[Discussion] Medical Quackery

This is a follow up to the thread "Medical quackery in the US upsets me very, very much". The aim of this current thread is to take up the discussion on medical quackery (widening the scope since the US isn't the only country concerned), discuss news item pertaining to it and the potential responses to address it.
The definition of medical quackery is not up for debate and includes, among others, homeopathy, vaccine skepticism, naturopathy, crystal healing, psychic healing.

Seth wrote:

Oh for sure. I’m only aware of CRISPR through the bio hacker community, and even then my readings are a bit out of date. Last I heard some bozo tried to make himself glow by CRISPRing some algae dna into himself.

I can’t shake the feeling that we invented gene editing about a century before we were ready to deal with the consequences. Like giving nukes to people in the 40s.

I can't imagine that ended well for him. I remember kickstarting a company a number of years ago that was trying to get glowing genes into an Arabidopsis plant (the best understood model organism for plant genetics) and they eventually went completely out of business trying to get it to work.

Seth wrote:

I can’t shake the feeling that we invented virtually everything about a century before we were ready to deal with the consequences.

People gonna people, man.

Crispr tech is very new, and currently very imprecise. It's great he has managed to (in theory) impart resistance/immunity to HIV. However, we have no idea what else he has done to them by doing this. We have no idea what impact this will have on future generations.

Seth wrote:

Where tf do we go from here? I mean insofar as dystopian futures go, gattacca isn’t the worst, but yeesh I literally can’t imagine all the ways this will affect our species.
Edit - this actually goes even further than gattaca did. This isn’t babies that represent the absolute best their parents could give genetically. It represents better than any human could naturally give genetically.

Gattaca would not let my children or myself be born, so I'm not sure I can agree with it "not being the worst."

As a MD, I'm not at all onboard with this news from China. "Ethically dubious" is too kind.

Eleima wrote:
Seth wrote:

Where tf do we go from here? I mean insofar as dystopian futures go, gattacca isn’t the worst, but yeesh I literally can’t imagine all the ways this will affect our species.
Edit - this actually goes even further than gattaca did. This isn’t babies that represent the absolute best their parents could give genetically. It represents better than any human could naturally give genetically.

Gattaca would not let my children or myself be born, so I'm not sure I can agree with it "not being the worst."

As a MD, I'm not at all onboard with this news from China. "Ethically dubious" is too kind.

Yeah, as much as I agreed with Jonman earlier that I am not surprised this happened I do think it needs to stop. What happens when this tool is used maliciously? This needs to stop and I don't care what country it is, as a human kind we need to shut this down or go the scientific route at least.

Thrawn you heard correctly that replacing this one gene does open up susceptibility towards other diseases, same I have heard. If I have learned anything in the past 3 years when I see this crap out in the media much like our dear leader, now days, it doesn't' go away so be outspoken and fight back on this crap.

Gattaca is a just plain bad movie.

A potentially more apt fictional parallel, at least for where this kind of research could go is the Beggars in Spain trilogy by Nancy Kress.

This is also presuming this is even real or in line with previous announcements regarding various genetic or genetic adjacent research that has been bogus/all hype.

The way this was done is very very bad. Like criminally irresponsibly bad. Likely a great deal of harm was done to the twin girls that were born, and if not it is from luck not skilled foreknowledge.

buuuut

this is an important tool with that needs to be explored responsibly, but has potential to do good that far outweighs the harm. To leave it behind would be the equivalent of refusing to do surgery because irresponsible or unskilled surgeons kill. Or refusing to administer chemotherapy because chemotherapy agents kill healthy people. or refusing to use anesthesia because pain is a part of the natural condition in therefore must be vital to healing (this is a real thing real intelligent doctors believed for nearly a century after anesthesia was discovered). The key is to fight loudly for it's responsible use, and to carefully monitor both the procedures and the outcomes.

This is gene therapy and it's the future. That said, the way it was done is like surgeons operating without anesthesia or antibiotics. It was unenthically done and fantastically irresponsible. Having said all that, IF we can splice genes with complete foreknowledge of the risks and benefits, then that's great! It's not even like GATTACA, because that's a movie about the past. With gene therapy, we could conceivably rewrite some genes in people after they're born, so it's not like you can't opt in afterwards.

They didn't even prevent people from being born or what-not. It wasn't selective abortion. They simply favored gene modification prior to fertilization, and then discriminated against the "naturally born." Don't think about it too deeply. It's about bigotry. The science of it doesn't work because if both the parents were genetically purged of possible genetic problems, then even "naturally born" offspring would inherit most of that by default.

And that's one of the problems with genetic modifications. We don't know what much of that stuff does and some of it may have functions that are non-apparent except in multigenerational observational studies. At some point, human experimentation will be necessary, but it'll have to involve a LOT of people over many generations.

IMAGE(https://comments3.fjcdn.com/comments/How+is+babby+formed+how+_56ab1a3c7795552138e13cc5e85dfc8d.png)

thrawn82 wrote:

buuuut

The amount of ableism in this thread is staggering (not just you Thrawn). You cannot compare genetic manipulation to pain management, it’s just not even remotely the same thing.
There is no “but” in ethics. History is rife with doctors who thought they could anything and everything to people because the knowledge gained was important enough. No. Just no. Anyone remember the Tuskegee Study of Untreated Syphilis? Yeah, sure, we learned lots. But the human cost was staggering, avoidable and unacceptable.

HP Lovesauce, I’m not sure what you think you’re contributing to the discussion.

There is a nonzero chance that gene editing, along with GMO crops and other advances, are all part of a complex brew of technology that will allow humanity to survive climate change (or other disasters).

I’m not disputing that it’s ableist - the contacts I’m wearing right now are ableist to some degree, as are (i realize this is a can of worms and I have no intent to defend it beyond this post) cochlear implants in toddlers. But I also acknowledge that this is inevitable and probably good for the species - just like contacts, lasik, and prosthetic limbs are.

I just wish we hadn’t pried Pandora’s box open with a crowbar.

Perhaps it is abelist, and i have roundly condemned what this doctor did. Can you blame be for also condemning the people who want to abandon completely the one technological field that has the hope of freeing my siblings (and since the likelihood of me having children is fast approaching zero, who entire family line's) potential descendants of KTWS?

That’s a false equivalence and intellectually dishonest. I’m talking about the desire to complete erase anyone who doesn’t fit the norm. That’s the issue here. Trying to “correct” us to fit a very rigid definition of “normal”.

I don't like being accused of intellectual dishonestly, I'm not trying to be. Would you break that down a little for me, because what I'm hearing is "your desire for your (sibling's) descendants to not suffer from KTWS is wrong and trying to erase who they are" and my intuition that's not really what you're trying to say and I am missing the message.

thrawn82 wrote:

Would you break that down a little for me, because what I'm hearing is "your desire for your (sibling's) descendants to not suffer from KTWS is wrong and trying to erase who they are" and my intuition that's not really what you're trying to say and I am missing the message.

I suspect it's a difference of perception of scope, where you are talking about eliminating a concrete thing that you consider a negative and Eleima is concerned about how society at large would classify things as being negative (is autism a negative? is colour-blindness a negative? is left-handed-ness a negative? is curly hair a negative?).

And I would say they’re both right. Humanity has confirmed that it can’t talk about genetics without bringing up eugenics.

Eleima’s fears are absolutely grounded, realistic, maybe even inevitable....because how many future parents are out there that would say “no thanks, Doctor, I’ll take the baby with Down Syndrome?” Certainly not Iceland.

I'll go ahead and say that diabetes is a negative and I've never met anyone who would rather be diabetic than not. If the treatment were pharmacologic we wouldn't be talking about ableism at all. I don't get why this is a discussion for these specific problems just because the treatment is genetic. What's the difference between a cybernetic enhancement and a genetic treatment? Both require Meld, in any case.

thrawn82 wrote:

I don't like being accused of intellectual dishonestly, I'm not trying to be. Would you break that down a little for me, because what I'm hearing is "your desire for your (sibling's) descendants to not suffer from KTWS is wrong and trying to erase who they are" and my intuition that's not really what you're trying to say and I am missing the message.

A false equivalence is a logical fallacy. It's a classic tactic we see a lot from people arguing for medical quackery. It's basically trying to equate two things which aren't even remotely comparable. Which is exactly what you did. I never said it was a conscientious, deliberate thing, but that's what you did. I'm cautioning against eugenics, and you're basically saying "but what about..." I see it all the time when we talk feminism too: you'll talk equal pay and someone will come along and say "but what about women in Afghanistan." It's exhausting.

Chumpy_McChump wrote:

I suspect it's a difference of perception of scope, where you are talking about eliminating a concrete thing that you consider a negative and Eleima is concerned about how society at large would classify things as being negative (is autism a negative? is colour-blindness a negative? is left-handed-ness a negative? is curly hair a negative?).

See, Chumpy gets it.

LarryC wrote:

I'll go ahead and say that diabetes is a negative and I've never met anyone who would rather be diabetic than not. If the treatment were pharmacologic we wouldn't be talking about ableism at all. I don't get why this is a discussion for these specific problems just because the treatment is genetic. What's the difference between a cybernetic enhancement and a genetic treatment? Both require Meld, in any case.

Diabetes is a disease. That's the big difference. You're not trying to correct a variation of the norm. That's a pretty big eff'ing difference.

The researcher in question used gene manipulation to render the twins immune to the HIV virus. How is that materially different from immunisation in terms of end effect? Being vulnerable to measles is a norm. Some people would argue that IS the norm. And some people choose that over immunity. You think that's a good idea?

You're concerned about eugenics. That's valid when Indian couples started aborting female fetuses and when Chinese couples did the same thing. That's when that was a valid concern.

In this specific case, the researcher did not select for anything we might consider a desirable norm, by which we're talking about recognisable disease entities that kill people.

Let's step into "clearly uncomfortable territory" for a bit here. Seth posted a link investigating the prenatal abortion of fetuses with Down's Syndrome. Whatever my stance on that, I hope everyone here can agree that when such a person is born and raised, they should have the same opportunities as everyone else and be treated fairly.

Let's say a researcher developed a gene treatment that fixed the chromosomal problem live - anytime you want, you can just have the treatment and no longer have Down's Syndrome. Would development of such a thing be discrimination? Is it bad to offer the treatment to anyone with the Down's Syndrome diagnosis?

LarryC wrote:

The researcher in question used gene manipulation to render the twins immune to the HIV virus. How is that materially different from immunisation in terms of end effect? Being vulnerable to measles is a norm. Some people would argue that IS the norm. And some people choose that over immunity. You think that's a good idea?

What is it with this false equivalency epidemic?!? Being susceptible to a disease is not the same as having your brain built differently!! Are you saying all people should be cis or hetero then, since that’s the norm? Because let’s not kid ourselves here, there is major talk to “fix” neurodiverse brains with genetic manipulation. That’s what I’m arguing against.
In fact, scratch that, I’m arguing for something even bigger. I’m arguing against research conducted outside the rules we have established for ethical research. I spoke of Tuskegee research, but no one’s batting an eye. How we come to acquire knowledge MATTERS. Ethics matter. You don’t just sign people up for research by drowning them in technical talk. It has become clear that that’s exactly what happened with He’s research. Informed consent exists for a reason. It’s not a complicated notion.

LarryC wrote:

Let's say a researcher developed a gene treatment that fixed the chromosomal problem live - anytime you want, you can just have the treatment and no longer have Down's Syndrome. Would development of such a thing be discrimination? Is it bad to offer the treatment to anyone with the Down's Syndrome diagnosis?

How about we ask people with Down syndrome? You’d be surprised at what you’d hear. A lot are happy with you they are. What they aren’t happy with is how society treats them. I really recommend the Netflix Explained episode on genetic manipulation. At the end, they interview a person with achondroplasia and you be certain that they don’t want to be edited out of humanity.
There’s a huge mofo difference between non lethal conditions and diseases.

There are so many ethical issues with what was done. 2 of the biggies for me were that humans who had no ability to provide consent had an extremely experimental technique inflicted on them. And a disease causing suffering wasn’t addressed, they had a new gene inserted to make them “better”.

I think most people would support investigating in properly controlled studies with informed consent provided to address diseases causing pain/suffering/death for which there are not alternative treatments. I treat sickle cell disease and oh my god could this be a boon for the millions literally living in agony with that bastard of a gene mutation. I can’t imagine one of my patients not jumping at the chance to be free of it. Of course most people living with this disease are poor and in Africa so they’ll never get a shot but that’s a whole ‘nother ethical dilemma.

What was done is none of those things and has to be stopped. Because if the technology is used to make people “better”, especially if they are infants/children, that’s how we achieve our dystopian future.

Plus, am I the only one who thought “so THIS is how the zombie apocalypse starts!”?

I don’t actually think thrawn has participated in a false equivalence. I don’t see where he has equated eliminating disease like ktws with eliminating people who were just born atypical. I think that we’re seeing a slippery slope fallacy, in fact. Advocating for eliminating disease doesn’t necessarily lead to eliminating all atypical people.

Like I said before though, that line of thought may not be thrawn’s, but Eliema is absolutely, terrifyingly correct when she voices her concerns for the population.

I believe I was quite clear that the manner in which the research was conducted was completely unacceptable to me. No one is contesting that, which is why no one is discussing the Tuskegee study. There is nothing to discuss. It is anathema. No one disagrees.

Genetic treatment isn't "editing people out of humanity." If you treat someone with achondroplasia so they have normal physiology going forward, they don't die. That's rather against the entire point of treating them in the first place.

Some people may not opt out of Down's Syndrome. That's fine. Treatments are supposed to be voluntary. But is developing that treatment bad? Is offering it bad? This isn't a rhetorical question. I would like to know your opinions. I have health problems. Current treatments are not good for them. If a genetic treatment were developed for them that worked well, I'd pay good money to get some. I would like for that treatment to be available. I'd like for ethical studies to be done to make that happen.

To me this is where the slippery slope lies:

Mother discovers via amniocentesis that her baby to be has trisomy 8. This can be “fixed” in utero to eliminate the extra chromosome. Your child won’t have Down syndrome. It would be nice to offer this to the child once they are old enough to provide consent but in reality once they have developed fixing that gene won’t have much/any impact.

Mom decides its either fix the gene or terminate the pregnancy. Couldn’t you argue that both would be erasing that persons identity?

I say this as someone who is profoundly pro choice and anti gene manipulation in a fetus. But I can also see where the ethical issues are headed and it is not all with evil intent.

It bears mentioning that we also screen newborns for various diseases that have tragic but easily avoidable outcomes. We don't ask the children whether they want thyroid supplementation, and nearly all parents opt to treat these problems before they have serious consequences. We do these things now.

LarryC wrote:

It bears mentioning that we also screen newborns for various diseases that have tragic but easily avoidable outcomes. We don't ask the children whether they want thyroid supplementation, and nearly all parents opt to treat these problems before they have serious consequences. We do these things now.

Not to mention more invasive and riskier procedures like prenatal surgery. Complex issue for sure.

I'm bowing out of this conversation. I made mention of my sister before Eleima commented. It wasn't in response to her comments. I was apparently advocating for eugenics by so. so I don't feel I have anything more to contribute here, i'll weigh back in again when we find some other quackery to discuss.

Seth wrote:

But I also acknowledge that this is inevitable and probably good for the species - just like contacts, lasik, and prosthetic limbs are.

Yeah, even 'normal' may be inferior before long.

edit, as it just hit me how to put this:

LarryC wrote:

Genetic treatment isn't "editing people out of humanity." If you treat someone with achondroplasia so they have normal physiology going forward, they don't die. That's rather against the entire point of treating them in the first place.

Just to pin down how I feel, the older I get, the less value I give to uniqueness. Give me the easiest road to happiness you can.

Not everyone feels that way though, and for people who don't, I think maybe this is the difference: it's editing an identity out of humanity. An identity has built up around that alternate physiology. The medical fact does not exist out of cultural context. The medical fact has interacted with society to produce a 'cultural' fact, if that makes sense.

I see tempers are running high and my point (which absolutely isn't "don't cure sickle cell") has been completely lost in the shuffle. In stead of a full response, I'll just leave this Economist article.
The era of human gene-editing may have begun. Why that is worrying (The Economist)

It may even be that editing will one day be used on embryos to enhance genomes (to make people cleverer, say), rather than to cure disease. But that requires regulators, policymakers, scientists and civil society to think through deep ethical questions. Work is already under way to develop principles for editing reproductive cells. Earlier this year the Nuffield Council on Bioethics, a think-tank in Britain, outlined two: that the changes brought about by gene-editing should not increase “disadvantage, discrimination or division in society” and that such changes should not harm the welfare of the future person. Such debate was always going to be needed. Now it is urgent.