In September 2016 the Council began an inquiry into ethical issues raised by genome editing as an emerging biomedical technology that could influence inherited characteristics in human beings. We will publish a report making recommendations for policy and practice in summer 2018.
The potential development of genome editing applications in human reproduction was one of the areas identified as requiring urgent ethical scrutiny in our 2016 report Genome editing: an ethical review.
Background on genome editing and human reproduction
Human reproductive applications are probably the most talked about potential application of genome editing technologies and raise some of the most complex ethical concerns. Concerns have been stirred by reports of research in China to correct disease-causing genetic mutations in non-viable embryos in 2015 and the granting, by the Human Fertilisation and Embryology Authority (HFEA), of a licence to allow genome editing of embryos in the UK February 2016.
There are more than 4,000 known, inherited, single gene conditions, which collectively are thought to affect approximately 1% of births worldwide. Genome editing could one day offer an alternative approach to preventing the inheritance of diseases such as cystic fibrosis. It might be an option where established methods such as pre-implantation genetic diagnosis (PGD), which involves screening the DNA of embryos created through IVF, would not be effective at preventing transmission.
Many people have concerns about the possible use of genome editing in humans, for example, about the risks of unintended effects due to off target DNA alterations, and the implications of making irreversible changes that will be passed on to future generations. Another key concern is the possible orientation of research towards human enhancement, going beyond disease prevention into the engineering of ‘desirable’ genetic characteristics. As with other technologies and innovations, the potential benefits and harms of genome editing might not be distributed equitably, and some people are worried that negative effects could cause discrimination, injustice or disadvantage to certain individuals or groups.