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AnneS's avatar

I have 2 kids with an inherited genetic syndrome that causes profound hearing loss, progressive vision loss, and balance impairment (Usher Syndrome.) We met with a genetic counselor as part of their diagnosis and one of the things offered to us was if we wanted to have more children they could create embryos and test them and then we could discard the “unhealthy” embryos. They said this while my daughters were in the room. We said no thanks and went on to have 2 more children (we have 5 total) who ended up not having Usher syndrome. They could be carriers but we have not had carrier testing done for them. I would 💯 sign on to CRISPR editing to cure my girls. It’s devastating to watch your children go blind. However, never in a million years would I say that it would be better if they weren’t here at all. We go to medical conferences hoping for cures, staying updated on research, and praying that the treatments we can avail ourselves of will be ethical and uphold the dignity of our kids.

Emily A. Hancock's avatar

Very much looking forward to this series. These topics are both fascinating and frightening and so deserving of critical, smart assessment and investigation.

My brush with these industries was one I didn’t follow through with thankfully, but I came pretty close to donating eggs when I was 19. I was a heroin addict at the time and only chose to pursue “donation” for the money but backed out because I knew what I was doing was wrong on my end and theirs. The woman who I had been working with actually was charged at the federal level for defrauding the women who did go through with it, as she didn’t pay them.

I wrote about it at the below link, I have it paywalled but am happy to comp you if you are interested! I wanted to highlight the desperation many women are experiencing that influences these choices. Just let me know if you need a comp.

https://open.substack.com/pub/theworkofwomen/p/that-one-time-i-almost-donated-my?r=1ljam1&utm_medium=ios

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