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codedokode

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> decided not to have children

Most people seem to have a preference for having children.

> People must be more responsible.

That's another preference, but unfortunately for you it's a minority preference while preferences are averaged (democracry) then encoded (law) at the society level.

So what's happening is the opposite: people who prefer not having children will be made to subsidize the costs of these expansive treatments.

What's interesting is that there's also a taboo of editing DNA, but this decision shows the societal preference for having children is greater than this taboo.

So maybe this taboo is just a preference after all, or a path dependant result due to the precedent of eugenism?

What genes do you think we should be testing for and which ones do you think are severe enough that you parents with those genes shouldn't have children?

Almost everyone has some sort of gene that isn't great. They might have a family history of Alzheimer's, maybe a family history or some sort of cancer, or bipolar disorder, or any other of 100 different serious illnesses. Humans would go extinct if we only allowed those with perfect genes to reproduce.

Oh, and with sickle cell, you're going to be in particularly hot water with suggestions like that given the fact it's mostly African Americans who have the gene.

I doubt this. If majority of population had severe incurable diseases then humanity wouldn't survive, and healthcare would collapse. I think (sorry, no statistics) that majority of population are healthy enough to do hard physical work.

Consider that traits can be recessive (like sickle cell anemia) so a healthy population can still produce children with severe incurable diseases.

I never said the majority of the population has severe incurable diseases. I said that have genes that aren't great (maybe they have a predisposition for certain diseases or they're a carrier but are healthy themselves).

Also, many diseases don't effect you until after you're past reproductive age. Evolution doesn't care if you get Alzheimer's at 70 but it still has a fairly large burden on our modern day society.

Sickle cell is particularly interesting because the gene that causes it makes the carriers less susceptible to malaria. So there actually was an evolutionary pressure for people in areas with high levels of malaria to have it (which is why it's so common among African Americans). Apparently it's better to die of sickle cell at 40 after you've had kids then die of malaria when your 10.

You're going to want to avoid using language straight out of GATTACA if you want to have a real conversation on this topic.

We voluntarily did DNA tests on both of us to rule out any parental defects, as well as tests in utero to see if there were issues. Luckily there were none, but we had some discussions on what we might do. It seems reasonable and responsible to perform these tests to be informed on your major life choices.

It seems reasonable from an informed person choice perspective, but (imho) rather uncomfortable as a government mandated breeding incentives program.

If you don't mind sharing, what was the (rough) cost to you for the testing?

I think insurance paid for the tests in fact. We had the doctors collect stem cells from the umbilical cord and they're stored at some place. That was like $1000 each kid, and $100 a year to keep. But after like 10 years you get some money back if you don't use them and they get "donated" to someone or to research.

This feels like the plot to a dystopian science fiction story. You’re effectively arguing in favor of eugenics…

For the ignorant, Wikipedia also says that Sickle Cell disproportionately affects Africans and people of African descent (75% of cases are in Africa).

> According to Wikipedia, sickle cell disease is a genetic disease meaning that it is caused by mistakes in DNA. If parents did DNA testing and were warned that they are carriers of invalid DNA and decided not to have children, maybe there would be no need to do costly research and expensive treatment.

The sickle cell allele is also a malaria resistance allele. Heterozygous = malaria resistance. Homozygous = sickle cell disease.

Eugenics through breeding control in general is quite problematic, but deliberately breeding out disease resistance just seems like a particularly bad idea even beyond the general problems with eugenics.

There are other DNA mutations that give no advantage. For example, a mutation that causes nerves to die gradually.

> There are other DNA mutations that give no advantage

Yes, but that's not relevant to this discussion.

Newborns are already screened at birth for SCD in the US.

https://www.cdc.gov/ncbddd/sicklecell/documents/factsheet_sc...

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