What families impacted by schizophrenia think about preconception genetic testing

What families impacted by schizophrenia think about preconception genetic testing
We spoke to several families impacted by the condition to learn more about what living with schizophrenia is really like. If you missed it, you can check out our article that tackles common myths around schizophrenia. These families envision a future in which future parents have access to comprehensive pre-pregnancy genetic testing for common conditions, including schizophrenia.
Interviewed by Christina Ren, Certified Genetic Counselor

Given your experience, would you recommend that parents get genetic screening for common conditions, including schizophrenia, to see how their genetics could impact the long-term health of their future child?

We spoke with families affected by schizophrenia on what they think about using genetic testing to identify and mitigate genetic risk of schizophrenia for future generations. No matter their unique experience, they were strongly supportive. They know that mitigating such risks in the next generation does not take away from their loved one's experiences and diagnosis.

They mentioned that even knowing the possibility of their child having an increased genetic risk ahead of pregnancy is valuable. Parents can then choose what they want to do with that information. That might include being more prepared so as not to be “blindsided” by the unexpected, or opting to do follow-up embryo screening if desired.

This is what they had to say:

“Yes, definitely. It then makes you better prepared and you can make decisions on family planning.”

—  Lydia, mother of Anthony, 19, with schizophrenia

“I would encourage future parents to follow through on having the screening done because schizophrenia is just really devastating. It's heartbreaking. And there's nothing good about it for the people who suffer from it. I'm just glad my sister had some good times in her life, even if they’re not happening anymore for her.”

—  Becky, sister of Sylvia, 60, diagnosed with schizoaffective bipolar disorder

“Yes, definitely. It’s just such a heartbreaking illness and experience for these folks and their families...And what a better way to try to minimize the suffering.”

— Catherine, mother of Devin, 29, with schizophrenia

“If I could have done it, I would have done it. Also, if I had the option to pick between embryos and choose the one with a lower genetic risk for schizophrenia, I would. Because you wouldn’t want to knowingly bring someone into this world with it.”

— Erinn, mother of Ricky, 19, diagnosed with schizophrenia

“Every child is a roll of the genetic dice. The more you know, the better job you can do as a parent. Understanding your genetic makeup is part of that.”

— Laura, mother of son diagnosed with schizophrenia who passed away at age 23

Why?

The reasons why these family members were supportive of genetic testing were unique to their own experiences. Overall, they each expressed a deep heartache for the struggles their family member experiences and a desire to prevent that in future generations and families.

This is what they had to say:

“If I had known that I was bringing a child into this world who would suffer so badly, I would not have had children. It sounds horrible to say, but when you’re so connected to your children, their suffering becomes your suffering.”

- Laura, mother of Zac diagnosed with schizophrenia who passed away at age 23

“If you're going to have children, and you have the option of using science to avoid things that would be very detrimental to the life of your child and your family, I think that's definitely something worth doing. I mean, it's great to have diversity in the world, but I think if you can avoid having a debilitating illness, go for it.”

- Becky, sister of Sylvia, 60, diagnosed with schizoaffective bipolar disorder

“It’s medical progress and I think it’s awesome. We’ve invented vaccinations and medications to reduce human suffering, and I don’t see how this is any different.”

- Catherine, mother of Devin, 29, with schizophrenia

“You wouldn't wish schizophrenia on anyone...I would tell parents to do the testing. It’s better for everybody.”

- Erinn, mother of Ricky, 19, diagnosed with schizophrenia

“Genetic testing has actually crossed my mind for Anthony when he was around 17 or 18 and all of this started occurring. I even asked if there's any type of genetic testing, to see where this came from. Of course, that wasn't an option at the time. But you can’t help but wonder, where did it come from? I myself being adopted and not knowing my genetic background or history makes me wonder, you know, did I give this to him? Because I don't know my family history. So many questions.”

- Lydia, mother of Anthony, 19, with schizophrenia

18-year-old Zac and his mother, Laura in 2010 (Photo courtesy of Laura
Devin after being diagnosed with schizophrenia (Photo courtesy of Catherine)
Ricky age 19 playing the guitar (Photo courtesy of Erinn)
Anthony and his mother Lydia (Photo courtesy of Lydia)
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