European AMP scandal linked to a donor carrying a cancer-causing gene: how far can we control gametes without lapsing into eugenics?

In 2023, the Federal Agency for Medicines and Health Products (FAMHP) in Belgium was alerted to the fact that a Danish donor carrying a carcinogenic gene had enabled the birth of at least 67 children by in vitro fertilisation (IVF) in Europe. To date, 10 cases of cancer have been diagnosed among these children. In Belgium, this same donor's sperm has been used by 12 fertility centres to impregnate 37 different women. At this stage, 54 children conceived with this donor's gametes have been identified in Belgium, each of them a potential carrier of the carcinogenic gene.

Gamete donation: a harmless practice?

The case came to light in Denmark in 2023, when two children from two different families who had used a gamete donor were diagnosed with cancer. After research traced the case back to the Danish sperm bank, The European Sperm Bank, it emerged that the sperm came from a single donor who himself carried a variant of the TP53 gene, associated with Li-Graumeni syndrome. This is a very rare syndrome that favours the development of early cancers.

In Belgium, at least 54 children were conceived by IVF using gametes from this same donor between 2008 and 2015. However, in 2007, Belgium passed a law to regulate gamete donation, limiting the number of women who could receive gametes from the same donor to six (Art. 55). However, it was not until 1 January 2024 that a national database (Fertidata) was set up to centralise and monitor sperm donations in Belgium. In future, this database should make it possible to effectively limit the use of gametes from the same donor, which was not the case before 2024. To date the FAMHP does not know how many times the rule of 6 women for one donor has been broken between 2007 and 2024. There could therefore be more than 67 children affected by the transmission of the pathological gene from the donor in question. Furthermore, given that several children in the same family are often conceived with sperm from the same donor, it is likely that this TP53 gene mutation affects several children in the same family.

Sperm donation: an open door to eugenics?

In both Belgium and Denmark, donors must undergo a series of medical tests to check that they are not carriers of the most common genetic diseases. The donor in question went through The European Sperm Bank, a private centre based in Copenhagen, which exports gametes throughout Europe. However, at the time of the donation in 2008, the link between this genetic characteristic present in the donor and the risk of cancer was not known. The link was subsequently established thanks to research by Dr Edwige Kasper, a biologist at Rouen University Hospital in France.

Against this backdrop, advances in genetics and the development of screening tests are now revealing a risk: that of increasing the number of genetic tests on donors to avoid transmitting diseases in the future. While the aim of having healthy children is understandable, the methods used raise serious ethical questions. Through the ever-increasing selection of donor gametes or the sorting of embryos to eliminate those carrying problematic genes, artificial procreation encourages a form of liberal eugenics in the name of beneficence towards the children thus conceived. There is also a growing risk that, in order to avoid any risk of genetic transmission of a serious disease, artificial procreation will soon be encouraged on a large scale, to the detriment of natural procreation, including for couples who have no problem conceiving naturally.

The risk of inbreeding: another facet of gamete donation?

The Danish sperm bank from which the donor comes has set itself a limit of one child for every 12 families, within the limit of 75 children from the same donor worldwide. However, as there is no exchange of data between IVF centres around the world, it is possible for samples from the same donor to be used for six Belgian families and twelve Danish families (Denmark being the largest supplier of gametes to Belgium).

This widespread use of sperm from the same donor in many countries poses two major problems. On the one hand, it can lead, as in the case in question, to a rare genetic disease being spread very widely at international level.

On the other hand, on a national scale, this massive use of gametes from the same donor can also lead to problems of consanguinity. In Belgium, the large-scale use of gamete donation, the anonymity of donors and the absence of a national register until 2024 make this risk very real. Aware of the medical and psychological problems caused by the anonymity of gamete donors, Belgian parliamentarians are calling for the creation of an Institute for the Conservation and Management of Donor Data (ICGD). A draft law on the subject is currently being examined.

The creation of a European legal framework may make it possible to limit the number of children conceived with sperm from the same donor, but it will only limit the risk of transmitting a disease without eliminating it. Dr Edwige Kasper also points to the psychological impact on children conceived in this way, who sometimes discover that they have a multitude of biological half-siblings within the same country or even across the world.