Henrietta Lacks’s family reaches settlement in extracted cell lawsuit

[laughing dog]

Moreover, these firms are continuing to earn profits NOW.

 

[Loren Pechtel]

I find it wrong because why should her case be any different than all the others from back then? The proliferation of her cells wasn't known at the time.

Yes, the conduct was wrong--but it was the accepted norm. When the norm is wrong you change it, you don't punish those who followed it in the past.

No one is being punished, so what are you going on about?

Being made to pay money isn't punishment??

 

[Loren Pechtel]

I find it wrong because why should her case be any different than all the others from back then? The proliferation of her cells wasn't known at the time.

Yes, the conduct was wrong--but it was the accepted norm. When the norm is wrong you change it, you don't punish those who followed it in the past.

1. It was not unusual to not inform patients that tissues removed during a treatment might be used for research.

This is the key point to me.

Expecting compensation in a situation like this feels like an ex post facto thing.

2. That has changed now. We cannot go back in time and right wrongs but when we know something was wrong, we can admit to it and make whatever redress is possible and useful.

I look very skeptically on redress for things that the people involved would not have had reason to think were wrong.

3. Not all of those wrongs, and one might argue, not the most egregious wrongs were committed in 1951. HIPPA became law in 1996. The genome of Henrietta Lacks was published in 2013 and identified as hers, without seeking it receiving permission from any of her family. This is a violation not only of Mrs. Lacks, but also her family and descendants.
4. As loathe as you are to read links, I hope you will consider the following link which discusses some of the issues involving not only Mrs. Lacks’ tissues but the tissues from
other patios later used to develop tests and treatments.: https://www.science.org/content/article/what-does-historic-settlement-won-henrietta-lacks-s-family-mean-others#:~:text=In%20the%20Lacks%20case%2C%20the,the%20day%2C”%20Andrews%20says.

You are showing value. You are not showing what is the fundamental issue to me: that the conduct was considered normal.

Up thread there is an article from Nature magazine that I posted. I know you consider yourself to be somewhat informed about science so I hope you will recognize both Science and Nature as being extremely well regarded publications of scientific papers abd discussions relating to research and ethics, among other things.

The case of Mrs. Lacks is simply the most widely known example, and one that has gotten a lot of recent publicity.

Because the lawyers wanted money.

It genuinely is puzzling to me why anyone can object to a family receiving compensation for the violation of their rights and the rights of their family members, particularly when millions of dollars has been made from the contribution, however unwitting.

It is really hard not to believe that the objections have to do with the fact that this most famous/infamous case involved a poor black woman who died very young from her illness and whose contributions have saved countless lives. Why is that so disturbing?

Ex post facto.

It would be handled differently now but as you say we can't change the past.

I'm much more interested in doing right going forward than in trying to apply blame to the past.

 

[Toni]

I find it wrong because why should her case be any different than all the others from back then? The proliferation of her cells wasn't known at the time.

Yes, the conduct was wrong--but it was the accepted norm. When the norm is wrong you change it, you don't punish those who followed it in the past.

1. It was not unusual to not inform patients that tissues removed during a treatment might be used for research.

This is the key point to me.

Expecting compensation in a situation like this feels like an ex post facto thing.

2. That has changed now. We cannot go back in time and right wrongs but when we know something was wrong, we can admit to it and make whatever redress is possible and useful.

I look very skeptically on redress for things that the people involved would not have had reason to think were wrong.

3. Not all of those wrongs, and one might argue, not the most egregious wrongs were committed in 1951. HIPPA became law in 1996. The genome of Henrietta Lacks was published in 2013 and identified as hers, without seeking it receiving permission from any of her family. This is a violation not only of Mrs. Lacks, but also her family and descendants.
4. As loathe as you are to read links, I hope you will consider the following link which discusses some of the issues involving not only Mrs. Lacks’ tissues but the tissues from
other patios later used to develop tests and treatments.: https://www.science.org/content/article/what-does-historic-settlement-won-henrietta-lacks-s-family-mean-others#:~:text=In%20the%20Lacks%20case%2C%20the,the%20day%2C”%20Andrews%20says.

You are showing value. You are not showing what is the fundamental issue to me: that the conduct was considered normal.

Up thread there is an article from Nature magazine that I posted. I know you consider yourself to be somewhat informed about science so I hope you will recognize both Science and Nature as being extremely well regarded publications of scientific papers abd discussions relating to research and ethics, among other things.

The case of Mrs. Lacks is simply the most widely known example, and one that has gotten a lot of recent publicity.

Because the lawyers wanted money.

It genuinely is puzzling to me why anyone can object to a family receiving compensation for the violation of their rights and the rights of their family members, particularly when millions of dollars has been made from the contribution, however unwitting.

It is really hard not to believe that the objections have to do with the fact that this most famous/infamous case involved a poor black woman who died very young from her illness and whose contributions have saved countless lives. Why is that so disturbing?

Ex post facto.

It would be handled differently now but as you say we can't change the past.

I'm much more interested in doing right going forward than in trying to apply blame to the past.

It IS NOT LEGAL for scientists and companies to violate Henrietta Lacks’ HIPPA rights and those of her descendants in 2013 when they published her genome without permission. They violated her HIPPA rights each and every time they identified her as the source of the HeLa cells after 1996–and THEY PROFITED from those violations.

Read a link, Loren. And get over the fact that a black family is being somewhat compensated for damages done to them.

 

[TomC]

Because the lawyers wanted money.

Yep.
Wanna bet that they weren't black?
Tom

 

[Gospel]

Expecting compensation in a situation like this feels like an ex post facto thing.

Certainly, if you overlook that the family was contacted by an institution privy to medical information they didn't authorize access to. These institutions are governed by today's laws, not the ones from the 1950s when they obtained the information. It's akin to farmers justifying the use of DDT by saying "It was legal in the 1950s so we've been using it ever since!"

 

[laughing dog]

I find it wrong because why should her case be any different than all the others from back then? The proliferation of her cells wasn't known at the time.

Yes, the conduct was wrong--but it was the accepted norm. When the norm is wrong you change it, you don't punish those who followed it in the past.

No one is being punished, so what are you going on about?

Being made to pay money isn't punishment??

No one was made to do anything because it was a voluntary settlement.

 

[Toni]

I find it wrong because why should her case be any different than all the others from back then? The proliferation of her cells wasn't known at the time.

Yes, the conduct was wrong--but it was the accepted norm. When the norm is wrong you change it, you don't punish those who followed it in the past.

No one is being punished, so what are you going on about?

Being made to pay money isn't punishment??

No one was made to do anything because it was a voluntary settlement.

Your reply to Loren’s post is unfair because it is predicated on the assumption that he has read relevant links and materials.

 

[Loren Pechtel]

It IS NOT LEGAL for scientists and companies to violate Henrietta Lacks’ HIPPA rights and those of her descendants in 2013 when they published her genome without permission. They violated her HIPPA rights each and every time they identified her as the source of the HeLa cells after 1996–and THEY PROFITED from those violations.

Read a link, Loren. And get over the fact that a black family is being somewhat compensated for damages done to them.

HIPAA violation? The cells were already known to be hers, nothing new was revealed.

 

[Toni]

It IS NOT LEGAL for scientists and companies to violate Henrietta Lacks’ HIPPA rights and those of her descendants in 2013 when they published her genome without permission. They violated her HIPPA rights each and every time they identified her as the source of the HeLa cells after 1996–and THEY PROFITED from those violations.

Read a link, Loren. And get over the fact that a black family is being somewhat compensated for damages done to them.

HIPAA violation? The cells were already known to be hers, nothing new was revealed.

That’s not accurate.

It is not merely that she was identified by name—to the public! But her genome was sequenced and published with her identity attached, a violation of standards of the day, violating not only Henrietta Lacks’ privacy but also the privacy of all her surviving family members.

 

[laughing dog]

HIPAA violation? The cells were already known to be hers, nothing new was revealed.

Are you under the impression if one party violates the privacy rule of HIPPA of a client then that client is no longer entitled to privacy from other providers?

 

[Loren Pechtel]

Being made to pay money isn't punishment??

No one was made to do anything because it was a voluntary settlement.

This doesn't pass the laugh test.

Settling a lawsuit out of court isn't voluntary.

 

[Loren Pechtel]

Moreover, these firms are continuing to earn profits NOW.

All this babble about profits.

What did she lose? The opportunity to consent. Period. She suffered no financial loss because no compensation is offered with the research consents these days.

 

[Gospel]

Moreover, these firms are continuing to earn profits NOW.

All this babble about profits.

What did she lose? The opportunity to consent. Period. She suffered no financial loss because no compensation is offered with the research consents these days.

Woah woah woah. That underscores the importance of adhering to the law, as there's nothing to gain and a lot to lose in disregarding today's regulations.

 

[Jimmy Higgins]

Moreover, these firms are continuing to earn profits NOW.

All this babble about profits.

What did she lose? The opportunity to consent. Period. She suffered no financial loss because no compensation is offered with the research consents these days.

I have no apparent financial loss if my medical records are published without my consent. But that doesn't make it legal.

I'm not too big on a massive payout, of course, we don't even know what the settlement even was. How much was past tense harm verses future tense agreement on publications.

 

[laughing dog]

Being made to pay money isn't punishment??

No one was made to do anything because it was a voluntary settlement.

This doesn't pass the laugh test.

Settling a lawsuit out of court isn't voluntary.

Of course it is. No one forced anyone to settle. The defendant could go to court. It is true there was a constrained choice - settle or defend. But the option chosen was voluntary. BTW, almost every choice people makes is constrained in some way. So the only way your response makes sense is if you do not understand what "voluntary" means. "Voluntary" usually refers to acting with one's free will, which is certainly the case here.

Perhaps the problem here is

 

[laughing dog]

Moreover, these firms are continuing to earn profits NOW.

All this babble about profits.

What did she lose? The opportunity to consent. Period. She suffered no financial loss because no compensation is offered with the research consents these days.

What is all the babble about a financial loss? Since when does anyone have to suffer a financial loss in order to be compensated for violation of their rights under the law?

It is becoming glaringly evident that you have absolutely no clue what this case is about, HIPAA or what this case is about.

 

[Gospel]

What is all the babble about a financial loss? Since when does anyone have to suffer a financial loss in order to be compensated for violation of their rights under the law?

It really comes down to whether 'anyone' is perceived as 'someone' to start with. Clearly, an institution contacted someone about medical information that wasn't initially shared with them by that someone. To conclude that no one was affected in this situation, one would have to view that 'someone' as insignificant. Violating HIPAA has legal repercussions. Institutions that disclose medical information without authorization face potential lawsuits, regulatory penalties, and other legal challenges. Both the acquisition and the subsequent use of that medical information to contact Lack's descendants are significant considerations. Unless of course there is something about the descendants that make them not like anyone else who's medical info is out there without their consent.

 

[Toni]

I find it wrong because why should her case be any different than all the others from back then? The proliferation of her cells wasn't known at the time.

Yes, the conduct was wrong--but it was the accepted norm. When the norm is wrong you change it, you don't punish those who followed it in the past.

No one is being punished, so what are you going on about?

Being made to pay money isn't punishment??

No. What? You think everyone gets everything for free? And why do you believe that anyone is being MADE to pay the Lacks family money? If you read any of the links or even people's posts, or looked on the internet for yourself, you'd see that no one is MAKING anyone pay the Lacks family anything.

 

[bilby]

I find it wrong because why should her case be any different than all the others from back then? The proliferation of her cells wasn't known at the time.

Yes, the conduct was wrong--but it was the accepted norm. When the norm is wrong you change it, you don't punish those who followed it in the past.

No one is being punished, so what are you going on about?

Being made to pay money isn't punishment??

I know. It's a disgrace. I got a cup of coffee this morning, and the vendor punished me for drinking it by making me pay for it.