Suburban woman's donor-conceived sons both have autism. Should someone be held responsible?

  • Danielle Rizzo at home in West Chicago on May 25, 2019.

    Danielle Rizzo at home in West Chicago on May 25, 2019. Photo for The Washington Post by Taylor Glascock

 
 
Updated 10/3/2019 10:24 AM

After Danielle Rizzo's first son and then her second were diagnosed with autism, she has struggled with the how and why. She wondered whether she could have prevented the condition in her second child by putting him on a gluten-free and casein-free diet. Did she have her children, born 14 months apart, too close together? She even held off on vaccinating her younger son before he, too, was diagnosed not long after the first. (The supposed link between vaccines and autism has been debunked by extensive research. The American Academy of Pediatrics; National Academies of Sciences, Engineering and Medicine; Centers for Disease Control and Prevention; and other medical groups have compiled some of the many scientific papers.)

Rizzo came to suspect a genetic link involving the sperm donor for both children, after finding several other children conceived with the same donor's sperm who have also been diagnosed with autism or related developmental challenges. A geneticist with expertise in autism identified possible autism-risk genes carried by the children. Her story, in a Sept. 14 report by The Washington Post, prompted an outpouring of comments and questions -- legal, scientific and ethical -- about her case.

                                                                                                                                                                                                                       
 

A number of readers asked how common it is for serious genetic issues to be linked to donor sperm.

While there is no central database of donors and their children in the United States, some sperm banks try to mitigate risks of donors passing on genetic conditions by testing them for up to 400 common heritable conditions. But genetic testing is not required and is by no means comprehensive, as evident by the case studies reported in medical journals regularly.

In 2002, the BMJ, formerly the British Medical Journal, detailed the case of a sperm donor who may have passed down the genes for a progressive brain disorder -- which begins with speech and mobility problems between the ages of 20 and 50 -- to 18 children. In 2006, doctors reported in the Journal of Pediatrics that a sperm donor passed an extremely rare and dangerous skin ailment known as congenital neutropenia to five children born to four families. And a 2009 issue of JAMA described how nine of 24 offspring of one donor had a condition known as hypertrophic cardiomyopathy, which can lead to sudden cardiac death.

Many of the half-siblings in these clusters found one another in online communities for donor-conceived people and their families, such as the Donor Sibling Registry.

There's no simple genetic test for autism. Doctors can screen to see whether someone has genes that might lead to a higher risk, but it is often very difficult to interpret the results.

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What about the use of donor sperm, in vitro fertilization or other types of assisted reproduction? Could it have any impact on a child's development?

Rizzo asked this question of the CDC in 2015. Below is the CDC's response, which still represents the best available information, according to a spokesperson.

One of the biggest questions arising from Rizzo's case is that of legal liability, and how to assign dollar figures to the harm.

According to Rizzo's boys' "life care" plans -- put together by a team of doctors, social workers and other experts -- they will need more than $7 million worth of interventions. After Rizzo sued the parent company of the sperm bank she used, they offered her $250,000 to end the suit. Desperate for money to fund their treatments, she accepted, but after attorney fees and expenses, she and her ex-partner are left with a large gap. (A friend of Rizzo's has set up a GoFundMe page to help her with the expenses.)

While many cases involving the fertility industry have been unsuccessful because of the complexity of the law or have been settled confidentially out of court, there has recently been at least one large monetary award. In 2017, a trial judge upheld a medical malpractice verdict of more than $7.5 million in a lawsuit against a Syracuse, New York, clinic that failed to screen for cystic fibrosis.

                                                                                                                                                                                                                       
 

Many readers debated the ethics of screening sperm or embryos for autism if scientists develop a way to do it one day.

A similar soul-searching took place in Britain a few years ago when Britain's largest sperm bank banned men with dyslexia, autism or ADHD from donating. Critics accused the London Sperm Bank of promoting eugenics and trying to "improve" the human race through genetic selection. The country's fertility watchdog launched a review of the policy amid concerns it might illegally discriminate against tens of thousands of men. The clinic said it would withdraw the ban and that it would ensure "that all future donors are treated fairly and in accordance with the law."

In an essay this week in Above the Law, a website about law, law schools and the legal profession, Ellen Trachman, a lawyer in Denver specializing in assisted reproductive technology law, expressed mixed feelings about the idea of screening for autism: "There are those who don't think autism should be screened, even if it could be. Some argue that this would be a step too far down the road to eugenics and designer babies, since the human population needs to be neurologically diverse. After all, some brilliant and famous people may have been on the autism spectrum -- including Albert Einstein, Emily Dickenson, and Steve Jobs."

But, she wrote, "I'm inclined to agree that parents ought to be able to make decisions based on as much as information as possible. So good for Rizzo for vindicating that right."

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