Imagine a scenario where a woman is seeking a sperm donor. She comes across an advert on social media where a man, JM, is offering his sperm through a private arrangement.
They meet up, the hoped-for conception happens, and a child is born. The woman, SW, allows the man to have contact with the child, although she, her partner, and JM had earlier signed an agreement that JM was to have no rights over the child or any contact.
About two years later, another child conceived using JM’s sperm is born to SW, but this time, both are pitted against each other in a court battle that ropes in two other women – all battling to deny JM any contact with the children they sired using his sperm.
It later turns out that JM has fathered 15 children using this donor arrangement, who are currently aged between a few months and four years.
Truth is indeed stranger than fiction, for this is a real case, handed down in the Family Court in England on May 24. It also emerges that JM suffers from Fragile X Syndrome, a genetic condition that according to various sources, causes developmental delays, learning disabilities, social and behavioural difficulties, physical abnormalities, anxiety and other problems.
At least one of the four children in the case had developmental difficulties. While the case was primarily a family law matter involving parental responsibility and contact orders, there are several ethical and legal considerations that emerge and we can touch on just three.
First is the place of regulation of gamete donations. JM was aware that he had Fragile X Syndrome and thus could be ineligible to donate his sperm through a licensed clinic, the reason he went for private arrangements through social media.
More than one of the 15 children he fathered might also have inherited Fragile X Syndrome, and will require speech, behavioural, and other forms of therapy going forward. Persons electing to use private arrangements for gamete donations ought therefore to carry out due diligence before embarking on such an endeavour. Further questions arise as to whether costs present a barrier to access, and whether genetic screening and gamete selection services should be available to all who want to procreate.
Secondly is the question of how or what we perceive disability to be. If we bar certain people from donating gametes, we are sending a message that certain characteristics are undesirable or unwanted. Several questions simultaneously arise – characteristics considered unwanted might vary from one person to another; or indeed from one community to another. Which ones are acceptable and which ones not?
The third issue concerns the utility of formal agreements. In this particular case, SW signed an agreement provided by JM but did not read the third page where JM had disclosed having Fragile X Syndrome. SW’s other signatory named as EG read it, but missed the reference to or did not appreciate the significance of Fragile X. The judge observed that the agreement was “a closely spaced three-page document in highly legalistic language which is difficult to read even for a lawyer.”
Parties to an agreement should thus insist on the use of simple language in an easily readable form – this might include the use of larger fonts and generous spacing. The case of SW should serve as a cautionary tale – take time to read, understand, and seek legal advice prior to signing an agreement.
-Dr Muiruri is a bioethicist and advocate of the High Court of Kenya. [email protected]