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Majority of Smithsonian’s Human Brain Specimens Was ‘Gathered Without Consent’ (artnews.com)
33 points by giuliomagnifico on Aug 16, 2023 | hide | past | favorite | 67 comments


At the moment your brain is available to be collected, there can usually be no consent.


Actually, unless I donate my organs before I die explicitly, you can't do that.

At most, my descendants can donate me, if they choose to. You can't take an organ just because you feel like it, even for science.


>Actually, unless I donate my organs before I die explicitly, you can't do that

Historically though, they very much could and did. In fact, until quite recently they bought cadavers for medical schools (for anatomy and such) quite freely.

And on some jurisdictions, probably even today.


> In fact, until quite recently they bought cadavers for medical schools (for anatomy and such) quite freely.

And often quite illegally, despite the practice being common.


I'm in biotech. My graduate education involved a fair bit of volunteer work with , believe it or not, human brains.

We'd take these brains out to schools and museums for public education. There were a lot of brains in the educational brain bank at the school. There were many different sections and cuttings of the brains, the dura mater, the spinal cords, eyes, etc. A great educational experience for anyone that wanted to learn more about the human body and their nervous system in general.

All the brains were fixed, and were the classic tired bubblegum color. It's that firm density you're thinking of and the texture is a bit cheese-like. They abrade easier than you think. The weight is always more than you think it's going to be.

Putting a real human brain into the hands of a child is a very magical experience. Again, it's heavier than you think, so they always seem to just not drop them, but know it's a very special thing so they all try their best to hold it up. And after that initial shock, the child's eyes just explode. You can really see their fascination, amazement, and reverence all at once. The 'adults' do the exact same thing, by and by.

It's a strange thing to transport the brains too. You have to go and get them out of storage (which is also a bit weird; you store them all over the place in the labs in very obvious locations and in very dull plastic buckets. This is so weirdos can't find them. There are no glass jars all up on a wall). It's typically a brain to a bucket, maybe some other parts. Then you just take them to your car, put them all in the trunk/back, and drive off to the location. You bring a bunch of gloves and coats, of course. I was always so worried that I'd be pulled over and the cop would want to look in all the buckets in the back, open them and see a ton of brains, and I'd be in a lot of shit. You don't need a permit on you to do this, you just move them like any old end table.

Eventually, the brains would get old and worn out. We'd dutifully collect every bit and ablated speck for disposal. I wasn't part of that part of the process, but I was told that all the bits were buried/cremated/disposed-of in the way that the previous owner or their family desired.

The donation process and the previous 'owner' of the brains is kept very secure. We never had any idea of the name/sex/race/ethnicity/gender/nationality/etc of the brains. From what I knew, all these were donated specifically for public education.

Happy to answer any questions yall might have on this!


Did you refrigerate them? Did the children hold them directly or in a container?


Stored in fix, so refrigeration isn't strictly necessary, but out of convention, anything in fix is in a fridge of some sort.

Kids of a certain age get to hold them directly in gloved hands. The place has to have some ventilation, as again, the fixative doesn't smell the best and is also bad for the skin.

Thanks for the questions!


Thanks for the answers!

What is 'fix'? Chemical preservative?


Primarily formaldehyde, but there are a few other things in the modern products that I can't remember. It goes into tissues and creates networks that essentially freeze membranes in place. It kills nearly everything and preserves large anatomical structure.


World wide, or which countries are you referring to?



Turkey, at least. Wife is an M.D. Just checked with her. She said “Nope, you can’t”.


"Abby someone. Abby Normal." https://youtu.be/C9Pw0xX4DXI


we seem really intent as a species on manufacturing outrage at every possible opportunity. what’s the endgame?


Outrage accept when it comes to actual things that kill people, like wars. We are all about getting lied to into wars, accepting hundreds of thousands of deaths, not punishing those who got us into wars, then promoting them and letting them start more wars. Where is the outrage for that?


The “outrage” in this article came from the Washington Post. We are told what is outraging others and what should be outraging us by unreliable sources with a specific agenda to push some narratives and not others.


Good point. Get the masses rowled up over culture wars while ignoring the important stuff.


I didn't find this article or the Washington Post article outrageous and I don't think they were intended to cause outrage. I think it's an interesting story and interesting history, I agree that it was wrong for people to harvest these brains 100 years ago, and I think the museum is generally doing the right thing today. I came to these conclusions without feeling any sense of anger or outrage, and I don't think a story needs to provoke those emotions to be considered newsworthy.


Watching the world burn down around you while you contemplate how, for one brief, glorious moment, you garnered a lot of clicks. That's the life.


This is our ascendant religion, and it’s important to protect it from blasphemy.


Solve the issue? But that's the thing, it's outrage, but it's also unactionable; people generally are powerless to change things.


Clicks = money. It’s not always a grand scheme, only sometimes.


"Consent" is a loaded word. I'm not sure the family/estate of a person can consent on behalf of the deceased.


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The rules haven't changed. They are:

"With respect to the content or other materials you upload through the Site or share with other users or recipients (collectively, “User Content”), you represent and warrant that you own all right, title and interest in and to such User Content, including, without limitation, all copyrights and rights of publicity contained therein. By uploading any User Content you hereby grant and will grant Y Combinator and its affiliated companies a nonexclusive, worldwide, royalty free, fully paid up, transferable, sublicensable, perpetual, irrevocable license to copy, display, upload, perform, distribute, store, modify and otherwise use your User Content for any Y Combinator-related purpose in any form, medium or technology now known or later developed."


I am references the rules of society, and despite whatever legal nonsense HN wants to say they can do, the fact remains both California and the entire EU has the right to be forgotten and the right to erasure as a matter of law.

Hacker News is not entitled to break the law. Hacker News is not entitled to violate the data protection and privacy rights of its users.


You get to dictate what the rules of the entire society are? I am part of "society". I earnestly believe that once you publish something on the internet, it should be there forever (or for as long as that particular medium exists). That's the internet I grew up on. If you went to a newsgroup, or later a forum, whatever you posted there became "society's" and no longer belongs just to you.


[flagged]


Specifically what information does the CCPA or the GPDR require HN to delete?

This isn't a broad "everything" law but rather relates to very specific information.


[dead]


The only way that comments you submit have personal information is if you include it. If you do so and want specific comments edited or deleted, I have complete faith the staff at HN will assist with that.

The rules, which you seem to think don't apply to you, for HN include:

"You acknowledge and agree that any questions, comments, suggestions, ideas, feedback or other information about the Site (“Submissions”) provided by you to Y Combinator are non-confidential and Y Combinator will be entitled to the unrestricted use and dissemination of these Submissions for any purpose, without acknowledgment or compensation to you."


Arbitrary forum comments do not contain information linking the comment to a real person which is what the CCPA and GDPR require in order for action to be taken.


You don't have a right to dictate what other people can remember about you.


I have heard nothing about the ai training, would you kindly link a source? That’s shocking if true.


That would also explain why the HN BigQuery hasn't been updated for a while (as I read in another thread)


i mean, they're dead. who cares.

now if the Smithsonian killed them for their brains...


Their family and descendants, to begin with.

And, when the tech advances and we can start to understand the brain better and start to get information from it regardless of its state, Its owner will care.

Ask the same question about AI training. "We're just scraping what's available on the internet, who cares?"

This is an extremely dangerous stance.


> And, when the tech advances and we can start to understand the brain better and start to get information from it regardless of its state, Its owner will care.

That’s never happening. But if it did—-mind reading of hundred year old dead brains—-what an incredible source of historical information they would have.


my initial reaction too, but I guess what they actually meant is that learning from the dead brains will be one of the factors that allow us to develop the functionality of reading the minds of the living.


Yes, it's a future looking comment. We should take lessons from today and prevent future problems around it.


And, when the tech advances and we can start to understand the brain better and start to get information from it regardless of its state, Its owner will care.

So you're saying there's a chance it's not too late to ask for their consent?


No, I mean, it's not too early to ask for consent before they die. We should start doing it.


List concrete dangers.


I know you don't care, but making people feel bad on purpose is bad.


We have no way to control how someone feels. As such we have no obligation to change how we act because someone says it will make them feel bad.


Why do you think the Smithsonian is doing this to make people feel bad? !


I don't think making people feel bad was the primary purpose, but I do think the people who collected these brains knew the families of the dead wouldn't like it, and did it anyway because they didn't care. That's what I mean by "on purpose".

I'm also referring to the people who did this 100 years ago. I don't have much of a problem with the Smithsonian of today based on the information in the article.


The problem with this is that anyone (or their relatives) can dislike anything. I don't like pesto, so I don't think anyone else should eat it because that would make me feel bad...


We have cultural values about respecting the dead and respecting bodily autonomy. If you asked me not to eat pesto at your relative's funeral, or not to use the corpse's hand to stir my pesto pot, I wouldn't, even though I know nobody would be harmed and it's just about your feelings.

If you asked me not to eat pesto on a normal day in your house, again I wouldn't, because that's a small sacrifice to make you feel better, and I value being a nice person. If you asked me not to do it in my own home when you aren't around, I would, because that crosses a boundary where doing what you ask is no longer worth sacrificing my own freedom.

In this particular case, the doctors and anthropologists want to research brains. They know that if they ask "may I harvest your relative's brain in order to prove its inferiority to the white race" the answer will be "no". Taking the brain anyway is therefore wrong - but does the utility of this research outweigh the moral issue of non-consent? No, it doesn't. There are some hypothetical scenarios where taking brains without consent would be worth it, maybe during a prion pandemic or something, but this is not one of them.

It's not like you'll never get consent - plenty of people are willing to happily donate their bodies for research, I probably would be if anyone asked.


-removed by author-


The concrete danger of taking brains without consent is that it upsets the family of the deceased, and the rights of bodily autonomy and respect for the deceased outweigh the rights of an unrelated person to have a specific body part in their collection.

A second danger in this particular case is that a brain may be used as evidence for a political program to restrict the rights of some population. It is totally legitimate to deny access to your body or your family's body if you don't want it to be used for this purpose. Scientists are human beings and not objective, and just calling something "research" does not magically make it objective. In this case, the research program was a political tool of no scientific value.

I'm sorry for my short reply before, I thought the article made both of these points very clear.


They aren't making people feel bad on purpose. Their purpose is to study the brains. It happens that to do that, a side effect is someone gets hurt feelings.


What?


GP said "this is extremely dangerous" and is being asked to give specific, concrete (as opposed to abstract or theoretical) examples of what those dangers might be.


I read the comment several times and "concrete" parsed as a noun each time. I think it was too early.


A couple of things coming into my mind:

    - Leaking of personal/corporate/state secrets.
    - Even more advanced, forced interrogation techniques.
    - Blackmailing (drug, extract, blackmail) on living persons.
This is bad enough, considering governments and three letter agencies will love to use this on high value targets.


Literally what are you talking about? This discussion is about donating the brains of deceased people.


Legally in some jurisdictions all corpses belong to the state.


When you're dead, your body is the property of your estate - your heirs. They may care.


False, though that’s a common belief. “There is a well-established general rule that when a human being dies, property in their body does not vest in anyone. Therefore, the simple answer to the headline question is that no one owns your body when you die (Williams v Williams (1882)). However, certain people are able to exercise rights over a body.

In Dobson v North Tyneside Health Authority [1996], the Court of Appeal concluded that personal representatives have a right to the custody and possession of the deceased’s body until its proper disposal.”

https://www.hcrlaw.com/blog/who-owns-your-body-after-you-die...


Right. (Probably in most states) nobody owns plain old dead bodies. However, Australian and English courts have held that people can own objects made with remains as long as skill was applied. Not sure if there's similar case law in the US. So there might be value in deciding who rightfully owns these specimens.

This discussion is a little tangential. The article is discussing the ethics, not legality, of how the samples were collected.


Well, OK, right to custody and possession. That still includes the right to control whether someone takes the brain out.


People who want to make a fuss, because they're incapable of making anything worthwhile like science or art...


Correct. This is why I recommend gathering body parts from Arlington cemetery.


You should go there to see all the people who's lives were cut short trying to actually do something. Not making pointless fusses about things for 100 years ago that affect no one alive today.


I can imagine the museum doing a sort of road show in every city, maybe like antiques roadshow but where the "descendants and cultural heirs" of various brains are brought together to receive the brains. Like a ribbon cutting ceremony but with a large jar.

While the Native American Graves Protection and Repatriation Act was passed in 1990, the law means the Smithsonian only has to inform Native American, Alaska Native, or Native Hawaiian communities about the remains in its collection. . . .

Out of “at least 268 brains,” the reporters also found that officials at the Museum of Natural History museum had repatriated only four of them to descendants or cultural heirs.

In April, Smithsonian Secretary Lonnie G. Bunch III issued a statement announcing the creation of a task force to address the disposition of the human remains held by the institution as well as apologizing for past unethical practices.


Wow just like everything else in museums.


[flagged]


How about you don't write on HN in the first place?


To be fair, any person who donates their brain to science must be out of their mind, and as such would not make a good specimen.


Certainly their mind would be out of them by the end of the process.

If my brain is useful for science (can't see how, but that's hardly my problem!), then have at it. Save the crematorium some gas, even.




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