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Henrietta Lacks

HungryJoeHungryJoe
edited May 2011 in Flamewars
Henrietta Lacks was treated for cervical cancer in 1951. The doctors took some of her cells without her consent for research purposes. The cells and cells grown from them were the basis for some significant medical advances. Along with those medical advances, significant wealth was generated from Henrietta's cells, but none of her family members even knew that the cells existed until the 70s. There are a few million metric tons of this lady's cells still living in labs today.

What do you think about this?
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Comments

  • AprecheApreche
    I have absolutely no problem with it whatsoever. See thread on organ donation.
  • HungryJoeHungryJoe
    This lady's family can't afford the health insurance necessary to take advantage of some of the many medical advances based on research done with this lady's still living cells, which were taken from her without her consent while she was still alive. Does that not seem just a little odd to you?
  • AprecheApreche
    edited May 2011
    This lady's family can't afford the health insurance necessary
    Health care is fucked up, and that's a completely separate issue.
    some of the many medical advances based on research done with this lady's still living cells
    Advances which are so great in their benefit to all humanity that they outweigh an insane amount of harm, if there was any.
    which were taken from her without her consent while she was still alive
    She went to the doctor and consented to treatment, including a biopsy. Once a doctor takes your cells, they are just a lump of cells. They should be able to do with them whatever they wish, especially if it is medically beneficial. Assuming, of course, that they also do the testing that they said they would do.

    The only problem is why we know this woman's name? Were is the doctor-patient confidentiality? Everyone knows this woman's real name and her whole medical history. I guess it didn't exist, especially not for African American women, in the late '40s. Nowadays if this happened, I don't think you would hear about the person they came from.
    Post edited by Apreche on
  • MrRobotoMrRoboto
    This lady's family can't afford the health insurance necessary to take advantage of some of the many medical advances based on research done with this lady's still living cells, which were taken from her without her consent while she was still alive. Does that not seem just a little odd to you?
    Did her cells have something unique? or really special? could the scientists behind the work do the same experiment with cells from another person?
  • AprecheApreche
    Did her cells have something unique? or really special? could the scientists behind the work do the same experiment with cells from another person?
    They're incredibly unique.
  • HungryJoeHungryJoe
    which were taken from her without her consent while she was still alive
    She went to the doctor and consented to treatment, including a biopsy. Once a doctor takes your cells, they are just a lump of cells. They should be able to do with them whatever they wish, especially if it is medically beneficial. Assuming, of course, that they also do the testing that they said they would do.
    That's the point, you crazy troll. They didn't just take a biopsy. They took two samples sets of cells that she didn't consent to have taken.
  • RymRym
    They took two samples sets of cells that she didn't consent to have taken.
    Honestly? No harm, no foul.
  • AprecheApreche
    They took two samples sets of cells that she didn't consent to have taken.
    Honestly? No harm, no foul.
    I know right. How laughable would it be if you saw someone going to the doctor and saying "Doctor, I want to file a complaint. You removed too much cancer from me!"
  • HungryJoeHungryJoe
    They took two samples sets of cells that she didn't consent to have taken.
    Honestly? No harm, no foul.
    I know right. How laughable would it be if you saw someone going to the doctor and saying "Doctor, I want to file a complaint. You removed too much cancer from me!"
    That shows how little you actually read of the review. They didn't take only malignant cells.
    This lady's family can't afford the health insurance necessary to take advantage of some of the many medical advances based on research done with this lady's still living cells, which were taken from her without her consent while she was still alive. Does that not seem just a little odd to you?
    Did her cells have something unique? or really special? could the scientists behind the work do the same experiment with cells from another person?
    Actually, her cells lived and grew much better than most other cell samples, so yes, her samples were unique.
  • RymRym
    That shows how little you actually read of the review. They didn't take only malignant cells.
    And was any harm caused to her physically in doing so?
  • MrRobotoMrRoboto
    edited May 2011
    I guess like copyright, you are the owner of your own genetic code, you'd definitely sue a doctor if they made 50 clones of you for work in porn/prostitution. If her cells have something special about them that were the catalyst for the research to be successful, then I do believe she should have been informed about it and probably compensated like any other test subject, now, I'm not talking about millions of dollars, just the $100 or $200 they would probably offer anyone to test drugs/donate blood or stuff like that.
    Post edited by MrRoboto on
  • lackofcheeselackofcheese
    edited May 2011
    I guess like copyright, you are the owner of your own genetic code
    Why?
    you'd definitely sue a doctor if they made 50 clones of you for work in porn/prostitution
    You could probably also sue if they used CGI to make a near-exact likeness of you in a porn movie, but that's not really to do with your genes.
    Post edited by lackofcheese on
  • WindUpBirdWindUpBird
    edited May 2011
    That shows how little you actually read of the review. They didn't take only malignant cells.
    And was any harm caused to her physically in doing so?
    Define "harm."
    I guess like copyright, you are the owner of your own genetic code
    US court precedent says you only own cells or DNA as long as they are part of your body. Also, sequences unique to your code can be patented by just about anyone.

    I myself plan on patenting my entire genome and relentlessly renewing said patent just to prevent situations like this.
    Post edited by WindUpBird on
  • MrRobotoMrRoboto
    I guess like copyright, you are the owner of your own genetic code
    Why?
    You are right, you could argue it belongs to your parents.
  • WindUpBirdWindUpBird
    edited May 2011
    I guess like copyright, you are the owner of your own genetic code
    Why?
    You are right, you could argue it belongs to your parents.
    Not really. Recombination and mutation does make it unique from your parents. However, that doesn't mean that you necessarily "own" it, as much as I disagree with the assertion that you don't.
    Post edited by WindUpBird on
  • lackofcheeselackofcheese
    I guess like copyright, you are the owner of your own genetic code
    Why?
    You are right, you could argue it belongs to your parents.
    Not really. Recombination and mutation does make it unique from your parents. However, that doesn't mean that you necessarily "own" it, as much as I disagree with the assertion that you don't.
    Why should you own it?
  • WindUpBirdWindUpBird
    edited May 2011
    DNA is an identification metric these days. If one's DNA is public-domain, and someone gets that sequence, synthesizes it, and inserts it into sperm or blood cells using SCNT, you can be framed for a crime with alarming ease. It's the same reason my fingerprints aren't public domain.
    Post edited by WindUpBird on
  • MrRobotoMrRoboto
    edited May 2011
    I guess like copyright, you are the owner of your own genetic code
    Why?
    You are right, you could argue it belongs to your parents.
    Not really. Recombination and mutation does make it unique from your parents. However, that doesn't mean that you necessarily "own" it, as much as I disagree with the assertion that you don't.
    Why should you own it?
    Because you can be held accountable because of it, be it DNA evidence in a crime scene, etc. You should have the right to limit as many people as you wish to access your DNA.

    EDIT:Took way too much time to hit the publish button <_
    Post edited by MrRoboto on
  • Special ASpecial A
    Its nice that a lot of good resulted from the apparently common practice of taking her cells without her consent, and based on the commonplace nature of that practice I think the question of compensation due to the family now is moot. However, it does raise an interesting problem in the form of gene ownership. This shows that without oversight and without legal precedent to the contrary, those of means will use those means to their advantage without voluntarily compensating the people who made their advances possible.

    I think a cool thing to do would be to create a gene rights licensing policy for people to use. For example, it could surrender the legal right to your genes to a common license upon your death, provided that they are used for defined purposes like non-profit research. For-profit research could buy genetic rights under specified guidelines, and it would protect the researchers and subsequent companies that utilize the research from financial liability to the family or individual beyond the initial purchase of gene rights.

    Just spitballin' here.
  • lackofcheeselackofcheese
    DNA is an identification metric these days. If one's DNA is public-domain, and someone gets that sequence, synthesizes it, and inserts it into sperm or blood cells using SCNT, you can be framed for a crime with alarming ease. It's the same reason my fingerprints aren't public domain.
    Then that just means DNA is going to be increasingly less reliable as evidence in the future. A mere intellectual property law with regards to your DNA sequence isn't going to stop someone from framing you, so I don't think it's particularly useful legally.
  • Luke BurrageLuke Burrage
    "If anyone wants to help out her family because they feel they are owed something, but the medical research community aren't paying up, they can always set up and donate to a charity!" - Libertarians.
  • DiddgeryDiddgery
    Apparently the cells aren't even compatible with human cells anymore.
  • Zack PatateZack Patate
    edited May 2011
    Also, sequences unique to your code can be patented by just about anyone.
    Which in turn has brought a bunch of farmers into ruin because Big Company #0382 patented a gene sequence they discovered and then sued everyone in he neighbourhood because nature spread that sequence around. There's no good reason to allow patenting of genetic sequences. The idea alone should ring bells that oh wait, this is the USA, more people will suffer from an idea this retarded. But those bells are clogged up with wads of cash.

    EDIT: Also, genetic evidence, like fingerprint evidence, is already as useful as a witness that was on the other side of the building.
    Post edited by Zack Patate on
  • TheWhaleSharkTheWhaleShark
    EDIT: Also, genetic evidence, like fingerprint evidence, is already as useful as a witness that was on the other side of the building.
    And, uh, you're basing this on what exactly?

    The real problem with the HeLa case is that it represents a gross violation of trust between patients and the medical community.
  • WindUpBirdWindUpBird
    edited May 2011
    Which in turn has brought a bunch of farmers into ruin because Big Company #0382 patented a gene sequence they discovered and then sued everyone in he neighbourhood because nature spread that sequence around. There's no good reason to allow patenting of genetic sequences. The idea alone should ring bells that oh wait, this is the USA, more people will suffer from an idea this retarded. But those bells are clogged up with wads of cash.
    Implying I was saying that patenting sequences should actually be allowed. I just said that it is indeed possible to patent a sequence and thus "own" a given gene.
    EDIT: Also, genetic evidence, like fingerprint evidence, is already as useful as a witness that was on the other side of the building.
    Lawl. I'm going to have to ask for some evidence for that claim. You ever run a PCR, pal? Are you aware of the accuracy with which we can positively identify a suspect's DNA after its been found at a crime scene and s/he's been compelled to give a DNA sample? I've run PCRs that turned up errors due to the fact that the samples we were trying to amplify were too pure. You haven't the slightest fucking clue what you're talking about.
    The real problem with the HeLa case is that it represents a gross violation of trust between patients and the medical community.
    This. HeLa is the reason every single doctor should be compelled to take a course not just in medical ethics, but in bioethics as well, before board certification.
    Post edited by WindUpBird on
  • HungryJoeHungryJoe
    The real problem with the HeLa case is that it represents a gross violation of trust between patients and the medical community.
    This. HeLa is the reason every single doctor should be compelled to take a course not just in medical ethics, but in bioethics as well, before board certification.
    Please explain this further. Some people who have posted in this thread apparently think that, if a person goes to a doctor for treatment, they've consented to whatever the doctor decides to do with them.
  • WindUpBirdWindUpBird
    I can do that pretty simply. When you go to the doctor's office, you're given a stack of papers to sign, and once every couple of years (the form is valid only for a certain amount of time), you get a sheet that explains the HIPAA accords, which explains what you do and do not have a right to know. Basically, under the law, you have a right to any and all information about your visits: lab results, x-rays, doctor's notes, everything. The problem is that people don't ask what's being taken or done, even though they have the right. Furthermore, if you do ask, and your doctor says "Well, we're taking out a tumor and some healthy cells," unless you have expressly signed documents that say that it is no longer your right to know what happens to those samples, you can ask what purpose they're being taken for. If you dislike what you hear, you can refuse.

    Basically, the Doctor-Patient relationship is just that: a relationship. And as long as you don't demean your doctor or present a liability like Maureen Dowd suggests you do (PROTIP: Even the best doctor will dump you for demanding that you watch him wash his hands; its sets off alarm bells that you're willing to blame the doctor for absolutely anything), you're within your rights to work with your doctor to determine the nature of what's being done and how it's being done in such a way that is informational to you but provides a healthy work environment for him.
  • Kate MonsterKate Monster
    edited May 2011
    While I agree that the donated tissue was forfeit, I also think that the family should be given a settlement. Massive profit has been made and it would be nice to share a bit of that wealth with people that are probably genetically predisposed to cancer. Generosity doesn't need a reason.
    And as long as you don't demean your doctor or present a liability like Maureen Dowd suggests you do (PROTIP: Even the best doctor will dump you for demanding that you watch him wash his hands; its sets off alarm bells that you're willing to blame the doctor for absolutely anything)...
    There are signs up in hospitals instructing patients to ask their doctors, nurses, and caregivers if they have washed their hands. It makes a huge difference in the spread of disease and is being encouraged by the medical community. No one needs to be demeaned, just ask politely. Also, quite frankly, if a doctor is that put off by a simple inquiry, then he/she shouldn't be dealing with the public in general on any level. People need to be willing to reasonably question medical professionals and most medical professionals encourage it. My PCP specifically asks patients to write out a list of questions before they come in for a visit so that they don't forget anything they wanted to ask about.
    Post edited by Kate Monster on
  • AprecheApreche
    While I agree that the donated tissue was forfeit, I also think that the family should be given a settlement.
    Why? What harm was done to the family? A lump of cells was removed from a long-dead relative. Whether those cells were removed or not, or what happened to those cells, had absolutely no effect on that family whatsoever positive or negative. Why should they deserve a pile of money? Where would the money even come from? The doctors involved are also long dead.
  • RymRym
    My PCP specifically asks patients to write out a list of questions before they come in for a visit so that they don't forget anything they wanted to ask about.
    My PCP makes me kill people.
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