[Contents: ableism, eliminationist rhetoric, fat hate]
I briefly mentioned this article on Twitter yesterday: What Fetal Genome Screening Could Mean For Babies And Parents. That's a donotlink link, by the way. The article was published in Scientific American.
I'm not even sure I can adequately express how deeply I'm disturbed and frankly disgusted by the attitudes expressed by the scientists in the article. The first few commenters are even worse.
Basically, some bioethicists at Brigham & Women's Hospital in Boston, MA have published in The New England Journal of Medicine that YUP, parents should be able to get this with appropriate genetic counseling services.
That in and of itself isn't necessarily so bad, although "genetic counseling" leaves open a big door and there's lots of variation as to what it includes and entails. Then you get in to their reasons for arguing this. The big one cited is "Parents may emphasize diet and exercise more for a child at heightened risk of diabetes, for instance."
BECAUSE YES, SINGLING OUT A KID FOR DIFFERENT TREATMENT FROM DAY ONE FOR A DISEASE THEY DON'T HAVE BUT MIGHT GET IS SUCH A GREAT FUCKING IDEA, FOLKS.
I just... look. If you are different as a kid already, that's hard enough. Kids who have illnesses that require treatment, like special diet plans, medication, or other treatments visible in public, are incredibly stigmatized on a routine basis. And while the article makes the point that genetics do not guarantee a disease, this argument for fetal full genome sequencing completely ignores that. It's arguing you should treat your kid differently on the basis that they MIGHT get a disease (a disease we associate with OMG OBESITY, by the way - I don't think THAT'S a mistake), marking them from early childhood on as someone who's less than, someone to be pitied, mocked, someone who's impure.
The rest of the article is from some other scientist all dismissive of "perfect baby quest" concerns, and all "WELL IF PARENTS WANT IT THEY SHOULD GET IT". Which is a shitty, shitty argument. "Well I want it" is no basis for a solid ethical decision. And her reasons for dismissing ethical dilemmas about the potential for parents terminating a pregnancy because they found out they fetus' eyes would be brown instead of blue, for instance, is "well not everyone would get it". Which doesn't eliminate the ethical problems at all! And there's a brief mention of "well fetuses can't consent", but it doesn't even remotely touch on what the ethics are of having your genetics on record before you're even born, much less consent. Can you imagine insurance companies with that information, for starters?
Then you get to the comments, and the first few are so deeply ableist and eliminationist, jesus fucking fuck. They straight up say there are no ethical problems with this, and raising a child with an illness or disability is not loving. "That's the unethical thing", one person says. You'd be a bad parent to not get it is strongly implied, because giving birth to a kid with a disease is abusive.
Yes folks, someone argues that it's unethical for people with disabilities to even be born.
I... holy shit. This person thinks I shouldn't have been born. This person thinks that my kid shouldn't be born, because I opted for absolutely zero genetic testing or screening. This person thinks that a whole fucking bunch of people I know shouldn't have been born, because they weren't born "perfect".
Holy. Fuckball. Shit.
So yeah, you're damn right I disagree.
I absolutely think there is an ethical debate to be had here.
In some respects, this is a debate many pregnant people and their partners have. The Man and I had a discussion about it, although in our case the discussion was short. While full genetic sequencing was not offered to us, we were offered other testing, including a nuchal translucency scan, a quad scan, chorionic villi sampling, and more. We turned them all down. Part of that, honestly, is because The Kid is at low risk of developing anything those are testing for. The bigger part of it is that even if The Kid did have something that was being tested for, such as trisomy 21 (better known as Down syndrome), we wouldn't do anything about it. We wouldn't terminate the pregnancy. We'd have The Kid, and we'd love them, and raise them the best we could. The Plan would not change.
We did get the "standard" anatomy scan between 18-24 weeks. If that had discovered that The Kid had a condition wherein there was no way they would survive to term or outside my uterus, at that point we would have terminated. If that had discovered Trisomy 18 (also known as Edwards syndrome), where the majority of fetuses die before birth, and approximately 8% of those who are born survive past the first year, that would have prompted more conversation, although we likely would choose to continue the pregnancy anyway, with monitoring.
Those are our decisions. (And shoutout to my midwife and OB who are 100% supportive of them.) And yet this commenter thinks those are unethical. Wow.
But if you think that if a fetus has a disease, or a potential for a disease down the road - because let's be real, 99% of what fetal genome sequencing would find would be the potential for a disease - then that fetus shouldn't be born, where do you draw the line? Obesity is considered a disease - should fetuses with higher risk of obesity not be born? Ehlers-Danlos? What about my Hashimoto's? What about schizophrenia? Cancer? Does it matter what kind of cancer? Diabetes? Does it make a difference if it's Type 1 or Type 2?
Because here's the thing - we all get sick. Each and every one of us. Every single one of us carries within us the potential for a whole host of things, from heart disease to cancer to fuck all knows what else. And genetics are not a guarantee of disease. We don't even know which genes are tied to which conditions, in most cases, much less how the complex interplay between genetics and environment determines who gets what and when. We just cannot predict, outside of a few things diagnosable in utero, what any fetus will get in their life after they're born.
Moreover, we rank diseases and disabilities. I've already done it a few times in just this piece. I think most if not all of us have that sort of internal ranking. "Well Hashimoto's is bad and an autoimmune disease, but it's not thyroid cancer" is another one I have. I also think that our wider society's rankings of disease and disability go beyond their treatability, the pain and suffering they cause, their risk of death, etc. and gets way in to aesthetics. See also, obesity is considered a disease. As I mentioned earlier, I don't think it's a mistake that "diabetes" was the example given by the bioethicist arguing for fetal genomic sequencing. We perceive Type 2 diabetes as preventable, as well as caused by obesity - which we also consider preventable. It's one of the diseases where society really likes to blame the person for getting it.
And to use that potential of disease or disability as a screener to determine which fetuses should be born or not is so abhorrent. Even if they do have the potential for something that's really scary, that's not a guarantee. Conflating giving birth to a fetus with the genetic potential for something you don't like with abusing that child, or with a death sentence, is mendacious as fucking hell, not to mention unethical.
Finally, the idea of health at every cost comes out here. As if we owe it to ourselves, to society, to our children, to be absolutely healthy. To do everything we can to be healthy. And let's be real, it's a real narrow definition of healthy that's always used here, and it absolutely includes "not fat". It also doesn't include "uses a wheelchair", "has a mental illness", or "has a chronic disease that limits their activity". We're all supposed to be thin, preferably white, happy, active, totally able-bodied people. Anyone outside those parameters need not apply.
Fuck that.
Fuck that narrow definition of health, and fuck anyone who thinks I owe fitting in to that definition to them or to "society". And fuck anyone who thinks that as a presumptive parent, I owe it to anyone for my children to fit that narrow, ableist, racist, hateful mold. Fuck the entire idea that if you and your body and mind are less than "perfectly healthy", that you shouldn't be here. Fuck that fuck that fuck that.
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