The implications of the gender-based prohibitions relating to human germline genome editing in the Human Fertilisation and Embryology Act

Research question: What are the implications of the gender-based prohibitions relating to human germline genome editing (hGGE) in the Human Fertilisation and Embryology (HFE) Act 1990, as amended in 2008? Design: A three-phase primary research design consisting of a mixed-methods online public survey of 521 UK citizens aged 16–82 years, 13 semi-structured interviews with experts and professionals involved in the future of hGGE, and structured interviews with 21 people affected by genetic conditions. The research was conducted between March 2018 and October 2019. Results: Gender-based prohibitions in the HFE Act weaken its intent to prevent germline cells that have been altered from resulting in a pregnancy and the possible birth of people with edited genomes. This weakness could become increasingly problematic as genome editing technologies develop and social advances seek to eradicate gendered expectations and gendered binaries. Conclusion: The HFE Act should be amended to avoid gender-based discrimination and the potential gender-based prohibitions have to circumvent germline genome editing being used before the technology is considered safe enough to prevent disease.