The Nuffield Council on Bioethics, a UK-based independent charitable body located in London, has seen fit to grant a green light to the use of gene-editing technology to alter the characteristics of unborn children. The bioethics council stated that there was nothing objectionable about the use of DNA altering technology that enables parents to give their child certain characteristics, with a few major caveats. The council says that the DNA is only “morally permissible” if it doesn’t exacerbate already existing social inequalities.
The report released by the Nuffield Council on Bioethics, titled “Genome Editing and Human Reproduction: Social and Ethical Issues”, says only that the use of DNA editing technology could be “morally permissible” and urges a larger conversation on the issue along with much more research into the effectiveness and safety of the technology, as well as the potential social impact of the technology. The report does not call for any changes to current UK law that would make the altering of a child’s DNA legal, merely stating that the use of such technology is not inherently immoral. Currently, any modified embryo has to be destroyed by the time the embryo is two weeks of age, and similar restrictions are found in the US.
The NCB has long been recognized as a very forward-thinking ethics board, and quicker to approve potentially controversial treatments than other ethics boards. The council approved a controversial treatment for fertility intended to eliminate harmful mitochondrial diseases back in 2016. In keeping with their forward-thinking reputation, the recent NCB report gives a cautious endorsement of a technology that doesn’t currently exist, though likely will in the future. The NCB not only concludes that the use of DNA editing technology to eliminate heritable diseases isn’t unethical, it also didn’t rule against cosmetic (non-therapeutic) uses of the technology, providing that the modifications are in the best interest of the child and that the given characteristics don’t risk enhancing division in society, disadvantage, or discrimination.
Karen Yeung, the chair of the NCB, makes the decision clear, with the explanation that there’s no reason to rule out the use of genome editing in principle, only certain uses of genome editing. Yeung goes on to explain that the first uses of genome editing technology will likely be used to eliminate the risk of certain diseases and genetic disorders. However, in time the technology will become more sophisticated and likely become available for use to parents who want to achieve a wider range of goals.
Safety And Ethical Applications
The NCB report makes direct reference to germline modifications. Germline modifications are those that can alter the characteristics displayed in future generations. Germline modifications are distinct from somatic gene therapies, which are administered to an organism after birth. The germline modifications are given to a parent, but they can be passed down to offspring. The alterations are permanent, so it’s very important that genetic engineers get the alterations correct.
One of the reasons that editing of the human genome and embryos is so controversial is that the procedures used to edit genomes haven’t yet been proven to be safe for use in humans. Some recent studies suggest that the CRISPR gene editing system may not be as safe and exact and it was first thought to be. The worry is that editing of the genome could end up disrupting healthy genes and not merely inhibiting faulty ones. Another worry is that since the changes to the genome would be permanent, any unintended effects of the editing would be passed down to every future generation.
However, despite these current practical impediments to genetic engineering, the technology is likely to improve and the problems with it solved or reduced. This is part of the reason the NCB wants to begin discussing the issue now and is urging more research into ethical use of the technology. The NCB wants to help make sure the technology is used ethically, maximizing the benefits while minimizing the harms.
Jackie Leach Scully, co-author on the report as well as bioethics and social ethics professor at Newcastle University, acknowledges the dual nature of the technology. Leach Scully says that the use of heritable genome editing will likely become a path for parents who wish to “try and secure what they think is the best start in life” for their offspring. Yet Leach scully also acknowledges how the use of genetic engineering could also increase inequality or discrimination, even as it makes children healthier. For instance, the number of people who have genetic disorders could be greatly reduced, but it might leave those who do have diseases feeling even more maligned and with even less medical resources.
A Call For Dialogue
In order to help balance the risks and harms of human genetic modification, the NCB has petitioned the government to create a multidisciplinary body that will facilitate discussions on the issue and ensure that many different voices and viewpoints are included in the conversation about what should be permitted and what shouldn’t be permitted. The NCB also recommends that if the law is someday changed, there should be a fertility regulator whose job is to consider the editing of an embryo’s genome on a case by case basis. Yeung explains the goal:
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.
As for how to prevent the abuse of genetic editing, geneticist at Harvard University George Church (not involved in the study) says that lower costs along with better education and public dialogue are key to keeping the technology fair and preventing exacerbated discrimination.
Despite the caution that the NCB has approached their decision with, the report was still controversial and has attracted criticism from those who believe that the NCB merely opened the door wider to an era of inequality between genetic haves and have-nots. Perhaps they can take some comfort in the fact that what the NCB has urged above all else is dialogue and research.