Gene editing of human embryos that will be used for pregnancy should be permitted for medical purposes, says the US National Academy of Medicine and National Academy of Sciences
In their much anticipated report, the National Academies recommend that once techniques, such as the high profile CRISPR gene editing system, are sufficiently advanced, and a suitably stringent regulatory framework is in place, modifications to the germline – ie heritable changes - should be permitted, though only for the prevention or treatment of serious disease or disability. While they emphasise that that time is not here yet, the recommendation aims to prepare for the inevitable as the race to get these technologies on stream speeds up.
As we noted back in January 2016, the accessibility of the technology has removed barriers to its widespread use, including in countries with poor regulatory infrastructure, putting patients at risk. We argued that calls for moratoria on gene editing techniques would be impossible to implement universally, and called for proportionate regulation that fosters research and self-regulation.
The prevailing view in the UK, according to the Nuffield Council on Bioethics, is that modification of the human germline in reproductive technologies is morally and ethically challenging to justify. However, they urged for earnest and immediate discussion on the controversial subject.
The report from the National Academies recommends restricting the technique to severe medical conditions in the absence of reasonable alternatives – alternatives could include pre-emptive options such as pre-implantation genetic diagnosis (PGD) or gamete donation. Other recommendations, including robust oversight framework, public input into decisions and long-term follow-up of children who have edited genomes and their offspring, are set out in a briefing from the report. They do not support even the theoretical use of gene editing for what is termed human ‘enhancement’ – modification for non-medical purposes.