In the spring of 2010, I went to the studios of KQED in San Francisco to record an interview with a radio show on the BBC about PGD. Preimplantation genetic diagnosis. I haven’t thought much about the issue in the near ten years since then. Which in a personal sense certainly reflects my luck and circumstance.
But I’m thinking about the issue after reading this story from Emily Mullin, We’re Already Designing Babies: Expanded genetic testing of embryos represents a new era of family planning. But how far should the technology go?:
JJill Pinarowicz’s life has been shaped by a mutation in her mother’s DNA. The genetic error gave her two brothers a rare disease called Wiskott-Aldrich syndrome….
Both of Pinarowicz’s brothers passed away from complications of the disease. One died as a toddler, before she was born, and her other brother died at age 18, when Pinarowicz was a teenager.
Pinarowicz thought it would be too risky to have her own children….
The technique is called preimplantation genetic testing (PGT). By using PGT together with in-vitro fertilization, Pinarowicz and her husband had a healthy son in May 2017.
An incredible “feel-good” outcome so far. And not surprising. I have become more conservative about technology since I first started writing on the internet in the early 2000s, but I will never oppose these sorts of genetic technologies that allow couples whose offspring are at high risk of developing serious debilitating conditions to avoid these scenarios. But the magnitude of how common this now took me aback:
The U.S. Centers for Disease Control and Prevention (CDC) reported in January that PGT was used in 22 percent of IVF cases in 2016, up from just 5 percent in the previous year.
Since the last statistic Mullin could find was from 2016, it’s almost certain that the proportion is greater than 22 percent today. The numbers for 2018 seem difficult to find, but it seems likely that ~75,000 live-births per year in the USA are now due to IVF. Worldwide there are in the range of 10 million humans alive today due to IVF.
How relevant IVF is to fertility varies by social and demographic variables. I know a fair number of people who have done IVF. The average age of a mother at her first birth is 32 in San Francisco and 31 in Manhattan. As many of you probably know many options relating to fertility and genetic testing come “online” for American insurance companies at age 35.
When you transform blue-sky exotic basic science into mass technology they become far less controversial. One of the major themes of Carl Zimmer’s new book, She Has Her Mother’s Laugh, was the vocal and mainstream nature of 20th-century eugenics. A major criticism of Robert Plomin’s Blueprint is that it was resurrecting genetic determinism. Let me quote Mullin:
In Iceland, for instance, the widespread availability of prenatal genetic testing has meant that nearly 100 percent of women choose to abort a fetus with Down syndrome, which has led to a near eradication of babies being born with the condition.
What is in a word? Something in the future is worrisome. Something that professional dual-income-no-kids couples do in their attempt to attain the classic bourgeois lifestyle is not so worthy of comment? Outside of the pro-life movement the discussion of the ubiquity of screening for Down syndrome seems rather muted, even though it is widespread. While we may furrow our brows over decisions made based on polygenic risk scores, the reality is that the age of Mendelian screening is here. It is not speculative science, but applied medicine.
Call it what you want to call it.
It’s not something I think about much.
Indeed, I sometimes think about the opposite problem. https://www.fourmilab.ch/fourmilog/archives/2019-02/001807.html
I should think that the latter, not the former, is the more serious problem to think about. The latter is potentially existential. The former is most certainly not.
You said “I will never oppose these sorts of genetic technologies that allow couples whose offspring are at high risk of developing serious debilitating conditions to avoid these scenarios.” but you also seem concerned about the near elimination of Down’s Syndrome in Iceland. Down’s Syndrome is terrible from a societal POV and any happiness that mothers get will also apply to a child without the disease. I’m not sure why you are specifically concerned about that.
but you also seem concerned about the near elimination of Down’s Syndrome in Iceland.
don’t ever read between the lines. i’ve posted on this. i am not concerned at all. on the contrary!
but, i do find it interesting that educated liberal professionals who are worried about ‘eugenics’ never mention this….
A lot of them are pretty vocal about it, at least here in Europe. Both leftists and religious people, the latter being otherwise conservative or not, oppose it.
What unites them is an irrational moral,
a perspective on the issue based on ideas which have nothing to do with the real world we are living in. Its finally based on the Christian disdain for the physical world and concepts of the immaterial soul in all of them. Even if they are atheists and deny it, thats where its coming from.
Someone mentioned that they have a talk on this topic at Harvard/Yale/Stanford and asked a crowd of undergrads to raise their hand if they were an IVF child. About 10% of the crowd raised their hands.
This is believable because of who can afford IVF – upper middle class and above – and who needs IVF – older couples who probably went to grad school plus.
My point is elite opinion supports IVF. My wife and I were older and each of our children were genetically screened. No need for IVF, but if the minimum downstroke was $20k for IVF, I sure as hell would spend the extra $1k for trait testing.
“but, i do find it interesting that educated liberal professionals who are worried about ‘eugenics’ never mention this….”
I imagine that what people have afraid when they are worried about “eugenics” is essentially the eventual restriction of the rights of the potential parents (thing like forced – or “nudged” – esterilization or eventually special breeding programs where people are “incentivized” to mate with the “right” partners), not the rights of the potential children
Down’s syndrome elimination is problematic in a way PID is not. PID is the choice to implant the healthy embryo and not the sick one when you have a number of embryos at your disposal and some will be discarded anyway. With Down’s, you have the abortion of children who are normally (or were until very recently) well past the first trimester (lots of reports of children surviving the abortion) and whom parents may already have bonded with in some way. It’s choosing to kill an existing baby because it does not conform to expectations, under considerable pressure from doctors who urge a fast decision, and under societal pressure because increasingly people with a Down’s child encounter hostility. Having a Down’s child used to be fate, now it’s seen as an irresponsible choice. I know of no parent who has ever regretted PID, but I do know of women who have regretted aborting their trisomy 21 baby, and who found the experience hurtful or even traumatizing. PID is relatively unequivocally a good thing. But routine prenatal diagnosis forces decisions on parents that some would prefer not to have to make.
Would I think negatively of a woman/couple that chose to bring a Down’s child into the world when they had the choice? Yep.
If you believe that unborn people have sinless souls, which will go to heaven upon their physical deaths, aborting a trisomy-3 fetus would be a gift.