The UK’s Nuffield Council on Bioethics says it’s acceptable to genetically engineer human embryos, so long as the interventions aren’t harmful to the future child or society as a whole. The council is taking a surprisingly progressive position on the matter, but we’re still a long way off from the birth of the world’s first designer baby.
The Nuffield Council on Bioethics is one of the most forward-thinking ethics boards in the world. Six years ago, the council approved a controversial fertility treatment requiring three genetic parents, an intervention designed to eliminate debilitating mitochondrial diseases. The council’s approval prompted a change to UK law, and the first British babies born to the procedure are expected later this year. Now the Nuffield Council, after conducting an independent inquiry, has approved yet another controversial fertility treatment, albeit one that doesn’t exist yet. At least not for humans.
In its new report, “Genome Editing and Human Reproduction: Social and Ethical Issues,” the Nuffield Council has concluded that it is “morally permissible” to edit the DNA of a human embryo, sperm, or egg to alter a future person’s characteristics, such as eliminating heritable diseases. Importantly, however, the council did not rule out non-therapeutic applications, such as cosmetic tweaks and enhancements, so long as the interventions are in the best interests of the future baby and the new characteristics don’t “increase disadvantage, discrimination, or division in society,” in the words of the researchers. Now that the council has given its approval, it expects a “broad and inclusive societal debate” before any move is made to alter UK legislation.
“There is potential for heritable genome editing interventions to be used at some point in the future in assisted human reproduction, as a means for people to secure certain characteristics in their children,” said Karen Yeung, the chair of the Nuffield Council working party, in a statement. “Initially, this might involve preventing the inheritance of a specific genetic disorder. However, if the technology develops it has potential to become an alternative strategy available to parents for achieving a wider range of goals.”
The Nuffield Council’s report specifically addressed germline modifications, which have the potential to influence the characteristics of future generations. Unlike somatic gene therapies (which are administered after birth), the traits endowed by germline interventions are permanent, and they can be passed down to offspring, so it’s important that scientists get this right.
Back in 2015, scientists in China became the first to genetically modify a human embryo, but the embryo was destroyed shortly after the experiment. Scientists in the United States edited a human embryo for the first time in July 2017. To date, no genetically modified human has been born, as the procedure has yet to be proven safe. Recently, for example, scientists reported that the CRISPR gene editing tool may not be as precise and safe as previously thought. As it stands, all genetically modified embryos in the UK must be destroyed once they’re two weeks old. Similar laws exist in the United States. Realistically, it could be another 10 to 20 years before we see the first genetically modified human baby.
But that monumental day is coming. At first, genome editing will be used to eliminate hereditary diseases, such as sickle cell anemia, cystic fibrosis, and hemochromatosis (excessive iron in the blood), and to eliminate predispositions to diseases like cancer, heart disease, behavioural disorders, and dementia. Eventually, genome editing will be used to treat less serious conditions, such as male pattern baldness, or to select a child’s hair and eye colour. More radically, germline interventions could be used for enhancement purposes and the introduction of super-human characteristics, such as greater memory and intelligence, super-robust immune systems (e.g. a built-in immunity to AIDS or bacterial superbugs), and greater physical strength. In theory, genomic editing could also be used to introduce new characteristics altogether, such as an increased dynamic acoustic range, an ability to see infrared and ultraviolet light, and the ability to hold breath underwater for extended periods.
“[We] have concluded that the potential use of genome editing to influence the characteristics of future generations is not unacceptable in itself.”
The Nuffield Council on Bioethics did not explicitly address some of these more futuristic scenarios, but the language in report did not preclude these possibilities. To be deemed ethical, the council said heritable genome editing interventions must adhere to two overarching principles: They “must be intended to secure, and be consistent with, the welfare of the future person,” and “they should not increase disadvantage, discrimination or division in society,” write the authors of the report.
The council also made a batch of recommendations: Genome tweaks should be licensed on a case-by-case basis; more research is needed to establish standards of clinical safety; long-term studies should assess potential risks to individuals, groups, and society as as whole; and so on. The council also wants to see the establishment of an independent UK body to promote public debate on the matter, and to monitor social, cultural, legal, and health impacts. The UK should also work with international organisations, such as UNESCO and the Council of Europe, to establish a framework for international governance on these treatments.
“Whilst there is still uncertainty over the sorts of things genome editing might be able to achieve, or how widely its use might spread, we have concluded that the potential use of genome editing to influence the characteristics of future generations is not unacceptable in itself. However, the possibilities it raises could have significant impacts on individuals, families and on society,” said Yeung. “It is important that governments and public authorities step up and address these possibilities before people start asking to use this technology. Therefore, we urge the government to invest in supporting and encouraging broad and inclusive public debate, and put in place the governance measures that we need to ensure this promising technology is not used against the public interest.”
Today’s report is good for the United Kingdom, but it’s also good for the world. In addition to normalising the conversation around gene modification, the Nuffield Council on Bioethics is providing a sensible and responsible roadmap for moving forward. It’s still early days, but this is a great start. [Nuffield Council on Bioethics]