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HeLa Cell Line Genome Data To Be Published

Soulskill posted about a year ago | from the making-right-what-once-went-wrong dept.

Biotech 88

ananyo writes "Francis Collins, director of the National Institutes of Health, has brokered a deal with the family of Henrietta Lacks to release the genetic sequence of the HeLa cell line to researchers. The HeLa cell line was established in 1951 from a biopsy of a cervical tumour taken from Henrietta Lacks, a working-class African-American woman living near Baltimore. The cells were taken without the knowledge or permission of her or her family, and they became the first human cells to grow well in a lab. They contributed to the development of a polio vaccine, the discovery of human telomerase and countless other advances. Controversy erupted earlier this year after researchers published the sequence without the permission of the Lacks family. In a Q&A with the journal Nature, Collins explains how the deal was reached."

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That family is filthy fucking rich, right? (0)

Anonymous Coward | about a year ago | (#44502209)

From all the money they earned with Henrietta's intellectual property, I mean.

Re:That family is filthy fucking rich, right? (2)

fuzzyfuzzyfungus (1223518) | about a year ago | (#44502267)

From all the money they earned with Henrietta's intellectual property, I mean.

Neither the family nor the researcher who cultured the cell line made any money on it (through 'IP' licensing means, I assume having "I cultured an immortal cell line of extraordinary utility" on your CV doesn't exactly hurt a scientist's career...)

Re:That family is filthy fucking rich, right? (3, Informative)

UnknowingFool (672806) | about a year ago | (#44502533)

Also up until 2010, her grave didn't have a gravestone because she died so poor.

Re:That family is filthy fucking rich, right? (0)

Anonymous Coward | about a year ago | (#44502559)

You're joking right?
http://www.rsc.org/chemistryworld/2013/06/us-supreme-court-rules-genes-cant-patented

Re:That family is filthy fucking rich, right? (1)

interkin3tic (1469267) | about a year ago | (#44502701)

The 2013 ruling doesn't have much to do with it: the cells were obtained in 1951.

Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits.

The Immortal Life of Henrietta Lacks.

I don't remember exactly, but I think getting treated at the hospital meant signing something similar to a EULA that said the hospital gets all rights to anything it wants and you get cured if you're lucky. Informed consent wasn't much of a concept at the time if I remember the book correctly. No one mentioned they were going to try to grow her cells in a dish. To be fair, that hadn't ever worked before, and the original intent wasn't "sell the cells around the world for a profit."

Re:That family is filthy fucking rich, right? (1)

Russ1642 (1087959) | about a year ago | (#44502619)

Since when is your excised tumour considered intellectual property?

Re:That family is filthy fucking rich, right? (0)

Anonymous Coward | about a year ago | (#44502705)

It's considered personal property, anything derived from it is benefiting from you, thereby giving you a share of the intellectual property resulting therefrom.

You want to use my body for your research? Ask permission first.

Re:That family is filthy fucking rich, right? (1)

K. S. Kyosuke (729550) | about a year ago | (#44503001)

I hope, citizen, that you've paid the royalties on all the genes you don't own, i.e., on those 98+ percent or so of genes you share with all other humans. Or on all the genes you share with all higher animals. You wouldn't steal a chromosome!

Re:That family is filthy fucking rich, right? (0)

Anonymous Coward | about a year ago | (#44503685)

Sorry, but as a minor, I was unable to constructively contribute to my parent's decision on that.

Feel free to sue them, if you can determine you have the rights, but me? I'm fine, since the actions were taken without any ability on my part to even approve of them.

Re:That family is filthy fucking rich, right? (1)

Ralph Wiggam (22354) | about a year ago | (#44503355)

She signed away those rights in exchange for free or low cost health care.

Re:That family is filthy fucking rich, right? (0)

Anonymous Coward | about a year ago | (#44504013)

You can produce that document with her signature?

Nope.

Sorry, but this was the fifties, they didn't even think of asking, they just went ahead and did it without even informing the family, then they started to pester the family about it, which lead to the family finding out was done.

Re:That family is filthy fucking rich, right? (1)

noh8rz10 (2716597) | about a year ago | (#44505611)

so are these later generations of cells derivative works? zing!

So, for this "Problem of Evil" paper (0)

Anonymous Coward | about a year ago | (#44502263)

Do I put Henrietta getting cancer down in the "good" column, or the "evil" column...?

Everything you need to know. Engrossing. (2)

WOOFYGOOFY (1334993) | about a year ago | (#44502309)

Re:Everything you need to know. Engrossing. (0)

Anonymous Coward | about a year ago | (#44505993)

TIL that pieces of a poor black woman's uterus accidentally ended up in every cellular research lab in the world.

(That would be funny if it was the other way around. Hey-oh.)

Ghetto lottery... (-1)

Anonymous Coward | about a year ago | (#44502315)

... and I'm sure there's some 'racism' in there as well.
Isn't the first word that blacks learn when they are children? "Racist". Das' my boy!

It could have been anyone's cells (4, Insightful)

Rude Turnip (49495) | about a year ago | (#44502539)

They just happened to be Henrietta's. The real stars here are the people who conducted the research and actually did the work.

I mean, if someone used my cells to do something incredible for science, I don't feel like I am particularly deserving of any credit. Those cells have nothing to do with me as a person or my actions.

Re:It could have been anyone's cells (0)

Anonymous Coward | about a year ago | (#44502641)

No, her cells did something quite different than anybody had seen before. They could be kept alive. I believe the term uses was immortal.

She was special.

Re:It could have been anyone's cells (-1)

Anonymous Coward | about a year ago | (#44502859)

Hela cells were the first obvious example of devolution to be studied. In my opinion, the philosophical impact of this is still not completely appreciated.

Re:It could have been anyone's cells (2)

K. S. Kyosuke (729550) | about a year ago | (#44502945)

She was special.

No, her diseased cervix was special. It's not like she was a walking colony.of fused cancer cells. Unless, of course, you want to claim that she was special because she managed to get infected by the right virus at the right time and in the right place. But that's about as much being special as getting hit by a meteorite. It's not as much you who is special as the event on its own.

Re:It could have been anyone's cells (2)

Samantha Wright (1324923) | about a year ago | (#44506003)

Three of them, actually. It was basically a clusterfuck of STDs—three different strains of genital warts all causing cervical cancer at the same time. On the big ol' scale of lifetime achievements, considering that there was pretty much no public education on STDs at the time, it's a bit of a downer.

Re:It could have been anyone's cells (1)

WOOFYGOOFY (1334993) | about a year ago | (#44508883)

You're confused . No one is saying the ( volitional )contents of Lack's mind were special, which is basically for some reason where you're putting the bar for the intersection of "special" and "person".

They're saying her cells were special- and they did act in a way that researchers had been frutilessly searching for for a long time. If you follow the link, you'll see what the whole thing is about.

White irreligious people of European descent may not care about what does or does not happen with or without their knowledge and permission to their bodies after death, but not everyone is a white, irreligious person of European descent, and what those other people think, matters.

You get the idea of a private citizen owning their own body after death and having the right to direct how it will be disposed of, I'll bet I mean, you'd scream bloody murder if the state started disposing of dead people's effects as the state saw fit.

Now perhaps you people mean when they say your perspective is narrow and "culture bound" .

Re:It could have been anyone's cells (2)

K. S. Kyosuke (729550) | about a year ago | (#44510169)

You're confused . No one is saying the ( volitional )contents of Lack's mind were special, which is basically for some reason where you're putting the bar for the intersection of "special" and "person".

It's you who's confused because I wasn't considering her mind, not even for a second. This is purely about physical biology.

They're saying her cells were special

They were not exactly "her cells"; they were a freak combination of partly her cells and partly something else that resulted in something that was neither of the two (demonstrating this fact neatly with killing her so that would be no confusion about that).

and they did act in a way that researchers had been frutilessly searching for for a long time.

Actually, no. I don't think anyone has been "fruitlessly searching for a long time" for this. Similar things have existed in nature for a long time (canine transmissible venereal tumor cell line must have been around for thousands of years), this one just came handy. The problem is also that you never know what kind of cell line an event like this is going to generate, given the essentially unbounded number of possible different properties of the resulting cell cultures, so saying "this is what researchers were looking for" as if the HeLa cell line were some sort of a unique microbiological Messiah is indicative of a serious lack of understanding.

If you follow the link, you'll see what the whole thing is about.

It's about everymen being clueless. Pretty mundane stuff, if you ask me.

White irreligious people of European descent may not care about what does or does not happen with or without their knowledge and permission to their bodies after death

That makes "white irreligious people of European descent" smart, because it's the reasonable thing to do. Worrying about things you can't affect is a waste of time. Being in denial that things that you won't like are going to happen ("OMG worms are going to eat me!") is no better. Oh, and congratulations for winning the Best Religious Non-sequitur Remark of the Week Award.

but not everyone is a white, irreligious person of European descent, and what those other people think, matters

Actually, it doesn't. At least not if you present it like this, as a general statement. If someone said something to me, it would never matter to me merely because someone said that; it would matter to me if it made sense after being given a due amount of critical judgment by me. People do this all the time: it's the only way to filter out complete bullshit that some people spew out by the metric fucktons. And if you think you're different, you're only deluding yourself, everyone filters.

You get the idea of a private citizen owning their own body after death

You don't get to actually own anything after your death, the very idea of ownership applies only to living persons.

and having the right to direct how it will be disposed of

That's not only impractical but utterly impossible. First, I really hope you collect all your skin flakes as you're walking around spreading them. They are, after all, a part of your body, and during your lifetime, the biomass you shed this way will eventually vastly overshadow the cells that were biopsied from Lacks' cervix. Also, right now, thanks to the carbon cycle, you have in your body parts of other people long dead now who didn't consent to being part of you. What horror! But most people don't actually care about that. Talk about hypocrisy...

I'll bet I mean, you'd scream bloody murder if the state started disposing of dead people's effects as the state saw fit.

If you'ra talking about effects, these disappear when you take them, so if anyone is actually interested in them, you'd deprive that person of these effects. Here the equivalent would stealing Lacks' body from the morgue which is an event that simply didn't take place.

Re:It could have been anyone's cells (1)

WOOFYGOOFY (1334993) | about a year ago | (#44511627)

---It's you who's confused because I wasn't considering her mind, not even for a second. This is purely about physical biology.

You score one point of a total inability to follow an argument. I was pointing out that YOUR IMPLICIT CRITERIA was such. Not that you consciously realized what you were implying.

That whizzing sound is points going over your head.

--They were not exactly "her cells"; they were a freak combination of partly her cells and partly something else that resulted in something that was neither of the two (demonstrating this fact neatly with killing her so that would be no confusion about that).

Score one point for total biological ignorance. MOST of anyone's healthy body is FOREIGN ORGANISMS, mostly bacteria, which are practically inseparable from "our cells".

  So by your scientifically illiterate standards , none of our bodies can ever really be considered as ours and the state or scientists should be able to treat us like it treated Lack.

Getting the theme here? No? You're ignorant !

--Actually, no. I don't think anyone has been "fruitlessly searching for a long time" for this.

Yeah, it's just a fact about history that you're wrong. Nothing more to say there, except that not only do you know zero about the history of HeLa cells, but you don't think you need to to hold forth on the subject.

--That makes "white irreligious people of European descent" smart, because it's the reasonable thing to do. Worrying about things you can't affect is a waste of time.

Score a point for using self validating arguments ! Thanks for saying this actually because it proves you're exactly what I implied- an ignorant narcissist who doesn't even understand the idea of "a limited culturally bound perspective." Your POV is just the the turth, even when the truths we're talking about are not scientific, but only human values which vary across cultures. You're values are right and you don't need to respect other people's values.

Hey low IQ asswipe, the world is sick of fighting wars started by people like you and bin Laden, who agrees with you about not respecting other people's cultures and the "being right" part especially, so do the world a favor-fav and leave the thinking to others.

--That's not only impractical but utterly impossible. First, I really hope you collect all your skin flakes as you're walking around spreading them.

Well the laws of every state in this nation and all other nations say the dead do get to specify what is to be done with their bodies, one option of which is to donate it to science, so you must wonder what all those billions of people are talking about.

Guess that's the state you walk around in most of the time.

Re:It could have been anyone's cells (2)

goffster (1104287) | about a year ago | (#44502657)

Actually, no.

Her cells have shown the remarkable ability to not die out.
Everybody else's seem to.

Re:It could have been anyone's cells (0)

Anonymous Coward | about a year ago | (#44502807)

Actually, no.

Her cells have shown the remarkable ability to not die out.
Everybody else's seem to.

Not really. There are hundreds of human cell lines: http://www.atcc.org/Products/Cells_and_Microorganisms/Cell_Lines/Human/Alphanumeric.aspx
So there is nothing unique about HeLa. Many cell types will become immortal if you turn off the p53 pathway and/or express some TERT irrespective from which person they came from.

Re:It could have been anyone's cells (0)

Anonymous Coward | about a year ago | (#44505127)

There wasn't at the time, and without her line the others might have not been discovered.

Re:It could have been anyone's cells (0)

Anonymous Coward | about a year ago | (#44505657)

There wasn't at the time

Yes, there were. Unknown is not the same as non-existent.

without her line the others might have not been discovered

That's highly unlikely.

Re:It could have been anyone's cells (1)

idontgno (624372) | about a year ago | (#44502747)

Thanks for your input, Subject 324651-34.

But you're not getting out of that paternity suit that easily.

Re:It could have been anyone's cells (3, Insightful)

interkin3tic (1469267) | about a year ago | (#44502795)

The privacy concerns are more of a valid issue though. I wouldn't want anyone publishing my parent's genomes, even if they did get my parents' permissions first. Part of that is my genome, so necessarily, part of my DNA would be published with the family name on it.

Re:It could have been anyone's cells (2)

Guppy (12314) | about a year ago | (#44504949)

The privacy concerns are more of a valid issue though. I wouldn't want anyone publishing my parent's genomes, even if they did get my parents' permissions first. Part of that is my genome, so necessarily, part of my DNA would be published with the family name on it.

Let's flip this around. Suppose for some reason there is something interesting about my personal genetic profile, and I want my data to be published (for SCIENCE!), but my estranged adult child is trying to have the publication quashed. Does he have a right to choose happens to my personal data?

How about if his sister disagrees and decides she supports the publication? Maybe she supports it because her kid may share some unusual syndrome I have? How about when my grandchild is someday the only one around to make the decision -- let's say my grandchild leaves no descendants, does he get to make the decision that stands for perpetuity, or does it become moot upon his death?

Re:It could have been anyone's cells (0)

noh8rz10 (2716597) | about a year ago | (#44505635)

you act like this is a quandary, but it's actually pretty simple. the immediate family shares a bloodline, so they share this private medical info. anybody can veto its release. once you're dead, its no longer your info, it's your sons or grandsons info. so when your grandson is the only one left then his word is the word. after he dies it's anyone's came. capisce?

Re:It could have been anyone's cells (0)

Anonymous Coward | about a year ago | (#44506043)

So ones right to privacy trumps anothers right to survival. Got it.

Re:It could have been anyone's cells (1)

interkin3tic (1469267) | about a year ago | (#44512135)

Let's flip this around. Suppose for some reason there is something interesting about my personal genetic profile, and I want my data to be published (for SCIENCE!), but my estranged adult child is trying to have the publication quashed. Does he have a right to choose happens to my personal data?

Legally? I don't know. Ethically? Probably not. Ideally, you all would sit down and act like adults about it. This is getting a bit hypothetical for my tastes, I'm just saying why the Lacks family has a real concrete concern in this specific case.

Re:It could have been anyone's cells (1)

LordLucless (582312) | about a year ago | (#44506243)

Part of that genome is the genome of every member of the species. Do you really think we should get sign-off on all current and future members of the human race before we can publish a genome?

Re:It could have been anyone's cells (1)

interkin3tic (1469267) | about a year ago | (#44516011)

The human genome has already been published, so no obviously. But that's anonymous. HeLa cells are well known and publicly identified to be of a specific family.

Re:It could have been anyone's cells (1)

LordLucless (582312) | about a year ago | (#44517227)

How big is that family? You assert that the children of the donor should also give permission. What about grandchildren? What about great-granchildren? Great-great-great-great-great-great-great-grandchildren?

If I donate my DNA, that also reveals my parents DNA, and therefore my aunts and uncles, cousins, grandparents, great aunts, great uncles, second cousins, great-great-grandparents, etc. It doesn't take too many generations to create a barrier that effectively its impossible to get authorisation to study any human DNA at all.

Re:It could have been anyone's cells (1)

interkin3tic (1469267) | about a year ago | (#44517471)

Look. Read my original post. I wouldn't want... I don't know what you're arguing for. "I would be completely overjoyed that people could have a good clue as to my genomic sequences without a warrant." Is that what you're wanting?

I'm not making an argument about whose permissions one should need in order to publish genomes. Just that the Lacks' could have had reasons for not wanting this to be free for anyone to peruse.

Re:It could have been anyone's cells (1)

LordLucless (582312) | about a year ago | (#44517543)

I don't know what you're arguing for. "I would be completely overjoyed that people could have a good clue as to my genomic sequences without a warrant." Is that what you're wanting?

It'll do. I would have settled for apathetic.

Re:It could have been anyone's cells (1)

Rude Turnip (49495) | about a year ago | (#44508771)

You assume you have "ownership" of genetic material that's been around for millions and billions of years. You do not.

Re:It could have been anyone's cells (1)

interkin3tic (1469267) | about a year ago | (#44515995)

No I don't, that's a strawman argument. Maybe that's the legal argument one would take if they for some reason wanted to go to court, but that wouldn't be my intent even if I WERE the family in question. I'm just saying I wouldn't want DNA sequences that could tell people private information about me to be public.

Re:It could have been anyone's cells (3, Insightful)

UnknowingFool (672806) | about a year ago | (#44503027)

Yes but you can consent to them being used. Henrietta Lacks never gave consent. They were harvested from her and used for decades.

Re:It could have been anyone's cells (1)

TubeSteak (669689) | about a year ago | (#44503799)

Why not ban all research on tissues from unconsenting donors?

The goal of medical research is public benefit, to try to make discoveries that are going to help people. And although the use of archived specimens is limiting in certain ways, [those tissues still offer] an incredible trove of material. If you shut off access to them, you would undoubtedly slow research right now, in terms of diseases such as cancer. The trade-off would not justify that extreme position.

Requiring consent is an extreme position?
I'd say that calling it an extreme position is very self serving and not at all honest.

Re:It could have been anyone's cells (0)

Anonymous Coward | about a year ago | (#44506117)

What damage can be caused by one's DNA sequence being generally available?

There are tangible concerns that can come from something like NSA spying on everyone. Meddling in our affairs and such, whatever. The only thing that comes to mind in the case of DNA is insurance/jobs based upon the contents. However, those are problems that can and should be dealt with.

No one can killed, maimed, or really truly impacted in any other way.

The reasons to be concerned about this are entirely man made and can be done away with.

Re:It could have been anyone's cells (1)

UnknowingFool (672806) | about a year ago | (#44508879)

The only thing that comes to mind in the case of DNA is insurance/jobs based upon the contents. However, those are problems that can and should be dealt with.

That's exactly what the family is doing. They don't want everyone in the entire world being able to see their genes (as her children and grand children are still alive). Researchers will have access to it but the NIH will limit the access to presumably legitimate research.

Re:It could have been anyone's cells (2, Insightful)

Anonymous Coward | about a year ago | (#44505671)

Yes but you can consent to them being used. Henrietta Lacks never gave consent. They were harvested from her and used for decades.

Be realistic. How many people, prior to DNA becoming a mainstream concept, would ever have given even half a shit if the doctor wanted to use a chunk of TUMOR they had removed? Other than a small group of religious fanatics concerned about someone casting black spells on them with it... nobody, that's who.
It was the 50's, medical waste was just that- waste. Nobody cared about what you did with their body trimmings any more than they cared what you did with their fecal material and urine.

Re:It could have been anyone's cells (0)

Anonymous Coward | about a year ago | (#44506769)

And just a couple of decades earlier Lacks her self could've been bought and sold, but that doesn't mean it's right you moron.

Re:It could have been anyone's cells (0)

Anonymous Coward | about a year ago | (#44505731)

Henrietta Lacks never gave consent.

Wah.

Ethics are not a line in the sand across which we should never step. It comes down to having the right reasons. Her DNA is rare and should be used to treat/cure disease that can impact the species detrimentally.

We can and should disallow using the knowledge gained to harm individuals that are still alive if such an opportunity should come to light. But there is still plenty we can do with this knowledge that will have no impact on the living people that share (only portions of) her DNA.

Helping the species is a valid reason to do this work regardless of consent. Henrietta, now a corpse, cannot be abused by this. Nor can her family at this point, since we don't have the tech. Concerns about their privacy are irrelevant. In the future we may need safe guards for this, but it should not halt this type of work.

Don't mistake me for some anti-privacy, pro-errybody up in your bizness. I'm against the government and corporate snooping. There are reasons to be against it. The reasons for this work outweigh the concerns of a dead person and a few relatives that will cease to exist before it could be used against them.

Re:It could have been anyone's cells (1)

UnknowingFool (672806) | about a year ago | (#44508859)

Concerns about their privacy are irrelevant. In the future we may need safe guards for this, but it should not halt this type of work.

Privacy wouldn't be a concern if her surviving children and grandchildren didn't share her genes. This not someone who died hundreds of years ago whose relatives have a tiny portion of her DNA. Her immediate family will have their genetic information exposed as well as hers.

Re:It could have been anyone's cells (0)

Anonymous Coward | about a year ago | (#44507489)

You said it yourself, if its YOUR cells. They are yours, it's true that you were just lucky and the work wasn't made by you but it was made on something that is yours (or should be) take mind that the scientists that made the work didn't received compensation either.

If you are born into a rich family you didn't made the work nor the wealth you now have, but it's yours and no one has the right to use your things without authorization or compensation. It the same here. Unless I'm mistaken in in US law your cells aren't yours.

Re:It could have been anyone's cells (1)

sjames (1099) | about a year ago | (#44510967)

You might feel just a bit slighted if neither you nor your family could afford any of the treatments that were derived from studying your cells though. Just such a modicum of gratitude might have been in order somewhere, particularly from the corporations that did make a fortune selling off cultures of your cells that they claimed they had some special proprietary right to even while they claimed that you did not.

If someone visits your house and finds the entrance to a gold mine on your property, it is your gold (though you're an ungrateful bastard if you don't share the wealth with the finder).

Glad that the family did not stop this (1)

Anonymous Coward | about a year ago | (#44502637)

The biger achievemnt here is not the genome, but the fact that we can work over legacy issues with the family and resolve those in an amicable way. The HeLa cell line (and probably many other lines) where established at time when taking patient consent for using clinical samples in research was not an established procedure. Since then we have learned a lot and accumulated huge amouts of data using HeLa and similar cell lines. So resolving the ethical issues from the past is quite important.

  What is quite fascinating is that having its genome sequenced is probably not as big of a deal as it would have bee five or ten years ago. It no longer takes a lot of effort or money to sequence the genome of a cell. These days it won't even make a grad student project. Besides, there is no such thing as one HeLa genome. These cells have been cultured for so long by so many labs that genomic rearrangements, mutations and epigenetic modifications have piled up to produce "breads" with somewhat different genomes and properties. I recall a student in our lab testing several of these "breads" to find out that an experiment will produce different result depending on which lab we sourced the cell line from.

how is her race or social status relevant? (0)

Gothmolly (148874) | about a year ago | (#44502813)

Unless we're trying to sensationalize. We're already doing straight copypasta from TFA for the Slashdot summaries, so I guess we have to spice things up.

What do the editors do other than play Doom and eat cheetos and click 'Approve' on lousy submissions?

What right do they have? (2, Insightful)

brillow (917507) | about a year ago | (#44502865)

Tissue samples taken from your body, are not your property.

Also, Ms. Lacks is long dead, why does anyone care what her family says about anything? They aren't their cells.

Re:What right do they have? (2, Insightful)

UnknowingFool (672806) | about a year ago | (#44503115)

So I can come right over and extract tissue samples without your consent? Later I'm going to publish your genome and show the world all your genetic flaws and all the markers that show your risk to cancer. Don't want it published? Too bad. This would not be an issue if they asked and got her permission.

Re:What right do they have? (2)

Rockoon (1252108) | about a year ago | (#44503309)

So I can come right over and extract tissue samples without your consent?

Are you suggesting that thats what they did in this case?

Since it isn't, nothing you say that relies on this tripe bullshit actually matters. They did not kidnap this woman, strap her down, and forcefully extract her blood without consent.

She consented. Nobody at all seems to think otherwise 'cept for you.

Re:What right do they have? (4, Insightful)

UnknowingFool (672806) | about a year ago | (#44504129)

Are you suggesting that thats what they did in this case?

Suggesting it? Have you read up anything on this case? From wikipedia [wikipedia.org] :

Neither Lacks nor her family gave her physician permission to harvest the cells. At that time, permission was neither required nor customarily sought. The cells were later commercialized. In the 1980s, family medical records were published without family consent. In March, 2013, German researchers published the DNA code, or genome, of a strain of HeLa cells without permission from the Lacks family

Since it isn't, nothing you say that relies on this tripe bullshit actually matters. They did not kidnap this woman, strap her down, and forcefully extract her blood without consent.

Please read up something on this case before spouting out BS yourself.

She consented. Nobody at all seems to think otherwise 'cept for you.

Please show me one source, one form where she consented to have tissue samples harvested from her for medical research. These days, I have to sign a crap load of documents just so that my insurance can share my name with third parties. Back then they just took what they wanted.

Re:What right do they have? (2)

Rockoon (1252108) | about a year ago | (#44504771)

Please show me one source, one form where she consented to have tissue samples harvested from her for medical research.

Why are you moving the goal post?

She went to that hospital because she had cancer. During her treatment they cut out some of her cancer. She did this all willingly. Nobody stole her cells without permission.

So the argument goes right back to if those cells, after her willingly let them extract them, are her property or not

This is why your scenario of going to someones house and taking their cells against their will is different. This is why your made up scenario does not fit the real scenario. She had cancer. They removed some of it. She did not say "please don't cut out the cancer" .. she said "please try to cut out all the cancer"

Re:What right do they have? (1)

noh8rz10 (2716597) | about a year ago | (#44505857)

maybe it's like car repairs, where i always request to take the old parts home! that way they don't try any shenanigans such as using my used parts to make more parts without my consent.

Re:What right do they have? (0)

Anonymous Coward | about a year ago | (#44506075)

Duh. Putting used parts in someone's car is an unsafe practice that could lead to physical injury or death. How exactly can a dead persons DNA be used to harm them or their relatives? To my knowledge, we have no ability to create weapons that can selectively target individuals based upon their DNA.

I'm wondering about like legit harm here. Can it be used to give them disease? Or make them blind? I don't think our biotech industry has gotten that advanced.

Re:What right do they have? (1)

dfghjk (711126) | about a year ago | (#44508041)

The used parts are proof the work was done on YOUR car. People don't care enough to prevent fraud that occurs to someone else.

Re:What right do they have? (1)

UnknowingFool (672806) | about a year ago | (#44509225)

She went to that hospital because she had cancer. During her treatment they cut out some of her cancer. She did this all willingly. Nobody stole her cells without permission.

You missed the whole point. She consented to being treated. She never consented to being used for research. If you die in a hospital, that means the hospital can use your body for medical research? Your organs can harvested and used for transplants without you consenting? After all you don't need them any more, what do you care?

This is why your scenario of going to someones house and taking their cells against their will is different. This is why your made up scenario does not fit the real scenario. She had cancer. They removed some of it. She did not say "please don't cut out the cancer" .. she said "please try to cut out all the cancer".

Again missing the whole point.

Re:What right do they have? (1)

Rockoon (1252108) | about a year ago | (#44530871)

You missed the whole point.

Your whole point was that it was like stealing someones cells without consent. You stated it very directly. Go over to someones house and just take them without permission.

You seem to have missed the point that the analogies that you use are not supposed to have meaningfully different aspects to them.

Re:What right do they have? (1)

UnknowingFool (672806) | about a year ago | (#44534891)

Your whole point was that it was like stealing someones cells without consent. You stated it very directly. Go over to someones house and just take them without permission.

Again wikipedia: "Neither Lacks nor her family gave her physician permission to harvest the cells"

You seem to have missed the point that the analogies that you use are not supposed to have meaningfully different aspects to them.

Please read more carefully.

Re:What right do they have? (1)

Anonymous Coward | about a year ago | (#44506047)

She had a biopsy for diagnostic purposes. Unless a patient requests that leftover tissue be returned to them, anything not needed for diagnosis is fair game for research purposes, considered effectively discarded by the patient. This is true of, say, a gallbladder removed for gallstones or a biopsy taken for cancer. The vast, vast majority ends up getting thrown out anyway.

Re:What right do they have? (1)

aztektum (170569) | about a year ago | (#44506349)

You seem to have missed the part in your own citation where it says "At the time, permission was neither required nor customarily sought."

Regardless, you've done nothing in this thread but cherrypick details that fit your personal views.

She consented to medical treatment. That is unless you can show someone was holding a gun to her head, since I doubt you were there. In 1951 that was all that was required. Whether you agree with it or not is irrelevant.

Re:What right do they have? (1)

UnknowingFool (672806) | about a year ago | (#44509003)

Treatment != use for research. If you die in a hospital during treatment, can the hospital simply harvest all your organs for medical research? No. They have to obtain consent. As for 1951, just because it was done in the past does not make it right or ethical. In the past your medical history could be released without your consent. These days, it is recognized that privacy is a right.

Read wiki (1)

aepervius (535155) | about a year ago | (#44507365)

Consent was not required then, and now , the California supreme court decided that for medical waste *no* consent was required. In fact the cell could be harvested today without their consent. Where it begins to be an ethical problem is when the genome for the cell are published, genome they share and could negatively impact them if something special is found in it.

But the bigger asshole were the journalist/press which within years revealed the true name of the family. At least the scientist had the forsight to give it a random name starting with He and La.

Re:Read wiki (1)

UnknowingFool (672806) | about a year ago | (#44509087)

Consent was not required then, and now , the California supreme court decided that for medical waste *no* consent was required. Where it begins to be an ethical problem is when the genome for the cell are published, genome they share and could negatively impact them if something special is found in it.

What? Consent is required today. The Court ruled that discarded samples could be used. The key term is discarded. The HeLa samples were kept not discarded. Generally the courts are following the same rules are abandoned property. Notice has to be given before property is to be disposed. A legitimate attempt to contact the owners must be done. If the owner does not respond within a certain amount of time, the property is deemed abandoned.

In fact the cell could be harvested today without their consent.

What? I don't know of any medical facility where they took a sample from me without telling me. Blood work, x-rays, every one of them required a consent form.

Re:What right do they have? (1)

Anonymous Coward | about a year ago | (#44505067)

So I can come right over and extract tissue samples without your consent?

Except she did give consent -- for the surgery that removed her cancer (or at least attempted to). The legal status of the removed tissue was kind of an afterthought left to a later generation.

Re:What right do they have? (0)

Anonymous Coward | about a year ago | (#44505697)

So I can come right over and extract tissue samples without your consent? Later I'm going to publish your genome and show the world all your genetic flaws and all the markers that show your risk to cancer. Don't want it published? Too bad. This would not be an issue if they asked and got her permission.

It's not an issue and never was, until now.
In the 50's, medical waste was simply waste, nobody gave or required consent. Ya, she was black, which had exactly nothing to do with it. Ya, she was poor, again completely irrelevant.
As for the genome, that's not even an issue. It's not "her cells", they were cancerous (read: mutated) cells. And there are many, many strains of those cells these days.
No, the only thing which ought to be done is offer recognition, which is what has happened.

Re:What right do they have? (0)

Anonymous Coward | about a year ago | (#44505961)

So I can come right over and extract tissue samples without your consent?

No, but she was sick. She was seeking treatment for her illness. In this time period it was not seen as a necessity to get the consent needed. Do we just ignore this because back in her time the system worked differently?

Later I'm going to publish your genome and show the world all your genetic flaws and all the markers that show your risk to cancer. Don't want it published? Too bad. This would not be an issue if they asked and got her permission.

Who cares? What can they do with the genome info of a dead person against relatives that only share portions of her DNA?

Keep me from having a job for insurance reasons? Sounds more like a problem with our insurance and employment systems.

Are they going to ridicule me for having a certain sequence? HAHA! You have a dorky gene sequence! Whatever. Most people haven't a damn clue what DNA stands for.

Don't get me wrong, there are reasons to be for privacy. Outside meddling and influence are legit concerns. But in this case, the reasons for this research have thus far outweighed any real harm. Outside the work related issues I mentioned, which again is a societal problem we can and should fix. Dollars to donuts that's what any argument against you can come up will boil down to.

Re:What right do they have? (1)

UnknowingFool (672806) | about a year ago | (#44509121)

Who cares? What can they do with the genome info of a dead person against relatives that only share portions of her DNA?

Her family cares. You know people who share significant portions of her DNA like her children and grandchildren. These are not distant relatives. You do understand that genetic information is medical information right? Diseases can be predicted through DNA. I wouldn't want the whole world to know about these things.

Re:What right do they have? (1)

Jane Q. Public (1010737) | about a year ago | (#44503395)

"Tissue samples taken from your body, are not your property."

Actually, yes they are, unless you sign away your rights to them. Or at least, they CAN be. It depends on the circumstances, and what country you are in.

In many places (including, historically, the United States), the substance of your body has been the most precious of possessions, and legally inviolable.

Re:What right do they have? (0)

Anonymous Coward | about a year ago | (#44504421)

why does anyone care what her family says about anything? They aren't their cells.

Because the cells share genetic information the living family members. [wikipedia.org] Thus, medical or genetic information about living (and future) relatives can be gleamed from the genome of these cells. This is a concern for their privacy. [wikipedia.org]

No, it's not (1)

Anonymous Coward | about a year ago | (#44502893)

It is being locked down after decades of being used in countless research projects. The family wants to protect their privacy, so the data is actually being locked down, not opened up as TFS implies. The data has been out there and only small parts of it are now going to be shared with researchers with a need to know.

Re:No, it's not (1)

RDW (41497) | about a year ago | (#44504525)

It is being locked down after decades of being used in countless research projects. The family wants to protect their privacy, so the data is actually being locked down, not opened up as TFS implies. The data has been out there and only small parts of it are now going to be shared with researchers with a need to know.

Nothing that's been available for decades is being locked down. The cells themselves remain available, as do the many public sequences of individual genes and other genomic fragments derived from HeLa over the years. All that's being restricted here is access to two versions of the complete genome sequence of HeLa described in papers published in 2013. One of these genomes was briefly available without restriction earlier this year. I don't see anything to suggest that 'only small parts' of the data will be made available, and I imagine that suitably qualified researchers will be able to request anything up to genome-wide variant lists and even raw sequence reads if necessary (similar controlled access arrangements already exist for other personal genome projects where consent was obtained by more conventional means).

Many People Miss The Central Lesson of HeLa (3, Interesting)

Jane Q. Public (1010737) | about a year ago | (#44503351)

... and that is:

The line of cells that was used for decades to develop drugs and treatments, and do other research, were not "normal" human cells at all, but cancer cells.

It wasn't until relatively recently that some scientists pointed out that maybe they weren't such a suitable medium for a lot of the research that had been done in the past.

Re:Many People Miss The Central Lesson of HeLa (0)

Anonymous Coward | about a year ago | (#44507549)

They aren't even really human cells any more, they have diverged so much. And it turns out that many other cell lines in existence have actually been infected by HeLa because it reproduces so well.

Interesting (1)

koan (80826) | about a year ago | (#44503643)

To me is that essentially a part of Henrietta is still alive after all these years, you can't get this kind of genetic immortality through children.

Donate (1)

Anonymous Coward | about a year ago | (#44503661)

I suppose this is as good a time as any to humbly encourage anyone who's benefited from research on Ms Lacks' stolen cells (all of you) to donate to the Henrietta Lacks Foundation, which attemps to right the wrongs of the past by providing education and medical care to the descendants of Ms. Lacks.

http://henriettalacksfoundation.org/

I use them (4, Interesting)

Sir Holo (531007) | about a year ago | (#44504477)

I learned about the HeLa cell line recently, because I've begun working with them. In the field, they are a sort of de-facto standard. It's amazing that the culture of her tumor has lived this long –– far longer than it took to kill its host –– in fact for decades more. Henrietta Lacks deserves respect and remembrance for her unwitting gift to humankind, which arose from her own personal tragedy.

Fun fact: There are cancers that one can "catch" from another infected individual. If you are a Tasmanian devil, Syrian hamster, or sexually promiscuous dog, that is.

See the Wiki or Harper's mag for details. http://harpers.org/archive/2008/04/contagious-cancer/ [harpers.org] –– Don't like pay-walls? Go to your local library!

Re:I use them (0)

Anonymous Coward | about a year ago | (#44506753)

How are they immortal? How do they continue to live?

Misread Title (1)

multimediavt (965608) | about a year ago | (#44504497)

I started reading the title to this post and initially got helium-lanthanum cell line and thought it was a battery story until I got to genome.

These days, it's easy to be immortal (0)

Anonymous Coward | about a year ago | (#44505367)

As a Personal Genome Project [personalgenomes.org] participant, I have a cell line at Coriell [coriell.org] that anyone with $80 to spare can order. These days, they just infect your cells with Epstein-Barr [oxfordjournals.org] , and instant immortality.

Glad the info we paid for is again available to US (1)

johnwerneken (74428) | about a year ago | (#44505565)

Why were the family concerns considered worth blocking research over? I find it unbelievable that an individual would be thought to "own" their dna.

Credit where credit is due. (1)

Tyr07 (2300912) | about a year ago | (#44505659)

I've seen comments on this article saying the researches deserve the credit for the work they did.
It's true, they do.

However you have to remember that these cells were part of a human being, a person. They're part of what ended their life, it's what killed them.
If you liked it to a criminal who killed someone, but then managed to do something for the scientific community, do we ignore the victim?

No it's not even quite the same, but I wanted to grab your attention for a moment with the fact that a young women died because of this.
She managed to leave humanity a gift without knowing it in her passing. They're still her cells, that we have kept alive.

So we need to have respect for her remains, as that's what they are. I'm sure all of us would like to know the next generation would honor our remains
if we were killed by something like that, a senseless death if you will. At least something came of it.

So yes, I believe she deserves credit as well. As they are part of her body, part of her being, continuing to help us.

Isn't that from a DMB song? (0)

Anonymous Coward | about a year ago | (#44506115)

Best of What's Around!

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