rohanseth · HackerTrans

7 ปีที่แล้วdiscuss

Lydia's father here. If I wasn't fighting this fight, my fight would be to push for prenatal exome sequencing. I acknowledge it's not as black and white -- there are some ethical concerns about how to process the data, but give the parents the choice.

rohanseth

7 ปีที่แล้วdiscuss

Yup, that's fair. We took some creative license here, but couldn't quite figure out how to succinctly explain that we want to go beyond just academic publication and share everything.

rohanseth

7 ปีที่แล้วdiscuss

This is our bad. When we had shared at Google, we thought the cost would be $2 million. We didn't include the money we had put in or received, so we shared our goal as $1.5million.

Before sharing more publicly, we decided to update to the actual amount and had also learned that some costs would be higher than expected (toxicology package would be higher, clinical care wasn't going to be covered by insurance etc.). We had put a little note describing this in the FAQ, but I understand that no one reads those.

For what it's worth, our goal from the very start was to openly share the process and logistics because we are truly convinced that this N-of-1 process can be repeated quite easily. Perhaps, at the very least we can squeeze the time for the next motivated parent to learn all this from 6 months to 1 months.

rohanseth

7 ปีที่แล้วdiscuss

I'm really sorry to hear about your son. I'm Lydia's father (the author of the medium post). What you shared is my biggest concern about going forward with Lydia's treatment. We are confident that the treatment will help her brain development, but to your point, there's a chance that will hurt her quality of life. We just don't know. How do you make a decision like that?

I think about this a lot and don't have good answers. All I can say is that I have 3 goals for my daughter - and she doesn't need to be a 100% normal child to achieve any of those goals. 1) I hope my child is not in pain 2) I hope my child feels loved 3) I hope my child can find beauty in the world.

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