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Henrietta Lacks finally gets some justice. (But no money for family)

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Henrietta Lacks finally gets some justice. (But no money for family)

Old 08-08-13, 11:14 PM
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Henrietta Lacks finally gets some justice. (But no money for family)

Ms. Lacks family will, after many years, get some say and control over the usage of her genome, mapped from the HeLa cells. Unfortunately, the agreement with the NIH does not give the family any monetary compensation for research performed with the cells. Should they?


For those not familiar with the story:

Henrietta Lacks was only 31 when she died of cervical cancer in 1951 in a Baltimore hospital. Not long before her death, doctors removed some of her tumor cells. They later discovered that the cells could thrive in a lab, a feat no human cells had achieved before.

Soon the cells, called HeLa cells, were being shipped from Baltimore around the world. In the 62 years since — twice as long as Ms. Lacks’s own life — her cells have been the subject of more than 74,000 studies, many of which have yielded profound insights into cell biology, vaccines, in vitro fertilization and cancer.

But Henrietta Lacks, who was poor, black and uneducated, never consented to her cells’ being studied. For 62 years, her family has been left out of the decision-making about that research. Now, over the past four months, the National Institutes of Health has come to an agreement with the Lacks family to grant them some control over how Henrietta Lacks’s genome is used.

“In 20 years at N.I.H., I can’t remember something like this,” Dr. Francis S. Collins, the institute’s director, said in an interview.

The agreement, which does not provide the family with the right to potential earnings from future research on Ms. Lacks’s genome, was prompted by two projects to sequence the genome of HeLa cells, the second of which was published Wednesday in the journal Nature.

Though the agreement, which was announced Wednesday, is a milestone in the saga of Ms. Lacks, it also draws attention to a lack of policies to balance the benefits of studying genomes with the risks to the privacy of people whose genomes are studied — as well as their relatives.

As the journalist Rebecca Skloot recounted in her 2010 best-seller, “The Immortal Life of Henrietta Lacks,” it was not until 1973, when a scientist called to ask for blood samples to study the genes her children had inherited from her, that Ms. Lacks’s family learned that their mother’s cells were, in effect, scattered across the planet.
....

Link.
Old 08-09-13, 12:28 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

Why on earth should they get any money? They should be thrilled that their relative's cells were used to advance cancer treatments, etc. and probably save thousands of lives.

Watson and Crick didn't even discover the structure of DNA until 1953. The very idea of genomic privacy probably didn't really even exist in 1951. All they did was take some cells from a dead patient and use them in medical studies. If this had happened today or even 10 years ago, I could see some argument over privacy concerns, but not 62 years ago.
Old 08-09-13, 03:51 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

The article says that the cells were taken not long before her death i.e. there were not removed from a corpse.

My understanding is that one has to give consent for any kind of legal "harvesting" and that in certain jurisdictions some folk are remunerated for their "donations" e.g. blood.

It is an interesting thought that, while people everyday may receive financial benefit for their beauty or their wit, they should be debarred from a financial reward for another accident of atoms such as a "immortal" cells.

Although the area may seem distasteful, especially when you consider that tumour cells are essentially unwanted and harmful "waste", you have to wonder whether it is right that the family get nothing while various scientists and businessmen will have reaped a rich reward...

In an ideal world perhaps there would be a Henrietta Lack Foundation to share in the profits and maybe fund specialist healthcare to the poor/dispossessed.
Old 08-09-13, 03:56 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

Originally Posted by jfoobar View Post
Why on earth should they get any money? They should be thrilled that their relative's cells were used to advance cancer treatments, etc. and probably save thousands of lives.

Watson and Crick didn't even discover the structure of DNA until 1953. The very idea of genomic privacy probably didn't really even exist in 1951. All they did was take some cells from a dead patient and use them in medical studies. If this had happened today or even 10 years ago, I could see some argument over privacy concerns, but not 62 years ago.
If it were a white person you'd be up in arms, right?

And as was previously stated, she was still alive when they harvested her cells.
Old 08-09-13, 04:10 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

Yea, not really seeing how the family should have any say whatsoever in this. That would be all i want is a bunch of uneducated (white, black, myself) telling doctors and scientist, who are trying to further medicine, how cells from over 60 years ago should be used. Doubt any laws were around then to make this illegal anyways.
Old 08-09-13, 05:26 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

The correct decision was made (ie, no money paid). This is a cash grab from the family members. They are trying to make us feel sorry for how science was conducted 62+ years ago. Laws were different then. Liability was not seen as so much of a threat. Let sleeping corpses lie. And, I certainly think the 'prize' and fame of going down in history as being remembered for cell immortality should be compensation enough. The family will be famous 100s of years from now with the HeLa line.
Old 08-09-13, 05:34 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

Out of interest, what is the basis for the "cash grab" assertion?

And does anyone actually know what the law said in the 1960s or would it be a case that then, as many might say remains the case now, "the law" would often be enforced or not enforced in correlation to one's power and influence?
Old 08-09-13, 09:06 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

The agreement, which does not provide the family with the right to potential earnings from future research on Ms. Lacks’s genome
What's the point then? If I couldn't get any money out of it, I'd just let them keep using it for scientific study and research.
Old 08-09-13, 09:12 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

Originally Posted by Red Dog View Post
What's the point then? If I couldn't get any money out of it, I'd just let them keep using it for scientific study and research.
They are. But now at least Ms. Lacks will be recognised for her "immortal" contributions, and the family will at least be consulted.

The Lacks family and the N.I.H. settled on an agreement: the data from both studies should be stored in the institutes’ database of genotypes and phenotypes. Researchers who want to use the data can apply for access and will have to submit annual reports about their research. A so-called HeLa Genome Data Access working group at the N.I.H. will review the applications. Two members of the Lacks family will be members. The agreement does not provide the Lacks family with proceeds from any commercial products that may be developed from research on the HeLa genome.

With this agreement in place, the University of Washington researchers were then able to publish their results. Their analysis goes beyond the European study in several ways. Most important, they show precisely where each gene is situated in HeLa DNA.
And considering that there are legitimate privacy concerns, I think the agreement to be mutually beneficial and just.
Old 08-09-13, 09:27 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

Originally Posted by Why So Blu? View Post
And as was previously stated, she was still alive when they harvested her cells.
Fair enough, but it doesn't change my opinion one iota about any cash awards.

Originally Posted by Pharoh View Post
And considering that there are legitimate privacy concerns, I think the agreement to be mutually beneficial and just.
I understand that there are genomic similarities between he deceased and her descendants, but what real "legitimate privacy concerns" are there in your opinion?
Old 08-09-13, 09:36 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

Originally Posted by benedict View Post
Out of interest, what is the basis for the "cash grab" assertion?
Some of the Lackses later gave blood to Hopkins researchers, thinking they were being tested for cancer, when really the scientists wanted their genetic information to help determine whether HeLa cells were contaminating other cultures. When Ms. Lacks-Pullum asked a renowned geneticist at the hospital, Victor McKusick, about her mother’s illness and the use of her cells, he gave her an autographed copy of an impenetrable textbook he had edited, and, Ms. Skloot writes, “beneath his signature, he wrote a phone number for Deborah to use for making appointments to give more blood.”
That being said it doesn't sound like there is much remaining of Ms. Lacks.
When the researcher handed her one of the frozen vials, Ms. Lacks-Pullum instinctively said, “She’s cold,” and blew on the tube to warm it. “You’re famous,” she whispered to the cells.

Minutes later, peering through a microscope, she pronounced them beautiful. But when she asked the researcher which were her mother’s normal cells and which the cancer cells, his answer revealed that her precious relic was not quite what it seemed. The cells, he replied, were “all just cancer.”
http://www.nytimes.com/2010/02/02/health/02seco.html
Old 08-09-13, 09:40 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

Originally Posted by Pharoh View Post
They are. But now at least Ms. Lacks will be recognised for her "immortal" contributions, and the family will at least be consulted.


I guess I just don't see what would be objectionable when consulted. I'm as big on privacy as anyone, but what privacy is left after 62 years?

And they could have just decided to 'recognize' her without an agreement.
Old 08-09-13, 09:44 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

If these cells were owned by a drug company, they would want payment every time they sent them to another lab. Drug companies can get patents on genomes. I think they should get compensation. Should be relatively easy for a team of lawyers to figure out what drugs were developed as a result of her cells and what they market for them was.
Old 08-09-13, 09:52 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

Originally Posted by zyzzle View Post
The correct decision was made (ie, no money paid). This is a cash grab from the family members. They are trying to make us feel sorry for how science was conducted 62+ years ago. Laws were different then. Liability was not seen as so much of a threat. Let sleeping corpses lie. And, I certainly think the 'prize' and fame of going down in history as being remembered for cell immortality should be compensation enough. The family will be famous 100s of years from now with the HeLa line.
It's all well and good to "let sleeping dogs lie" when individuals are concerned, but when it comes to corporations, change laws (and make them retroactive) to protect corporate interests. (U.S. copyright laws are a prime example)
Old 08-09-13, 10:22 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

Originally Posted by kvrdave View Post
If these cells were owned by a drug company, they would want payment every time they sent them to another lab. Drug companies can get patents on genomes. I think they should get compensation. Should be relatively easy for a team of lawyers to figure out what drugs were developed as a result of her cells and what they market for them was.
Thank you, this was the point that was on the tip of my tongue as I read this, but wasn't sure how to word it.

My other concern was it setting a precedent for companies to hold biological data hostage for money, but it's already happening so the family should probably get something.
Old 08-09-13, 11:25 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

I guess it boils down to whether the cells were taken without permission for their use. 62 years ago it wasn't known that they could be useful for anything. It would be similar today if it turned out the hair you left on the floor of the barber shop last week had value. You may have a case for some sort of financial restitution based on its value but you wouldn't have a case regarding is use.
Old 08-11-13, 07:37 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

Haven't investigated this more thoroughly yet but have wanted to read the book for a long time. The main cash assertion is that I think there were vaccines developed exactly because of her cells and those vaccines generate a lot of money. I think. It either already happened or they want to be compensated IF that happens. I see nothing wrong with that, like descendants of songwriters and writers still getting payouts for their songs and books.
Old 08-11-13, 09:00 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

Yes, it wasn't known 63 years ago that her cells would have future value, just as in the hypothetical example of your hair having future value at the barber shop. That is no legal basis for being able to collect, I think it is called 'ex post facto' or some other latin phrase, ie you can't retroactively apply 'future' knowledge to yesterday's outcome (or, 62 years' ago knowledge) and expect that to hold water. I could be wrong, though. Any lawyers care to comment?
Old 08-11-13, 11:04 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

So if they harvested one of your loved ones tissues without permission most of you people would be okay with that, right? Is that what you guys are saying? Obviously in the name of science, right? I call bullshit on that. Most of you would sue. Don't front.
Old 08-11-13, 11:12 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

Originally Posted by zyzzle View Post
Yes, it wasn't known 63 years ago that her cells would have future value, just as in the hypothetical example of your hair having future value at the barber shop. That is no legal basis for being able to collect, I think it is called 'ex post facto' or some other latin phrase, ie you can't retroactively apply 'future' knowledge to yesterday's outcome (or, 62 years' ago knowledge) and expect that to hold water. I could be wrong, though. Any lawyers care to comment?
Well of all the legal issues, I would think there is a statute of limitations problem.
Old 08-11-13, 11:13 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

If it was used to save a life? No. I'm pretty sure I wouldn't sue.
Old 08-11-13, 11:19 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

Was consent required back in 1951. What were the laws back then. If somebody circumvented the law, then sure, this family deserves what is owed in civil setting.

Otherwise, the family deserves an official Thank-You, but nothing more.

Tumor cells were removed from her body in the complete idea of furthering science...not profit. What is happening today might be slightly changed because of the research advances and other companies which do the research (but most are funded by grants), but at the time of the removal, profit was certainly not a part of the plan.

And no, I wouldn't sue. Why the fuck would I. The only request I'd make is that a hospital be named after my relative or something and/or making sure my family's name is used/connected to all the research that came from it--which is kind of what the situation is now, I thought. It's not like scientists don't know who these cells came from.
Old 08-11-13, 11:29 AM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

Originally Posted by Why So Blu? View Post
So if they harvested one of your loved ones tissues without permission most of you people would be okay with that, right? Is that what you guys are saying? Obviously in the name of science, right? I call bullshit on that. Most of you would sue. Don't front.
If the tissue was taken because it was known at the time it was valuable? I would be mad and there should be compensation. Were it something like the hair example I gave? No, I certainly wouldn't sue. Why would I? How was I harmed?
Old 08-11-13, 12:57 PM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

Originally Posted by Why So Blu? View Post
So if they harvested one of your loved ones tissues without permission most of you people would be okay with that, right? Is that what you guys are saying? Obviously in the name of science, right? I call bullshit on that. Most of you would sue. Don't front.
Yep that's what I'm saying. First of all you're not that special. Literally tons of human cells, tissue, bones etc are carted out of hospitals every year. The fact that a little of it helped medical research is great.
Old 08-11-13, 04:49 PM
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Re: Henrietta Lacks finally gets some justice. (But no money for family)

Originally Posted by cungar View Post
Yep that's what I'm saying. First of all you're not that special. Literally tons of human cells, tissue, bones etc are carted out of hospitals every year. The fact that a little of it helped medical research is great.
Isn't the entire point of this article that Henrietta Lacks was pretty fucking special?

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