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Is this article a carnival sideshow? "<Family/Individual> had <unusual genetic disease you're unlikely to ever encounter> that caused <visible differences from

Is this article a carnival sideshow? "<Family/Individual> had <unusual genetic disease you're unlikely to ever encounter> that caused <visible differences from other humans>" I get it, we like to look at situations where people are different, but does this actually inform, educate, or improve us by reading? Or is this article just a chance to point out some people who are different. I've been thinking about this recently, and trying to moderate my curiosity (because blue skin certainly piques my curiosity) against what I'm trying to get out of the article and what the people in the article get out of the article. Is the Fugate's family improved by this? What about other people with methemoglobinemia? Are their lives improved? Another way to think of it is, who benefits from this? Who is being put on display? Edit: I ask because I think these are important questions to ask, and because I genuinely have a difficult time telling sometimes. It's useful to see responses of how others interpret this.

irrational 7y ago
Well, if I saw someone that had blue skin (from the comments we know that there are still blue skinned people around), I'd probably be extremely curious, stare, ask awkward questions in my head, etc. But now I know, from reading the article, that it's just a blood issue and it no longer seems strange.
- Pfhreak 7y ago
  Sure. That makes sense. I can definitely see the value for more common issues someone is likely to run into in their lives. Do you think that was the intent of the author?
echelon 7y ago
This article is biologically fascinating! It detailed the genetics and the biochemistry involved, but also included a rich history of those affected. It's a synthesis of things that interest us. Alzheimer's, cancer, and other disease states are also hugely interesting. That's one of the reasons people study them (in addition to the desire to save and improve lives). Human stories often intersect with biology. Henrietta Lacks and the HeLa cell line...
- Pfhreak 7y ago
  I think that this article might meet those criteria, I still think it's important to ask questions like this about articles like this. Because it really is a fine line between putting people on display (like we literally used to do when we kept other humans in zoos) and examining the various biological traits in humanity.
  - soneca 7y ago
    So you commented before reading it? Your critical thinking would be more useful in any other article that you believe does not match that standard.
    - Pfhreak 7y ago
      I've read the article. I commented after reading the article. I asked questions because I was curious how others would answer them. Because I had not reached conclusions to them myself.
tathougies 7y ago
> Another way to think of it is, who benefits from this I don't know about the Fugate's condition, but hemoglobinopathies are among the most common genetic diseases, and several are known to cause very severe symptoms when inherited in a dual-recessive fashion (like thalassemia and sickle cell anemia). It's unethical to conduct reproductive research on entire family lines, but when there is a pre-existing case study, one wonders what one could possibly learn about hemoglobin and why it seems to be a relatively dynamic protein. Just a thought as someone who does have a mild form of multiple thalassemias.
wespiser_2018 7y ago
Most simply, you should now have ready example of a recessive phenotype, "Fugate Blue", that will allow you to immediately understand how all other recessive genetic diseases work. Further, this is an example of a rare genetic disease, of which there are thousands. However, instead of needing an expensive research project to find a cure, a simple off the shelf chemical will do. So if you are ever reading about "Orphan Drugs", you'll also have an example of a successfully treated rare genetic disease!

irrational 7y ago

Well, if I saw someone that had blue skin (from the comments we know that there are still blue skinned people around), I'd probably be extremely curious, stare, ask awkward questions in my head, etc. But now I know, from reading the article, that it's just a blood issue and it no longer seems strange.

Pfhreak 7y ago
Sure. That makes sense. I can definitely see the value for more common issues someone is likely to run into in their lives. Do you think that was the intent of the author?

echelon 7y ago

This article is biologically fascinating! It detailed the genetics and the biochemistry involved, but also included a rich history of those affected. It's a synthesis of things that interest us. Alzheimer's, cancer, and other disease states are also hugely interesting. That's one of the reasons people study them (in addition to the desire to save and improve lives). Human stories often intersect with biology. Henrietta Lacks and the HeLa cell line...

Pfhreak 7y ago
I think that this article might meet those criteria, I still think it's important to ask questions like this about articles like this. Because it really is a fine line between putting people on display (like we literally used to do when we kept other humans in zoos) and examining the various biological traits in humanity.
- soneca 7y ago
  So you commented before reading it? Your critical thinking would be more useful in any other article that you believe does not match that standard.
  - Pfhreak 7y ago
    I've read the article. I commented after reading the article. I asked questions because I was curious how others would answer them. Because I had not reached conclusions to them myself.

tathougies 7y ago

> Another way to think of it is, who benefits from this I don't know about the Fugate's condition, but hemoglobinopathies are among the most common genetic diseases, and several are known to cause very severe symptoms when inherited in a dual-recessive fashion (like thalassemia and sickle cell anemia). It's unethical to conduct reproductive research on entire family lines, but when there is a pre-existing case study, one wonders what one could possibly learn about hemoglobin and why it seems to be a relatively dynamic protein. Just a thought as someone who does have a mild form of multiple thalassemias.

wespiser_2018 7y ago

Most simply, you should now have ready example of a recessive phenotype, "Fugate Blue", that will allow you to immediately understand how all other recessive genetic diseases work. Further, this is an example of a rare genetic disease, of which there are thousands. However, instead of needing an expensive research project to find a cure, a simple off the shelf chemical will do. So if you are ever reading about "Orphan Drugs", you'll also have an example of a successfully treated rare genetic disease!