Consent, Embryos and Assisted Reproduction: Why Informed Consent Matters

Recent media coverage[1] of two families facing the destruction of stored embryos following the withdrawal of sperm donor consent has reignited an important legal and ethical debate within assisted reproduction; when should consent become irrevocable, and how should clinics ensure patients genuinely understand the implications of consent law before treatment begins?

The cases reported by the BBC involve couples who had successfully created embryos using donor sperm, subsequently had children through fertility treatment  and intended to use their remaining embryos to expand their families. They later discovered that the donor had withdrawn consent for future use of those embryos.

The Human Fertilisation and Embryology Authority (HFEA) has consistently maintained that individuals who provide sperm or eggs retain autonomy over the future use of their genetic material. According to the current legal framework[2], donors may withdraw consent at any point before embryo transfer. Once an embryo has been transferred into the uterus, consent can no longer be withdrawn.

The rationale is understandable a reproductive autonomy is a fundamental personal right. The law seeks to ensure that nobody becomes a genetic parent against their wishes.

However, the recent cases demonstrate the significant tension that can arise when one person’s autonomy conflicts with another person’s family plans. Families may invest years of emotional commitment, undergo invasive medical procedures, incur substantial financial costs and form reasonable expectations about future children, only to discover that those expectations can be extinguished by a donor’s later change of mind.

Consent must be “Informed”.

We feel that the debate should not focus solely on whether donors should retain the right to withdraw consent since an equally important question relates to whether intended parents fully understand the meaning of that right at the outset.

In the reported cases, the affected couples acknowledged signing consent documentation but stated that they did not fully appreciate that a donor could subsequently withdraw consent after embryos had already been created and frozen.

Consent obtained through extensive written documentation may satisfy regulatory requirements, but genuine informed consent requires more than a signature, it requires understanding.  This is an issue we are familiar with in DNA testing for human relationships, where we take care to make sure that our clients “understand the nature and possible consequences of the DNA test”.

Indeed, a person who signs a multi-page consent form but does not appreciate one of its most significant consequences may, at some later point,  feel that they were inadequately informed, even where the service provider has complied with all regulatory obligations.

In this scenario, it is often assumed that once embryos have been created, they effectively become the donors  embryos for future use. In fact, the law is a great deal more nuanced and consideration should be given where; a) donor consent can be withdrawn, b) embryos may need to be discarded (and under what circumstances), c) the agreed storage period for  embryos, d) what happens if a donor becomes uncontactable and e) whether future treatment cycles for siblings are be affected by issues of informed consent.

Is reform of the Law Required?

The affected families interviewed by the BBC have called for a change in the law so that donor consent cannot be withdrawn once embryos have been created.

Supporters of law reform argue that embryo creation represents a significant medical, emotional and financial commitment. Once embryos exist, intended parents may reasonably see them as future siblings and may organise their entire family planning around them.

Opponents of law reform are likely to argue that individuals should never lose control of their reproductive autonomy merely because genetic material was used to create embryos.

Neither position is straightforward.

The challenge for policymakers is balancing two legitimate interests:

1. The donor’s right not to become a parent against their wishes.
2. The intended parents’ reliance upon embryos created through substantial investment and expectation.

The current law favours donor autonomy. Whether that balance remains appropriate is ultimately (and correctly) a matter for Parliament rather than the fertility regulator.

---

[1] Wrexham couple spent £23,000 on fertility treatment but now embryos will be destroyed – BBC News

[2] Under Schedule 3 of the Human Fertilisation and Embryology Act 1990 (as amended), consent for the use of gametes and embryos may be varied or withdrawn before treatment use occurs.