Addressing the legal concerns for the amendment to The Human Fertilisation and Embryology Act in the UK

In May 2024, The Human Fertilisation and Embryology Act was amended in the UK to enable HIV patients to donate their eggs and sperm to families, friends and other known recipients,1 which caused huge controversies around the world. It can be said that such a move on policy loosening by the UK’s regulators is a brave attempt to address persistent stigmas and promote reproductive rights as long as these patients have an undetectable viral load. Nonetheless, these legal provisions that stand in the way of implementing this policy require further analysis:

(Figure 1)First and foremost, there are still questions about the possible long-term health impacts even if the science of ‘Undetectable=Untransmittable’ (U=U) has broad support.2 There may be concerns over the potential effects on health, particularly for the children conceived as a result of these donations, as the disclosure of the donor’s HIV status in the family and the related HIV stigma may restrict the psychosocial development of the child.3 Also, informed consent and ongoing health counselling for all parties (donors, recipients and offspring) are still crucial to resolving any lingering fears or misconceptions,4 since long-term research focused on offspring generated by such donation is also unclear based on current evidence.

Moreover, the new idea of HIV-infected individuals being included as potential donors may raise the issue of compensating for damages in case of adverse effects or new risks emerging in the course of donation (eg, some donors may fail to take anti-HIV drugs regularly or viral load testing somehow goes wrong).5 While the risk of transmission is negligible, establishing clear guidelines in the amendment for liability, compensation and recourse mechanisms is always critical to protect both donors and recipients. Such legal frameworks must balance the promotion of reproductive rights for any person with the just resolution of any adverse outcomes, including regular viral load testing and informed consent protocols, to ensure that liability provisions do not deter individuals from accessing these services.

In addition, the UK’s radical reform in fertility law may result in legal loopholes for foreign couples pursuing ‘reproductive tourism’ by taking full advantage of the jurisdictional and policy disparities around the world.6 For example, Germany finds surrogacy a crime,7 and strict laws exist surrounding the general use of gametes by HIV-positive individuals. One example is that a German couple who are HIV positive (both sides or either side) can go to the UK to make a surrogacy using their own sperm or eggs, which is highly regulated in their own country. More legal disputes could arise out of this, particularly concerning the issues of children’s rights, which require parents to enter into a non-commercial surrogacy arrangement in accordance with the surrogacy law in the UK,8 and the difficulties surrounding the legal recognition of children may occur as a result of such arrangements. In order to decrease these potential risks, some cross-border mutual understanding and guidelines may be necessary to reduce such possible risks.

Lastly, there might come to be very great concerns about confidentiality owing to the very nature of the HIV records. The National Health Service Confidentiality Code of Practice imposes additional confidentiality obligations on healthcare practitioners.9 Such confidentiality extends to even all healthcare information including HIV that a patient discloses to a healthcare provider due to the faith vested in them in seeking medical assistance. For instance, disclosing a donor’s HIV status without proper consent would constitute a breach of this duty and may result in the offending party being sued for contravening confidentiality. Reasons for the larger public interest or the safety of other people such as persons from whom genetic material is donated may be considered necessary for disclosure,10 but such instances are circumscribed. In the case of W versus Egdell (1990) 1 All ER 835,11 it established the principle that healthcare professionals may disclose confidential medical information without consent where it is necessary to protect public safety. However, such disclosures must be justified and limited to the minimum information required.

In the following step, to ensure that donors’ and recipients’ confidentiality is well upheld throughout the donation process, the amendments must clearly define the legal protections relating to privacy issues. These measures must provide strict safeguards from any possible breaches while also allowing certain authorised individuals (such as the recipients) or groups to reasonably access and share core information as required. To be more detailed, the amendments should clarify the conditions under which information regarding a donor’s HIV status can be shared and the categories of individuals or institutions that may access such information. It also should be made clear that in which certain situations (maybe medical emergencies or threats to public health, etc), the amendments may necessitate the disclosure of a donor’s HIV status without their explicit consent. However, even in these extreme circumstances, the disclosure must be proportionate and limited to what is necessary.

In conclusion, the UK’s legislation to permit donations of gametes from HIV-positive individuals with an undetectable viral load is a commendable step towards the destigmatisation of HIV and the promotion of reproductive justice. Whereas a robust and transparent informed consent process and a completed legal liability and compensation mechanism are crucial to ensuring all parties—donors, recipients and offspring—understand the potential risks and implications of HIV-positive gamete donation. Also, detailed guidelines for cross-border reproductive tourism and privacy protection are essentially needed to promote reproductive autonomy for the sake of public trust, as well as the safety and health of all parties concerned.