- No, damage to someone’s hearing doesn’t go away if everyone is nice about it. This is an overextension of the social model to justify not curing a medical condition.
- Medicine doesn’t restrict itself to treating fatal conditions. Also, this is why extensive research is needed before applying this to a person. This researcher is a maverick who is bypassing all the usual safeguards around this research. It doesn’t mean that we shouldn’t do the research properly.
- Just no. No such thing as an unborn child.
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- The capital D Deaf community react badly to this kind of thing. I mean like protesting outside the clinics badly. They view it as erasing their culture.
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I don’t think accommodations suddenly make a disability like deafness no longer a disability. Accommodations can only reduce its effects, and people get enjoyment from hearing things like music with the full spectrum of sound.
Unborn children cannot consent to participation in this experiment.
They also can’t consent to being deaf without trying a procedure that might give them the gift of hearing. Sometimes, it’s unethical to not give a treatment.
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I understand that you worry that this argument will be tied into that used by forced-birth advocates against legal abortion. These are, however, entirely separate issues and should remain so. In the case of abortion, it is the maternal right to bodily autonomy that reigns. In the case of genetic experimentation, an embryo is created outside of the womb using expensive and experimental technologies for the sole purposes of testing gene editing and then brought to term, where they may then suffer the side effects of experimental technology testing for the rest of their lives. They receive no input on this and have no means of modifying either input or outcome. This scientist is advocating creating human lives–regardless of what suffering the experiment not being perfect may entail–to advance his technological agenda. We have the opportunity to set the precedent of not tinkering with one’s future potential health in unaccountable, experimental, and risky way when one does not even exist yet to consent, informed or otherwise.
It doesn’t mean that we shouldn’t do the research properly.
Of course not. Subject the research to stringent regulation and oversight and focus on deadly conditions with no current or emerging treatments that therefore merit the risk.
There’s a world of difference between an inconvenience and a disability and accommodations can make a world of difference between giving someone with different abilities every chance to thrive or condemning them to limitations.
Sometimes, it’s unethical to not give a treatment.
There are other, less-risky technologies that could be brought to bear on this form of deafness, such as pre-implantation genetic testing of unedited embryos to choose one without the lesion. When such techniques are available, safe, and well-proven, the risky experimental technique is not justified.
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AFAIAA Research has never been restricted to “deadly conditions with no current or emerging treatments” in the past, though I think deadly conditions, as well as conditions that affect a large portion of the population is a fair choice for prioritization, as long as one is not suggesting that direction of research should be forcibly restricted by some (possibly politicized) body deciding what is and is not “appropriate”.
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as long as one is not suggesting that direction of research should be forcibly restricted by some (possibly politicized) body deciding what is and is not “appropriate”.
Why not? Drug regulatory agencies are concerned, first and foremost, with protecting patients from harm. It is on developers to demonstrate how harm is limited, well-known, and can be mitigated.
Because governments have long shown, repeatedly, that politics drives funding and allowance for research over sound science and the common good.
Don’t want public funds going to research you don’t like? That’s one thing. Telling scientists that politicians are going to decide what is and isn’t a valid path for research is how we end up with conditions that mostly affect minorities getting little attention in the first place.
Regulating the outcome of research is one thing. Telling researchers that science doesn’t get to decide the direction of science is how the Us ended up with crap like the stem cell ban in the first place.
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You must be aware that the FDA, NSF, NIH, and CDC are largely run by MDs and PhDs, not JD-toting politicians, right?
So you are telling me those organizations, and decisions such as restricting research on THC or stem-cells are the exclusive domains of scientists and politics plays no role in those organizations or policy decisions around research?
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Ah, you want to play the spherical frictionless cow game. Of course these agencies are not immune to political influence, but they are not run by it. You know this.
If you want to live in a state where technologists are free to inflict whatever experiment they see fit upon unwitting and non-consenting people, then create it and move there. I prefer to live somewhere where products are regulated proactively to minimize patient harm, especially in emerging technologies that we do not yet fully understand. That means regulatory agencies, which will never be fully perfect, but what we have with the FDA and similar is actually pretty decent considering the scope and complexity of their mandate.
I generate tanglespeak as a natural talent. It might be nature or nurture, I dunno. What it is is a big pain in the butt for my readers.
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