[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.

I think at the extremes most people are in agreement. Using technology to cure a painful disease is good. Editing an embryo to obtain preferred traits is bad.

I think where it gets stickier is when we are dealing with in utero disease. If you knew a baby was going to be born with sickle cell disease, why not fix it before they are born? But what about muscular dystrophy? Huntington’s disease? And is that ableist to consider those unwanted conditions?

It’s such a slippery slope. Once you open that Pandora’s box then I think it gets to be more and more grey as to what is a disease and what is just different from “normal”.

That's why I drew a line in the sand with Down's Syndrome. There is no germline modification going on with it. You're just fixing the doubled up chromosome. If it could be fixed, then I am absolutely completely okay with parents choosing to have it fixed. Not abortion. You just choose to not have it. That's it.

We're not saying people who have it should be mistreated. This isn't saying they're lesser people. This is just something parents can choose for their kids, just like treatments for newborns. We could withhold thyroid supplementation for people with Congenital Hypothyroidism. We generally advise against it, but we can't force therapies. We don't consider it unethical for parents to consent to treatments for children.

LarryC wrote:

That's why I drew a line in the sand with Down's Syndrome. There is no germline modification going on with it. You're just fixing the doubled up chromosome. If it could be fixed, then I am absolutely completely okay with parents choosing to have it fixed. Not abortion. You just choose to not have it. That's it.

We're not saying people who have it should be mistreated. This isn't saying they're lesser people. This is just something parents can choose for their kids, just like treatments for newborns. We could withhold thyroid supplementation for people with Congenital Hypothyroidism. We generally advise against it, but we can't force therapies. We don't consider it unethical for parents to consent to treatments for children.

That’s the thing though. My ex husband would’ve been okay with “fixing” my sons. As a member of the spectrum myself, I am not okay with that at all. When you “fix” that, you make them different people. You’ve effectively erased who they are and replaced them with someone else.

Really? The genetic code is exactly the same and you're not changing anything in your upbringing. Are you implying that an error in chromosomal splitting is an essential trait in a person's character and being? If we could correct the trisomy post pregnancy, is that better? Would you do that? I would. Why would you want me not to be able to correct something I don't want in myself?

*Unnecessary comment*

Well it is a debate forum...

*relevant comment has been removed*

*mod*

Looks fine to me. It's a deeply challenging and personal topic, I think folks are doing ok navigating it.

Eleima wrote:

That’s the thing though. My ex husband would’ve been okay with “fixing” my sons. As a member of the spectrum myself, I am not okay with that at all. When you “fix” that, you make them different people. You’ve effectively erased who they are and replaced them with someone else.

Are you opposed to the idea of being able to alter that characteristic, or the idea of necessarily altering that characteristic?

There is the idea of personhood and to what extent parents ought to have a say in it. For better or worse, parents have surprisingly large inputs into how you turn out as an adult, and that goes beyond their contribution to your gene code and what they choose to edit out or in. Even right now, a father can choose to have his wife select sperm from a gene bank to not pass on possibly terrible diseases, and a mother could also choose the same thing, selecting from egg donors. We can already do this now, and we don't make it illegal to choose to do this.

I have genetic flaws I would highly consider not passing on. I have near-sightedness and gout. I would rather not pass those on, if I could choose that. I would consider this a germline improvement. It's not like we don't fix these problems today, we just do it with medications and spectacles, and both of those treatments have shortcomings. I don't see what's so superior or inferior about choosing genetic treatment over buying glasses for a lifetime. I mean, I do think not having near-sightedness is genetically preferable, but it doesn't make people better morally or better in any other way than in seeing things well.

I'm hoping that this particular part at least is without contest - things we choose to fix now, should not be debatable. Cancer cures, corrections for hormone problems (congenital hypothyroidism), eyesight corrections, sickle cell problems - all above table, no? Anything we choose to correct right now and not deem illegal, those are all kosher, right?

Using myself as an example, here are two potential scenarios.

I have HypoKPP (basically on occasion my blood potassium level gets low which leads to temporary paralysis, and there is a longer term degenerative effect it seems). If my parents had the option to have edited that out it certainly would be my preference. While it has shaped aspects of my behavior, on the whole it is a net negative. However, I can see in a universe where that option had been available that had my Genes not been edited that it could tie into class based discrimination, as in the perception that my family was too poor to afford the editing, or some kind of luddites.

I also think cilantro tastes like soap. Had that been edited out I might appreciate different brands of salsa. However I can seen that other universe where if that had not been edited out that there would be a stigma of why did my parents decide to leave me in the genetic minority, i.e. what is "normal" and how much deviation from that "normal" is allowed

LarryC wrote:

Really? The genetic code is exactly the same and you're not changing anything in your upbringing. Are you implying that an error in chromosomal splitting is an essential trait in a person's character and being? If we could correct the trisomy post pregnancy, is that better? Would you do that? I would. Why would you want me not to be able to correct something I don't want in myself?

It really feels like you're being deliberately obtuse. I'm giving you specific examples where people have spoken out against gene editing, because it would erase them. I'm talking about my experience as a MD on the spectrum and parent to boys on the spectrum. I've spoken about people coming forward to various documentaries, folks with dwarfism, with Down's. Once again (because I don't seem to be getting through), I'm not saying you shouldn't cure sickle cell. But when you're saying you wan't to "get rid of something you wouldn't want in yourself", that speaks to profound, deep, staggering ableism.
But fine, if you won't take my word for it, hear it from someone else:
Please Don't Edit Me Out (The Washington Post)

I am who I am because I have dwarfism. Dwarfs share a rich culture, as do most disability groups. We have traditions, common language and histories rich in charismatic ancestors. I can honestly say that I may not have been able to work in the White House doing diversity recruitment for President Barack Obama had I not been born a little person. It allowed me to understand discrimination, isolation and society’s lowered expectations.

While non-disabled people fear a prenatal diagnosis of disability, disabled people think of the possibilities. How rich would our society be if we all did this? What if that child with osteogenesis imperfecta becomes a world-changing architect because they think differently about how the world is set up due to their disability?

I am who I am because I'm on the spectrum. Make no mistake: this isn't about "feelings", it's about the right to exist.

A page ago you called me an intellectually dishonest eugenicist for expressing a desire to develop the technology to do the equivalent of curing sickle cell, so its not really right so say you are/were clear on that.

thrawn82 wrote:

A page ago you called me an intellectually dishonest eugenicist for expressing a desire to develop the technology to do the equivalent of curing sickle cell, so its not really right so say you are/were clear on that.

I'm not exactly sure what you're talking about, but I'll try and refresh your memory. For the record, I called your reasoning a false equivalence which is a dishonest tactic. I did not call you an "intellectually dishonest eugenicist". Don't bow out to come back and twist my words.
First here:

Eleima wrote:

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

Then here:

Eleima wrote:
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.

And...

Eleima wrote:

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”.

Then...

Eleima wrote:

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.

As well as...

Eleima wrote:

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.
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.

And finally...

Eleima wrote:

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.

It's only one page back, seriously. I'd even bolded it, ffs.

But don’t all diseases/experiences shape who we are, including painful conditions like sickle cell or terrible diseases like cancer? I’m just not sure where to draw the line. There have been some beautiful pieces of literature and art that were born out of the pain of terminal illnesses and tragic conditions. Living with transposed cardiac great vessels would drastically change a persons existence but we edit that existence out of being with surgery all of the time. I recently saw a patient with Ehlers-Danlos who has suffered mightily and I’m sure would have loved to have not dealt with the devastating cardiac and neurological sequel of that disease if they could have been prevented.

And I have friends with children on the spectrum (as is my son) some of whom are non-verbal and will likely never live independently. I know that they would have prevented it if they could. Instead they seek myriad quackish treatments like chelation and dietary restrictions. All in attempts to edit their current existence into something less painful.

I just think this is a terribly complicated issue. I don’t think those who want to prevent medical conditions are evil in intent. But I also see how those living with those conditions would feel marginalized if technology is able to erase future generations of people just like them.

Eleima wrote:
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.

I opened my comments mentioning my sister, and her de novo genetic condition which while much rarer is comparable to sickle cell in scope. I condemned the doctor for being irresponsible but tried to express that i didn't want to abandon the technology itself because it because of this family experience, and that's how you came back at me.

Thrawn, you're not engaging in good faith. Using a logical fallacy happens every now and then, we've all done it. You're only intellectually dishonest, if you keep doing it repeatedly and refuse to back down once it's been pointed out. Which you now seem to be doing. You're completely missing my point, and I don't see how we can have a civil discussion if you're too busy defending a mistake you made and not engaging in the discussion. Not to mention that you'd bowed out, only to come back to attack me.
I stand by every single word I wrote. I'm cautioning against the erasure of people that don't fit the "norm", and will continue to do so.

Edit: Since you've edited your post. Once again, you can't compare sickle cell - which is a known hereditary genetic disease which can be screened for - with a de novo mutation. It's not even remotely the same thing.

It certainly felt like you are accusing me of advocating eugenics with "whataboutism," which frankly hurts. I'm not advocating erasing anyone's identity, least of all yours, just expressing hope for a technology that shows the promise of providing relief based on the first and second hand experiences I've had with a particular genetic disorder.

It was de novo in my sister, not something carried by either of my parents. But now that she has it, it is heritable, and dominant. At least that is the understanding my sister has from her doctors, and it aligns with my own genetics experience.

thrawn82 wrote:

It certainly felt like you are accusing me of advocating eugenics with "whataboutism," which frankly hurts. I'm not advocating erasing anyone's identity, least of all yours, just expressing hope for a technology that shows the promise of providing relief based on the first and second hand experiences I've had with a particular genetic disorder.

Seriously. That's what this is about. Your feelings ?!?
Yeah, sorry dude, but nope. I'm out for now, it's bedtime.

Of course it's about my feelings. Its a passionate subject, wrapped up deeply with my family history, and the reasons I'm in the career I'm in, why I was happy spending 8 years doing micro arrays, and why I do oncology FISH now. My feelings are very much deeply wrapped up in every aspect of my study of genetics.

Clearly I've mixed some stuff up along the way, and argued in bad faith and made a fool of myself. I will examine what I've written here and the responses and try to do better in the future.

thrawn82 wrote:

It certainly felt like you are accusing me of advocating eugenics with "whataboutism," which frankly hurts.

(edit for clarity) For what it's worth, I don't think anyone who read your exchange with the other person thinks you are engaged in "whataboutism." You are talking about the lives of any possible children in your immediate family, which is pretty far from being an abstract thought experiment. That's not "whataboutism"

I also didn't see you make a false equivalence there.

Beuks33 wrote:

*Unnecessary comment*

Not really cool to edit out your comment after others have replied to it.

Thrawn, you do FISH testing? I just want to say thank you for your work, it is so crucial to treating cancer these days.

And agree, this is a very emotional issue and incredibly promising yet dangerous technology. I for one am excited to see where it leads.

*mod*

Arguments are being rehashed with more frustration and anger setting in. Best to take a break on this particular subject here unless there’s something new to add.

To take a break from the crispr conundrum, I mentioned this in slack last week but don't believe I brought it up here. I've mentioned this co-worker of mine before. She's very much into alternative medicine and every food trend that raises its head. She's paid thousands to learn "raw cooking" techniques, thinks every mental and physical condition can be linked directly to the food you eat, and that were it not for all the man-made chemicals in the world we'd all be healthy and happy. Anyway, she just happened to mention last week that she knew it was controversial but that she felt the flu shot was just a means of spreading the flu in the population. She caught me pretty flat footed on that one and I think I just stared at her for a moment, mumbled okay or something like that and went on my way. I really wanted to ask her who she thinks spreading the flu would benefit but typically her answer in this is hospitals and doctors. She's made the argument a thousand times before that doctors only want to make people sick so they can keep making money treating them. It doesn't help my argument against thinking like that when you have investment banks releasing reports asking if it's really profitable to try to cure diseases.

She's probably the sort that cannot be reasoned with. A conspiracy minded person only sees logic and reason as deepening the conspiracy. They cannot be convinced, for example, that the more people involved in a conspiracy, the far more likely it is to be leaked, and one involving the flu vaccine would have to extend to millions of people.

She might just be naive though, and spreading things she heard. This kind of person basically accepts anything told to them as true, on the spot, even if they might have later doubts. I can't help but feel that way sometimes, especially when something completely new pops up. I dont answer my questions with people, because we're essentially useless as information conveying objects, so I need to go and do research.

If she's that second type she may still be amenable to reasonable arguments, such as listening to this doctor at an Israeli company who's working on a Universal Flu Vaccine and is in promising human trials right now. https://www.carasantamaria.com/podca... If she's more the first type, she'll just be turned off a the hint of the authoritarian labcoat this doctor probably wears.

But of course as soon as those people get serious sick or break a bone or something, they go right to the doctor. Demonstrates how much they believe in their convictions.

They don't though, not necessarily, even with a warning story like Steve Jobs who could probably have been successfully treated and lived much longer.