The act, as amended in 2008, includes provisions and prohibitions which have been at the heart of the Progress Educational Trust (PET)'s activity since the charity was founded in 1992. PET has campaigned for and influenced changes to the HFE Act on a number of topical matters; these include amending legislation in the UK to permit mitochondrial donation for women with mitochondrial disease and removing the ten-year limit on social egg freezing (see Extend the Limit).
Due to a number of significant social and scientific advances, the HFE Act has become outdated and could benefit from further amendments.
PET embraces its mission to educate and debate the application of reproductive and genetic science with unique flair, and never shies away from addressing sensitive, controversial, and important matters relating to the future of human reproduction. In this vein, when my analysis of the HFE Act in relation to human germline genome editing (hGGE) revealed that the prohibitions to prevent a genetically edited child from being born in the UK are based on gender identities, I knew this would be of interest to PET.
The Human Fertilisation and Embryology Authority (HFEA) was established in 1990 under Section 5 of the HFE Act, and regulates fertility treatment and research involving human gametes and embryos outside of the human body. The HFEA is responsible for licensing, monitoring and inspecting fertility clinics and research centres to which they have granted treatment and/or research licences. Provisions relating to hGGE in the act are detailed in relation to these two categories of licences.
Provisions in the act state that all activities involving human embryos outside of the body are only legally permissible if the HFEA grants a respective licence for them. Currently, the act enables the HFEA to grant research licences that can include/involve hGGE. The HFEA has granted only one such licence to date; to Professor Kathy Niakan's team at the Francis Crick Institute in London.
Treatment licences encompass most activities involved in fertility treatment, including applications aimed at preventing the transmission of genetic disease. Mitochondrial donation and preimplantation genetic testing are examples of such applications. Treatment licences have several prohibitions; those which relate to hGGE are listed in relation to what can be placed inside a woman, and therefore have several implications.
The HFE Act defines women and men as respectively being a girl and a boy from birth – ie, cis people. This is problematic due to its inferred discrimination towards trans people. While legislation in the UK provides no alternate definitions of men or women, the Gender Recognition Act 2004 was designed to enable trans people to be legally recognised by their 'acquired gender' if they hold a Gender Recognition Certificate (GRC).
Thus, the wording in the HFE Act could not only be considered discriminatory but essentially means that the prohibitions do not apply to men or non-binary people (although non-binary people are currently not recognised within any legislation in the UK). This is significant because social and scientific advances mean that 'men' as defined by the HFE Act increasingly have possibilities to gestate and birth a child.
If a cis man was to receive a uterus transplant, there are no limitations in terms of what could be legally placed inside him. Additionally, if 'acquired genders' are claimed to be recognised in the HFE Act, then what can be placed inside a (trans)man who has his own uterus is also unregulated. Consultations with policy staff at the HFEA and the Department of Health and Social Care revealed that neither institution was able to clarify the implications that these gender-based prohibitions could have or how they relate to the GRCs. In this context, I decided to discuss the implications the gender-based prohibitions could have in an article in Reproductive Biomedicine Online.
Campaigning to amend the HFE Act to avoid such discrimination could feasibly be next on PET's list. Nonetheless, the mounting pressure such issues generate means that sooner or later the HFE Act will have to be amended to reflect the growing social and scientific advances, particularly those afforded by ARTs on a larger scale. I have no doubt that when the new Bill is drafted to address matters such as the gender-based prohibitions, the 14-day rule, and egg freezing, PET will be at the forefront of ensuring that nothing is overlooked.