>

Not sure about proper damages or SLO, but nowadays would seem unthinkable to not have some legal stuff in place to protect patients and the science or med orgs.  People get compensated for far far less, so seems like anyone would want, expect, and try to be comoensated.
and the practice of using patient biopsy tissue for research was relatively routine. 

Do you have any information regarding legal patient consent requriements in this matter? As far as I know, all of this happened without Lacks' consent.
EDIT: clarified legal requriements >

That was the controversy. I read the book on her and the it all happened without her consent nor knowledge. It seems valid to want compensation for that >

At the time, no one was getting consent. Shouldn’t everyone be compensated? Isn’t better medicine a compensation itself? >

But I think, or at least hope, we can all acknowledge that that was a bad practice. Does the fact that an organization wronged someone within the confines of the law necessitate that they should never have to make amends? The topic of reparations today is a controversial one, but I think if we simplified it by looking at immediately after slavery was abolished, I think most people would agree to a system where the slave owners paid reparations for their ill gotten gains under slavery. Granted, we are about one human lifetime out from Henrietta's death, but it is still a shorter period of time than slavery and her descendents could undeniably have benefited from her being fairly compensated. The Constitution specifies you can't go to jail for an act that became illegal after you did it, but you need not break the law to owe damages in civil court. >

I think the opposition here is, where do we draw the line? If you just open the floodgates for descendants of people who didn't consent to testing before 'x' date, it'll be a madhouse of people clamoring for their reparations money. Whereas if we don't set that precedent, some (dead) people won't get compensation, but neither does anyone else, whose claim may or may not be legitimate. And then we can put the whole thing behind us and move forward together, having learned from our ancestor's mistakes. >

To me, this argument boils down to "so much wealth was stolen by medical researchers, how could you possibly expect them to pay it back?" I get acknowledging historical context is important, but this was the 1950s, we knew that samples for medical testing had monetary value, and we knew that taking something of value from someone without permission, or even compensation is wrong. This isn't a case of collective morals not being as evolved as they are today, or of society not having the perspective to see the wrong in this situation, it is a case of businesspeople exploiting a new and unregulated commodity. >


so much wealth was stolen by medical researchers, how could you possibly expect them to pay it back?

But like... yes?
I mean if it's simply not possible for it all to be paid back, then it can't be paid back can it? 
What are we going to do? Shut down all future medical research and divert that money into the decendants of those unethically researched on? Clearly this would be a worse outcome for society.
Or just pay off the loudest voices by diverting some of the money for future medical research? Again this isn't great for society, and is inequitable in that those who can afford a loud voice get the money.
There's little value in paying off the decendants. They've no financially worse off for the previous research, it's not like they can show a financial loss. The ownership of the material at the time wasn't established as belonging to her estate either. 
From a utilitarian perspective this is a total non-starter in terms of ethics. >

We are talking about companies who sell life saving medication because of this research, and to some extent probably also the US government. The thing that really bothers me about their claim is they did work on producing marketable treatments, so descendents clearly aren't entitled to all of the money from that treatment, so they have by necessity made an amount of money proportional to the value of the research sample. A court could just say 'Foe X number of years this estate gets Y percent of the profits from all products derived from the research sample provided.They have enough money to pay a meaningful sum to everyone effected, if not the true value of their contribution.
Of course the descendents have seen a financial loss. A company stole the most valuable thing Henrietta owned at a time when she was paying huge medical bills. She probably didn't have any assets to leave to her family when she passed. Had she been fairly compensated, they would. >

I do understand the angle, however they didn't actually steal it. Stealing means taking something illegally.
Taking biopsies and examining them to try and help diagnose and treat cancer is absolutely common practice and happens all the time. There were issues of specific consent for the procedure done to the patient, however getting consent like this wasn't commonly done in those days like it is now and taking the biopsy followed the law and the customs of the time. For sure that wouldn't have passed muster today, but times change and you can't retrospectively punish people for new laws.
Once the biopsy was examined, it became medical waste. Now I'm pretty sure you don't have any consent involved as to the end use of what you flush down the toilet every day, that's your waste but it ceases to be your property once it's flushed. This is very much the same deal, it was considered waste and therefore no longer the property of the patient. Again in current times if research was to be done on your medical waste you'd be asked to consent, but that wasn't the case then. In current times sewage solids are sold and often used as fertiliser, by analogy you'd be claiming part of the profit of all the tomatos sold just because there was some of your poop in there originally.
Finally what was done was de jure not illegal, it was challenged in court, and the court decided in their outcome that this wasn't theft because there was no loss of property (as it was waste). Therefore it's been specifically decided this wasn't stealing.
Now don't get me wrong here, I think there are some ethical issues involved in this case, and fortunately these have all been thrashed out in modern medical research. However there's really little grounds in this case to claim that the decendants of the patient can claim some of the profits because there's been some profit made from using waste material. >


My perspective is that Henrietta Lacks didn’t do anything to further the research, at least not more than anyone else who has ever had their tissue used in research. The only difference is that her tissue happens to proliferate.

Well that seems to be a pretty big difference, wouldn't you agree? One persons biopsy may get used in one experiment. HeLa cells have been used in millions of experiments, including in the development of modern drugs which have produced billions in revenue.
Now I'm not saying her relatives are obligated to financial compensation, but given the significance of her contribution to the world, I thought we would've given them some good will money by this point.
Sure, Henrietta didn't do anything special to have these unique cells. But that doesn't mean she shouldn't ever be celebrated or rewarded for it. >

Good points. 
It’s true that one person’s biopsy could be used in one experiment and another person’s biopsy used in many experiments. However the person that produced the biopsy doesn’t influence whether the biopsy is useful or not. It is just luck. It was lock that Henrietta Lack’s biopsy was so successful. I would rather have everyone get modest compensation rather than one person get a giant windfall due to luck. Having one person earn a windfall makes it seem like a lottery. We as a society have decided not to give people compensation for their biopsies in order to discourage people getting unnecessary biopsies for money. That makes a lot of sense to me. Therefore the current system seems reasonable.
I think her contribution should be acknowledged, but that’s different than saying celebrated. When you celebrate someone, you applaud their actions. She didn’t actually do anything. There’s nothing to say that she’s a particularly good or bad person. She’s just a person. I think telling her story and acknowledging her as reasonable, but to celebrate her doesn’t make sense to me since she didn’t do anything to celebrate.  
As for giving her relatives some goodwill compensation, I agree with that and that is already been done. However they keep asking and actually demanding more. It would be nice if we could just settle this, but they take a pay out and then keep complaining that they deserve more. That seems unseemly. >

A question to ask is, should consent be required? Patients now give informed consent and it wasn't required before. Okay, but should it have been? If the answer is yes, doesn't that suggest that some compensation might be in order? There might not be a legal requirement here, but might not there be an ethical one? >

HeLa cells were a medical revolution. There isnt a single lab today that doesn't have her cells in them. I have worked with them myself many times in my internships. Prior to her cells, no body was able to keep cells alive and proliferating outside of the human body. Her cells changed everything and lead to many medical breakthroughs. 
Over 100k papers have been written using her cells. Her cells helped make vaccines and are directly responsible for the development of the polio vaccine. They were instrumental in understanding the mechanism of viruses. They have greatly contributed to the understanding of cancer. They are the reason invitro fertilization exists.
People are not mad that a tissue sample was taken without consent- it was so small it really doesn't matter. What people are upset over is the fact that people were winning nobel prizes and getting insane amounts of funding due to HeLa cells while her family lived in absolute poverty. They could not afford any kind of healthcare, some could barely even read. They never knew anything about HeLa cells until a journalist interviewed them about it. 
This is a major case of the medical community exploiting black people, which is a very real problem with a large history attached. >

This experiment had been done with hundreds of other patients prior to Henrietta Lacks. Samples were taken from Black people and white people, poor people and rich people. It just so happened that the experiment that worked came from a poor black woman.
The question I ask you is whether you think that the patient or their family would’ve gotten money if the samples had come from a rich white person?
We can answer this. I don’t know of any other patient or family who was rewarded financially because biopsy tissue taken from them happened to result in a successful experiment that resulted in a profitable product. In fact, standard practice is that people are not reimbursed at all, regardless of how helpful their samples have been.
If you are going to claim that this is an example of the healthcare system exploding Black people, one thing you have to demonstrate is unequal treatment of black and white patients in this scenario. However I don’t see any evidence of unequal treatment. Neither Black nor White patients were consented and I don’t see any reason to believe that a white patient would be compensated for their biopsy but I black patient would not. Do you have anything to support the idea that there was discrimination that you claim? >

Her cells were not modified with an experiment. I dont know where you got that idea from. Her cells remain the fastest growing and hardiest cells you can use in lab today, and people still dont know exactly why. 
It's also important to note that the family was asked to provide DNA samples and undergo a few tests to figure out what made HeLa cells so special, and they were not told why. It took until a medical journalist interviewed them for them to figure out what was going on. HeLa cells were and continue to be a medical revolution, and it is unacceptable that the family is unable to access any kind of medicine due to systemic poverty. >

As somebody who has done a lot of research with those cells, I can explain what I mean. The cells themselves were not modified Intentionally, however they developed countless mutations and now look nothing like human cells. How do I know? Because I’ve used them. I’ve kind of the chromosomes. I’ve grown them next to normal human tissue and they behave nothing like human tissue. That’s because they are no longer human tissue. With chromosome so different, it’s essentially like a new species.
I cannot speak to the DNA samples the rest of the family provided later. I’m just trying to stick to the point whether there was any discrimination or damage or harm that came to Henrietta lacks that she should be compensated for. 
I cannot find any evidence of significant harm and therefore I cannot see a reason that she or her family should be compensated. >


However in 1951, medical consents for research simply were not common and the practice of using patient biopsy tissue for research was relatively routine.

How is this an argument? It is not currently 1951. Are you implying that if a wrong was done during a time when it wasn't seen as a wrong by those who did it, that it should not be righted?

Henrietta Lacks didn’t do anything to further the research, at least not more than anyone else who has ever had their tissue used in research. The only difference is that her tissue happens to proliferate.

Well, there you have it. She proliferates. "But that wasn't her conscious doing, it's just what her body did". So? There are entire industries based on what people's bodies do from modelling to sports to freakshows.

The use of her tissue also didn’t significantly negatively impact her since she died shortly there after nor did it affect her legacy in such a way that she should be compensated.

No one is claiming otherwise to my knowledge. Compensation need not be borne of suffering endured, it can be borne of benefit reaped. And to my limited knowledge HeLa cells have benefited the medical industry greatly. >

If it were possible to write the wrong that occurred in 1951, I’m all for it. The Wrong that occurred was that the patient wasn’t informed and consent wasn’t obtained. Fixing that is difficult since Ms Lacks has since died. I don’t see how giving money to her relatives actually fixes the problem. I think acknowledging it and apologizing is a good start and that has been done. However the family keeps making financial demands. I just don’t see how continually paying the money actually fixes the problem that occurred.
You say that compensation should be based on benefit that is reaped. Do you think that people who donate samples to science should not be compensated unless that particular sample happens by sheer chance to be useful to science? If two people donated the same sound, how is it more fair to reward one but not the other based on nothing more than sheer chance? If we are rewarding people for the utility of the samples, shouldn’t that be spread evenly spaced on intent rather than random outcome? >


If it were possible to write the wrong that occurred in 1951, I’m all for it. The Wrong that occurred was that the patient wasn’t informed and consent wasn’t obtained. Fixing that is difficult since Ms Lacks has since died.

Au contraire. The wrong is ongoing. The wrong being that her cells are used without consent or compensation. Every day that passes weighs on Anubis' scales. While, I agree, consent is a ship that has sailed, compensation is not.

You say that compensation should be based on benefit that is reaped. Do you think that people who donate samples to science should not be compensated unless that particular sample happens by sheer chance to be useful to science?

Not at all. I said

Compensation need not be borne of suffering endured, it can be borne of benefit reaped.

I never said that if no benefit is reaped that no compensation is in order, nor did I say that suffering shouldn't be compensated. >

I had to guess what you might be saying because you actually haven’t said anything concrete. Why don’t you spell out what you think is an equitable solution. >


I had to guess what you might be saying because you actually haven’t said anything concrete.

No you didn't. You never have to make up something about someone else's argument. That's never helpful. As for equitable, I can hardly say the amount of compensation that should be given, because I am not well enough versed in precedent, law, etc. What I can say is that compensation would not be amiss and that every day that passes without any is further wrong being done. >

Say we have a situation where stealing is accidentally legal for 24 hours. You get robed during this time. When the mistake in the law is corrected, should you get your stuff back? >

This feels more like someone taking something out of your trash after you've put it on the curb, and profiting off of it. You didn't accidentally throw out your trash. And you had no expectation of keeping what you threw out. >

In this analogy, a doctor removing something from your body for the purpose of a medical test is the same as you throwing it out? >

After the test is done - yes. >

So for example, if you have a biopsy at a hospital and someone comes along and offers millions of pounds for the sample, it's the hospital that has the right to sell or not sell and you aren't entilted to any of the money?
So I can see the trash example working because we've agreed that's how trash works, people are taught to put their trash in this place to communicate they want to throw it out. But I don't know why you'd assume the same about a medical test, it's not as common a situation and I'm not aware where that's communicated explitily. 
I'd also argue that there's a big difference between choosing to throw something out, and taking the advice of a professional doctor to have a test done. There's fear as a factor for one, and professional authority as another. I could for example see a situation where a doctor exploits this power imbalance. And that's not even getting into the removal of body parts when a paitent can't consent. >

It’s also a bit more complicated than that. There are laws in place strictly limiting what human tissue and blood products can be sold in what context. The biopsy itself cannot be sold therefore had no market place value. The scenario where somebody offers millions of pounds for it isn’t applicable since I can’t be sold.
Furthermore, the people that attend the sample and performed experiment did not make the money. They made a cell line that was freely given to other researchers and widely distributed. Some people that used it to make money, however that was pretty far down the road.
A better analogy would be if somebody made open source code that was widely distributed without any license and somebody use that code to create a very different product and that new product was profitable. However the product did not contain any of the open source code but its development was dependent on that code. >

I met 2 of her grandsons and had a very long discussion about it with them. They seemed pretty legit and they didn't even seem too concerned about compensation. They just wanted to get her story out. >

That is very interesting that you happened to meet her grandsons. I’m not sure which of her descendants is seeking compensation, however if you Google “Henrietta lacks family seek compensation” you can see that they’ve launched multiple lawsuits against companies and universities and hospitals so if somebody is certainly working very hard to get money out of this. >

In 2021 the pharmaceutical industry made $550,000,000,000
and health insurance companies made $17,000,000,000
Something tells me we're pointing the finger in the wrong direction when it comes to "exploiting a healthcare system." >

That’s revenue not profit. It excludes R&D expenses and COGS so it’s a bit misleading. But yeah they make a lot of cash
Edit excludes >

fair point. Nevertheless, the point I was hoping to make is that "extortion" shouldn't really be levied against somebody who doesn't have power over the medical community and is instead making an appeal to the justice system to arbitrate their case. The term extortion should apply to organizations that have power to set prices (economic cartel) and take more than necessary from the medical community and patients themselves. >

In the land of the lawsuit I don't think that's true. There is a reason that big companies often settle claims which might make them look bad rather than litigate them. Even if the case would ultimately be found in their favour, they often decide it is better to avoid a lengthy court case because of the consequences for PR (one news story when they pay out, instead of a series over a year).
I think would could credibly argue that a case that has a political element is more prone to be extortionate, especially in a country where judges are elected. I'm not saying that's what happening here, I just think it's wrong to dismiss the whole concept of an extortionate lawsuit. >

Even so- settle for what? If they gave them 10 million dollars that's probably just some pharmaceutical exec's Memorial Day bonus. 
I guess we should clarify terms: I'm making the argument that this isn't extortion in a pragmatic sense, no matter how you cut it. I'm not trying to argue a case that this is or isn't legally extortion or an "extortionate lawsuit" because frankly my experience in civil law amounts to arguing with 12 year olds over what happens when you land on Free Parking. >

I'm also not trying to argue that this is or isn't extortion. I just think you were overzealous in the post I responded to when you suggested that it COULDN'T be, because they are making an appeal to the justice system. I just want to say that the justice system can be, has been, and will be used to conduct extortion.
There are some protections to make it not happen (vexacious litigation and all that), but I don't think they are that strong.
That was all. >

It's a fair point. I disagree but I can't articulate a rebuttal. >

I'm not really sure what my position is on this issue. But maybe if I talk it out we can come to learn more about what to think about this really sticky ethical situation? 
First, do you think there's something a little bit, I don't know, icky about this whole situation? The fact that we can identify a specific person whose cells somehow can be used over and over again for research purposes? And the fact that it came from such a deep, personal tragedy? 
How would you feel if it was your grandmother, or your aunt, whose cells were being used over and over again in experiments? As you say, without compensation or privacy protections? >

I would feel great that her death was able to help so many people. >

Research practices from 1951 are irrelevant.
​
All research performed now should be held to the current standard of ethics: the research that is currently performed is not being performed in 1951. 
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And it is irrelevant that the cells have undergone further mutations: the origin of these cells is what is key here. And you don't get to decide how removed from a body tissue has to be to be used further without consent. The only person who does matter is the person from whom the tissue was taken. They currently get to decide what their tissue is used for, and if this wasn't obtained previously then that is a significant ethical issue. 
​
As to a legal claim: if the cells were collected according to the legal rules at the time, then it is up to a court to decide if that providence is sufficient. 
​
I note in another comment that you consent people for trials, and say that it's no big deal. I consent people for clinical research and perform wet lab work with patient samples.  It's a bit shocking to hear you say that its not a big deal and that you are not sure that it makes much of a difference. It's pretty damn important, especially with high-throughput sequencing that future research my sequence the genome of any cells taken and may lead to health or insurance consequences.
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In my experience it makes a huge difference, and is one of the articles of consent that gets the most discussion and (when optional) the most refusals - particularly if time is not spent explaining. >

It’s an interesting point that current research should be held to current ethical standards. In that case, what do you think we should do with these HeLa cells? We can no longer get consent from Henrietta Lacks.  Should we all just agree to stop using them? The impact would be that we could not replicate and confirm or advance on previously done science using HeLa cells since they are so different than any other type of cell. It would set medical science back significantly.
The other issue is whether financial remediation to the surviving family members actually addresses the ethical issues. It is so hard to put a dollar value on an ethical issue, especially when you are paying that money to people who were not even alive at the time.
In terms of consent, I tried to clarify that comment. Of course consent is important. However in some cases it’s much more important than others. In cases where harm might come to the person, it is absolutely critical. In cases where a sample might be used in a research project, it is still important but less so. The point I was trying to make is if you actually listen to somebody obtain consent for research studies, the consent is typically not that informative especially when a person does not have a research background. I still think it’s important to do, however the real world utility of consent is limited since consents often contain a little useful information and it is difficult for people outside the medical field to even understand. >

I’m not going to argue the law here, just the ethics. 
Ethically, this was a theft.  
Something very valuable was taken from this woman without her knowledge, her consent or compensation.
The value of this thing has only increased over time.  People all over are benefiting from it, but additionally, people are getting rich from it.  
It is unethical to keep profiting from a stolen item, when you have the ability to pay for it.  
Absent any prior contract (because of the theft) the Lacks family should get royalties for the continued use of the cell line.  Maybe not in perpetuity, but for some set of time (maybe as long as things take to go into the public domain).  They can be so small as to be a rounding error to the companies using them.  It need not unduly burden anyone. 
It doesn’t matter that Henrietta is dead.  Descendants get royalties from the work/wealth of their ancestors all the time.  A reasonable person can assume that if we were able to contact Henrietta’s ghost and offer payment to her grandchildren for her contributions to medical science (and as reparations for the theft) she’d enthusiastically agree. 
It doesn’t matter if the descendants are greedy.  We generally don’t decide if people pass a morality test before offering payment for services or products they provided. (Or their ancestors provided, as per general inheritance customs) >

I think there is a significant difference between ethics and legality.
I think ethically it was wrong to use her tissue without consent. How are you compensate someone for an ethical violation is pretty complicated.
How are you are talking about theft which is a legal issue. You also say that something very valuable was taken. Value of an object is based off of how much it can be sold for. At the time and even now, we are legally forbidden from buying or selling human tissue. Since it cannot be bought and sold, it doesn’t have value. Furthermore, the value of the biopsy at the time it was taken even if it could be bought or sold would actually be quite low. It is extraordinarily easy to obtain cancer tissue since it is routinely removed from cancer patients.
Only by work from cutting edge scientists at the time was this low value human tissue turned into a cell line that was valuable. That said, at the time of its creation it still wasn’t valuable. The cell line was distributed freely and it still is distributed freely. People use this free resource to develop products that then began to be valuable. However the cell line itself or is actually freely available.
A better analogy would be if somebody threw away an old computer. Someone else found the computer in the trash and did not ask to take it but used it to write  an open source computer program that was very useful but also freely distributed. People use the program to help develop other projects. Those other projects became profitable. Does the person who threw away the old computer deserve to profit from it?
This is not a perfect analogy since the cells were removed from a persons body and not just some computer. However that cancer tissue was going to be discarded regardless. >

Without a doubt, her relatives are seeking compensation for selfish reasons. Someone supposedly stole from your dead relative so you want compensation because you didn't get what they we're supposed owed? Doesn't sound like they have Henrietta's wishes in mind. They just want free cash because haven't been in an accident with an 18 wheeler, and they can't scum money from that. I mean, gee whiz! Imagine having so little going on in your life that you want to get compensation for a tumor extraction preformed in 1951. Move on already.. >

Regardless of whether they personally deserve monetary compensation, there's another factor at play here. If the family of the deceased does not pursue those who wrong them then it sets a precedent of there being no repercussions.
This is a civil issue, meaning no third party will advocate for the deceased in their stead like would occur in a criminal case. As such, unless the family does then there's nothing stopping organizations from breaking agreements with the ceased (or doing things without consent).