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.
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.
Wow, what a story! I’d love to read it. Thank you for sharing. I remember getting ads for egg donation when I was in grad school at Yale. I don’t remember how much they were offering but it was thousands if not tens of thousands, at a time when I really could’ve used the money. It’s predatory.
This is AMAZING! I've written a thesis on this back in HS. This is such an important topic that needs more voices. My article 'Children For Sale' gets at this same philosophical issue. Can't wait to see more.
I'm really looking forward to this series, Katelyn! These are such complex (and, for me, often disturbing) topics and I feel like I'm only recently dipping my toe into proper education on them. Thanks for your work here.
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.
Wow. Thank you for sharing. Gene therapy seems really promising! I pray it can help your daughters!
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
Wow, what a story! I’d love to read it. Thank you for sharing. I remember getting ads for egg donation when I was in grad school at Yale. I don’t remember how much they were offering but it was thousands if not tens of thousands, at a time when I really could’ve used the money. It’s predatory.
This is AMAZING! I've written a thesis on this back in HS. This is such an important topic that needs more voices. My article 'Children For Sale' gets at this same philosophical issue. Can't wait to see more.
That sounds awesome!
Really excited about this!
Thank you so much!
Thank you for your work, I just heard you on the RRM zoom call. I’d love to see how we can collaborate
Thank you, Deborah! Would love to interview you about your work!
I’d be honored.
This looks fantastic. Cannot wait to read more!
Thank you, Liana!
I'm really looking forward to this series, Katelyn! These are such complex (and, for me, often disturbing) topics and I feel like I'm only recently dipping my toe into proper education on them. Thanks for your work here.
Look forward to reading more of this, Katelyn!
Thank you, Ali!
I loved reading your post and look forward to reading more on this subject! 🥰 Cuz T!
Thank you for reading!