A cluster of 12 children conceived from the same sperm donor all have autism spectrum disorders, prompting questions about the oversight of US sperm banks.
Danielle Rizzo from Illinois had two children in 2011 and 2012 using sperm donation. Both boys were subsequently diagnosed with autism, and after contacting other parents who had used the same donor, Rizzo discovered that almost all her sons' half-siblings are on the autistic spectrum. A genetic counsellor told Rizzo that the possibility of this happening by chance were extremely remote.
'There really needs to be regulation and oversight in this industry and that's why I'm coming forward,' Rizzo told CBS2. 'This needs to change.'
Rizzo and her partner selected donor H898 from sperm bank Idant in 2011. His profile said he had a Masters in Medical Photography and a clean bill of health. Rizzo called Idant before placing the order to check that they had verified the donor's background, and received assurances that they had.
Both boys, now aged seven and eight, began showing signs of autism by age two. Unable to find childcare to meet her sons' needs, Rizzo had to leave her job, her relationship broke down and she lost her home.
Rizzo has subsequently learned that at the time she verified the donor's information with Idant he did not have a degree of any kind. It also came to light that he had delayed speech as a child, and was diagnosed with ADHD, Pervasive Developmental Disorder (a form of autism spectrum disorder) and attended a school for children with learning difficulties.
Rizzo contacted the FDA (Food and Drug Administration), and healthcare regulators in New York and California (where Idant claimed to be regulated) but none were able to help. She sued the sperm bank in 2017 and ultimately reached an out-of-court settlement in March 2019.
Rizzo said she contacted several banks stocking H898's sperm and warned them about the autism cluster, but was told she had no proof. The Washington Post confirmed that some banks are still advertising H898's sperm for sale.
For the last few years, Rizzo has been working with Dr Stephen Scherer at the University of Toronto in Canada who had been studying the genetics of autism for over 20 years.
There is no genetic test for autism. Many factors are known to affect the likelihood of autism, including paternal age and pregnancy complications, as well as over 100 genes. However, Dr Scherer is researching a small subset of these genes which he calls 'high impact'.
Two such mutations, MDB1 and SHANK1 are present in Rizzo's older son. His brother, and all seven of the half-siblings tested so far have at least one of these. Rizzo herself has neither.
Rizzo maintains that she did not sue because her sons are autistic but 'to right a wrong'. She wants regulators to impose stricter oversight of the sperm bank industry.
'If I knew then what I know now, I don't know if I would have ever used a sperm bank,' said Rizzo.