HeLa Cell Line Genome Data To Be Published 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."
Re: (Score:3)
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? (Score:4, Informative)
Re: (Score:2)
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
Re: (Score:2)
Since when is your excised tumour considered intellectual property?
Re: (Score:2)
Re: (Score:2)
She signed away those rights in exchange for free or low cost health care.
Re: (Score:1)
Everything you need to know. Engrossing. (Score:3)
http://www.youtube.com/watch?v=C0lMrp_ySg8 [youtube.com]
It could have been anyone's cells (Score:4, Insightful)
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: (Score:3)
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: (Score:3)
Re: (Score:2)
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 th
Re: (Score:3)
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
Re: (Score:2)
---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
Re: (Score:3)
Actually, no.
Her cells have shown the remarkable ability to not die out.
Everybody else's seem to.
Re: (Score:2)
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 (Score:4, Insightful)
Re: (Score:3)
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 aroun
Re: (Score:2)
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: (Score:2)
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: (Score:2)
Re: (Score:2)
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
Re: (Score:2)
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: (Score:2)
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: (Score:1)
You assume you have "ownership" of genetic material that's been around for millions and billions of years. You do not.
Re: (Score:2)
Re:It could have been anyone's cells (Score:4, Insightful)
Re: (Score:2)
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: (Score:2)
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: (Score:2, Insightful)
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: (Score:2)
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: (Score:2)
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
Glad that the family did not stop this (Score:1)
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 q
how is her race or social status relevant? (Score:1)
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? (Score:3, Insightful)
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: (Score:3, Insightful)
Re: (Score:3)
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? (Score:5, Insightful)
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: (Score:3)
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 ha
Re: (Score:1)
Re: (Score:2)
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: (Score:2)
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: (Score:2)
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: (Score:2)
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: (Score:1)
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: (Score:2)
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: (Score:2)
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 (Score:2)
But the bigger asshole were the journalist/press which within years revealed the true name of the family. At least the scientist had the forsi
Re: (Score:2)
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 s
Re: (Score:1)
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: (Score:2)
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: (Score:2)
"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.
No, it's not (Score:1)
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: (Score:2)
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
Many People Miss The Central Lesson of HeLa (Score:4, Interesting)
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.
Interesting (Score:1)
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 (Score:1)
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 (Score:5, Interesting)
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!
Misread Title (Score:2)
Re: (Score:2)