genome editing is not the same as editing ex vivo embryos, as the Chinese scientist did, because prenatal editing involves editing the DNA of a fetus that is visible in the womb of a pregnant person – without the intention of affecting future offspring.
But the societal implications of this technology are still enormous. And researchers can start exploring the ethics by involving communities well in advance.
Communities involved
You can’t really predict how technologies might benefit society without some input from people in society. In particular, potential users of the technology may have their own experiences to offer. In 2022, a citizens’ jury in the UK, made up of people affected by genetic diseases, deliberated and voted that germline editing of human embryos could be ethical – if a series of specific conditions could be met, such as transparency and equal access.
Recently, the National Council on Disability in the US published a report on their concerns about embryo and prenatal editing. Their main concern was the potential for increased discrimination against people with disabilities.
Some people view preventing the birth of people with certain genetic traits as a form of eugenics, the disturbing practice of treating the genetic traits of a social group as undesirable and attempting to eliminate them from the human gene pool. But 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 causes great suffering for families. But the same genes that cause disease can also create human identity and community. As the National Council on Disability explained in its report, people with disabilities can have a good quality of life if they have adequate social support.
It’s not easy to engage non-scientists in discussions about genetics. And people have different values, meaning that community considerations that work in one context may not work in another. But from what I’ve seen, scientific developments are more likely to benefit potential users if the developers of the technology take the concerns of users into account.
Not just about the fetus
Prenatal human genome editing, also known as fetal genome surgery, offers a chance to target cellular disease processes early, and perhaps even prevent 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 to the fetus’s brain could reach the entire central nervous system.
But when editing a fetus, the pregnant person is always involved.
In the 1980s, scientists succeeded for the first time in operating on a fetus, turning the fetus into a patient and direct recipient of health care.
By viewing the fetus as a separate patient, the mother-fetus relationship is oversimplified. This has historically degraded the interests of the pregnant person.
And since editing the fetal genome can harm the expectant parent or require an abortion, any discussion of prenatal genetic interventions also becomes a discussion of abortion access. Editing the genes of a fetus is not just about editing that fetus and preventing genetic diseases.
Prenatal genome editing versus embryo editing
Prenatal genome editing falls within the broader spectrum of human genome editing, which ranges from germline, where the changes are heritable, to somatic cell, where the patient’s offspring do not inherit the changes. Prenatal genome editing is, in theory, somatic cell editing.
There is still a small chance of unintended germline editing. “Editing” a genome can be a misleading metaphor. When gene editing was first developed, it was less like cutting and pasting genes and more like sending out a drone that could hit or miss its target: a piece of DNA. It could alter the genome in intended and sometimes unintended ways. As the technology advances, gene editing looks less like a drone and more like a surgeon’s incision.
Ultimately, researchers won’t know for decades whether unintended, collateral germline editing will occur. This would require editing a significant number of fetuses, waiting for those fetuses to be born, and then waiting to analyze the genomes of their future offspring.
Unresolved issues related to health equity
Another important ethical question has to do with who would have access to these technologies. To distribute prenatal genome therapies fairly, technology developers and health systems would need to address both cost and trust issues.
Take, for example, new gene-editing treatments for children with sickle cell disease. This disease primarily affects Black families, who continue to face significant disparities and barriers 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. Because a fetus is smaller, doctors would use less gene editing materials with lower production costs. In addition, treating the disease early could reduce the costs the patient might incur over the course of their life.
However, all genome editing procedures are expensive. Treating a 12-year-old with sickle cell disease with gene editing currently costs US$3.1 million. Although some academics want to make gene editing more affordable, not much progress has been made.
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 testing if they don’t trust the health care team conducting the testing. This type of research is the first step toward building models for treatments like prenatal genome editing. In addition, these underrepresented families tend to have less trust in the health care system as a whole.
While prenatal gene editing offers enormous potential for scientific discovery, scientists and developers could invite potential users – the people with the most to gain or lose from this technology – to the decision-making table to get the clearest possible picture of how these technologies could impact society.
This article is republished from The Conversation, an independent nonprofit organization that brings you facts and analysis to help you understand our complex world.
It is written by: Julia Brown, University of California, San Francisco.
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Julia Brown receives funding from the National Human Genome Research Institute.