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Sunday, September 15, 2019

IVF and ASD

Uncertainty and complexity are major themes of The Politics of Autism.  The topic encompasses many unanswered questions and affects people in diverse and unexpected ways.

At The Washington Post, Ariana Eunjung Cha reports on Danielle Rizzo, whose two sons are autistic.  Both were born as a result of in vitro fertilzation.
Rizzo filed a lawsuit in U.S. District Court for the Northern District of Illinois in July 2017. In her complaint, she alleged that [the sperm donor's] online profile was a lie and that he was not an “appropriate candidate for sperm donation.” She sued Idant and Daxor, Idant’s former parent company, under the state’s consumer fraud and deceptive practices act.
She says in the complaint that research, based on public documents and calls to his relatives, showed that the donor had no college degrees, had been diagnosed with ADHD, and “went to a school for children with learning and emotional disabilities.” (Idant, and other sperm banks, generally do not verify their donors’ medical and educational backgrounds.) Moreover, her attorneys wrote in the filing, “Donor H898 is a prolific sperm donor who has fathered at least 12 children through sperm donation, and that each of those children has either been diagnosed with Autism, or suffers from signs and symptoms associated with Autism.” In court documents, other mothers corroborated the story.
 Guidelines from the Society for Assisted Reproductive Technology, which represents fertility clinics in the United States, call for mandatory genetic testing for only one disease: cystic fibrosis. But most clinics say they test for several hundred. There is no test for autism.
...

As of August, Repro Lab was still selling vials, priced at $450-$525, from the donor. A Repro Lab official said they received a report from an anonymous caller regarding an increased risk of autism, but the report was “unsubstantiated,” as the donor “did not report any history of autism in his family.”
“We would deny participation to a donor in our program if he or any first-degree relative had a history of autism,” the company said.
Self-advocates strenuously object to such policies.

 In The Politics of Autism, I write:
Consider the next possible step for in-vitro fertilization. Suppose that scientists refine pre-implantation screening so that they could tell whether a particular embryo’s genetic make-up entails a high probability of autism.  If so, then doctors would presumably discard it in favor of another embryo that they would implant in the mother’s womb.  Some say that we need to debate the use of such techniques to screen for autism.   Ethicist Wesley J. Smith disagrees: “That is like saying allowing eugenic cleansing for racial features is a debate we need have: Both are invidiously discriminatory and have no place in an enlightened, equality-believing society.”