The NIH has finally sought consent from the family of Henrietta Lacks

In 1951, Henrietta Lacks — a poor, African-American mother of five — underwent treatment for cervical cancer in the “Coloreds Only” ward at Johns Hopkins University. Before she died, doctors removed cells — without her permission — from her cervix and began culturing them. When she died in October of that year, she left behind a husband, five children, and science’s first “immortal” cell line.

Researchers discovered that Lacks’s tumor cells, which were removed without her permission, could be cultured and kept alive. The first significant use of her cells was in the creation of Jonas Salk’s polio vaccine. They have been used for AIDS and cancer research. They have been fundamental in the development of cloning, gene sequencing, and in vitro fertilization. But the fact that HeLa cells have contributed to so many life-changing — and life-saving, and life-creating — developments over the past 60 years doesn’t change the fact that they were stolen from a poor woman of color who gave no consent to be used as a research subject, even in absentia. And her family only discovered this in the mid-70s, when researchers contacted her relatives seeking still more cells from them to aid in their research.

On Tuesday, the NIH announced that they have been working with Lacks’s family to establish new rules and standards for use of the cells out of respect to the woman from whom they were taken. Under the new rules, access to Lacks’s cells will be made available on an individual basis through an application process evaluated by an NIH panel that includes two representatives of the Lacks family. The full genome will not be published in papers or online and will only be available to researchers; this was in response to the publication of a paper from the European Molecular Biology Laboratory that did just that, leading the family to request removal of the paper out of concern for their own medical privacy. EMBL pulled the paper and apologized.

The family didn’t ask for and will not receive compensation for profitable research findings resulting from use of HeLa cells. (They have sought compensation in the past.) The U.S. Supreme Court recently ruled that naturally occurring genes can’t be patented, but HeLa cells have formed the foundation of a number of medical discoveries that have resulted in patents and profits. The most significant outcome of the NIH’s talks with the Lacks family is the acknowledgement of Henrietta Lacks as the human being without whom those discoveries couldn’t have been made, rather than simply as a source of cells for culturing, testing, and culturing again — and the acknowledgement that using her as an unwitting and unconsenting subject for medical research was unethical and wrong.

Says medical ethicist Arthur Caplan, Ph.D.,

Today, consent is routinely sought today for taking tissue samples. The issue of privacy and how to protect it must now be added to that consent. Acknowledging the contributions achieved by gifts from those who will donate seems a sound policy. And discussions of commercialization, while less pressing due to the Supreme Court ruling barring patents, still ought to be part of informed consent going forward.

Henrietta Lacks allowed medicine to make great strides in the struggle against illness and premature death. Six decades later, her descendants have allowed ethics to make great strides as well.

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111 Responses

  1. Karak
    Karak August 8, 2013 at 2:01 pm |

    I’m sure the book has been talked about here before, but everyone should really read it, especially because it does an excellent job of following the exact path the HeLa cells took into research, and how a small sample taken just to biopsy became, unintentionally, a gross violation. The thing we need to be vigilant of is not malice, but simple thoughtlessness–many of the early HeLa researchers are distressed about how the cells became this thing, this monster that has continued to hurt the exploited Lacks family. The road to Hell is paved with good intentions.

    1. david
      david August 8, 2013 at 10:04 pm |

      im not sure I understand why these cells are a gross violation that hurt the lacks family rather than a miracle that has helped the world and medical science hugely.

        1. david
          david August 8, 2013 at 10:31 pm |

          I meant in this specific scenario was the sample not used to treat her when it could have been? or was it just as i read it a normal biopsy that at that time did not require consent to be used that has now according to the author of the book helped ever single person on the planet. I dont see why her family wouldn’t be amazed and happy that even though they lost their mother some small part of her has helped the entire world.

        2. Computer Soldier Porygon
          Computer Soldier Porygon August 8, 2013 at 11:05 pm |

          I just read this book. It was… I hesitate to say ‘great’ because I feel like that connotes entertainment or something and obviously it’s a really painful read. But it’s a must read.

      1. Henry
        Henry August 9, 2013 at 1:39 am |

        Because the data from these cells is private medical data. I’ll give you a scenario: what if it’s discovered that Lack’s genes show the Lacks family has a propensity to get some horrible disease that strikes in their 40s rendering them incapable of working? What if some great-grandchild shows up for a job interview/applies for health insurance etc.

        What if Ms. Lacks survived her cancer and her medical data was plastered all over the world. Not everyone wants to list every disease they had. I know at least one professional who told his company he had cancer and they proceeded to try and poach all his clients. He is still alive at another company, with his clients.

        david, your points are not mutually exclusive. a miracle can also be a privacy violation.

        1. TMK
          TMK August 9, 2013 at 5:52 am |

          The surviving Lacks family likely share only a very small part of her genome, though.

          Still, given the general public knowledge about genetics, i think the concern you raised would be realistic.

        2. Roboten
          Roboten August 9, 2013 at 10:23 am |

          Are the privacy issues outweighing the scientifical benefits though? Should you be given the right to say no to having research performed on your cells? I’d say no, acually. If researchers were to find a gene in my dna during a biopsy that, say, could possibly be studied to provide a cure for parkinsons, should I be able to say no? I don’t think so. The potential benefint to humanity greatly outweighs the possible privacy issues, and even if they were to profit from it.

        3. TMK
          TMK August 9, 2013 at 12:11 pm |

          IMO, yes, you should.

          Note that it is irrelevant in this case, since Henrietta Lacks is long dead (and this obviously should not apply to descendants).

          In any case, the not publishing thing is weird. I mean should someone be disallowed from publishing their dna because their family shares some of it?

        4. Aydan
          Aydan August 9, 2013 at 1:11 pm |

          @ TMK: Her children would, on average, share 50% of her genome. That percent would get cut in half with each additional generation. That’s not really a “very small part.”

          The ethics of publishing your own genome and its implications for your family members is something that’s under debate in the scientific community. One researcher talks about it here. Sometimes people find out they aren’t biologically related to the people they thought they were biologically related to; sometimes they find out they have elevated risk of a disease or condition. These things impact their biological relations as well.

        5. TMK
          TMK August 10, 2013 at 6:31 am |

          Yes, but since she gave birth to her last child in in 1950, the people that share 50% are by now 60+ years old.

          Still, i agree, i thought they a generation older.

          Also, interesting letter there. Too long to read atm, but thanks.

  2. Barnacle Strumpet
    Barnacle Strumpet August 8, 2013 at 2:08 pm |

    The family didn’t ask for and will not receive compensation for profitable research findings resulting from use of HeLa cells. (They have sought compensation in the past.)

    “makes good”? JCF. Lord knows how much profit has been made off this woman’s genome, and they won’t give the family fuck-all in the way of recompensation. All “they didn’t ask for” and “sought compensation in the past” shows is that they fucked the family over so long that they gave up on getting any financial compensation.

    I’m glad they’ve done something in the right direction but they have certainly not “made good” yet.

    1. tmc
      tmc August 8, 2013 at 4:13 pm |

      Yup!

  3. tmc
    tmc August 8, 2013 at 4:13 pm |

    Not good enough, by far. PAY THEM.

    1. Bagelsan
      Bagelsan August 8, 2013 at 7:19 pm |

      How much? No seriously, how would you price scientific discoveries that were partially based on use of a cell line, in combination with other cell lines and other human research materials?

      1. Barnacle Strumpet
        Barnacle Strumpet August 8, 2013 at 7:44 pm |

        Are you implying there’s no way to value it? Because I’m pretty sure there is. That’s why they licensed it.

        1. Bagelsan
          Bagelsan August 8, 2013 at 7:49 pm |

          Okay, how would you price “cancer research that has happened”?

          I’m not saying they should get nothing, but I’m not clear on what monetary value they could claim exactly. Besides, paying for part of a person can set a bad precedent.

      2. A4
        A4 August 8, 2013 at 8:07 pm |

        Oh yes, I’m sure the issue is that they just don’t know how much money to give them. They’d LOVE to compensate her family, they just can’t for the life of them figure out how much! I mean, imagine trying to put a price on something so abstract! That’s almost like putting a price on something like pain and suffering, which certainly doesn’t happen all the time in US courts.

        1. Bagelsan
          Bagelsan August 10, 2013 at 4:17 pm |

          You’re right, I’m always forgetting that no compassionate and/or POC researchers exist. Despite working with many. How could I forget that getting a degree in science means you lose your soul? Where is my mind lately?

      3. tmc
        tmc August 8, 2013 at 10:11 pm |

        Using black bodies and profiting massively off of their exploitation is the precedent and I’m not okay with it. They don’t need to pay for the line, they need to pay for the THEFT of the line. You want to learn more, read Medical Apartheid and get back to me.

        1. karak
          karak August 9, 2013 at 12:15 am |

          You really, really want to read the book, which really goes into a lot of the moral, ethical, and legal questions about this case. It by no means exonerates the people who profited (it leaves you in tears, actually) but it does tangle with the formal, legal consequences of what happened. It’s very complicated, even now, and I’m not articulate enough to explain it.

      4. Henry
        Henry August 9, 2013 at 1:56 am |

        Well considering you often have to rent a cell line to do research…a % of the rental income would be one way to do it. In fact you can buy a T-Rex (TM) HeLa cell line here for around 1000-10,000 USD depending on the model.

        http://www.invitrogen.com/search/global/searchAction.action?query=HeLa&resultPage=1&resultsPerPage=15&x=0&y=0

        These are souped up modern versions based on the old cell line that do particular things.

        The cheapest HeLa cell line is an ATCC line sold to nonprofits for 200+ USD. ATCC is a nonprofit that keeps and licenses out tissue cultures.

    2. Henry
      Henry August 9, 2013 at 2:06 am |

      Sorry for the double post, but not only was she not compensated, many of her descendants remained poor and many did not even have health insurance/care despite her cell line being sold over and over as part of the multi-billion dollar tissue industry supporting medical research that benefited many others.

      http://www.lacksfamily.com/

  4. SunlessNick
    SunlessNick August 8, 2013 at 4:49 pm |

    Henrietta Lacks allowed medicine to make great strides in the struggle against illness and premature death. Six decades later, her descendants have allowed ethics to make great strides as well.

    I’m assuming he means well, but both these turns of phrase grate anyway.

    1. trees
      trees August 8, 2013 at 7:26 pm |

      As if she and her family had/have any say in the matter.

  5. Kasabian
    Kasabian August 8, 2013 at 9:48 pm |

    Who knows? Maybe eventually the science made possible by her cells will let us apologize to her personally.

  6. Tyris
    Tyris August 9, 2013 at 1:59 am |

    Okay, so, ignorant question caused by most of our oncology-related training having to do with rodents:

    Why have we not stopped using the cells?

    Cancer patients aren’t exactly rare. One of them must be willing to be an informed, voluntary donor.

    1. Henry
      Henry August 9, 2013 at 2:28 am |

      Because they are tough and survive lab conditions, because of experimental controls, once a cell line starts to be used for something, you can better compare experiments if everyone is using the same ingredients.

      There are problems with using HeLa as a human model. Some have suggested they be dropped. http://www.nature.com/news/most-popular-human-cell-in-science-gets-sequenced-1.12609#/b1

    2. Odin
      Odin August 9, 2013 at 12:35 pm |

      HeLa cells are special because they are ‘immortal’ and were in fact the first such cells discovered. Immortal means roughly that so long as you keep them in the right conditions, you can make them divide (copy) as many times as you want — normally cells can only divide a small number of times before they start dying off or start to copy incorrectly.

      So while cancer patients aren’t rare, cancer patients with immortal tumor cells _are_. We’ve since developed other immortal cell lines, but HeLa was the first, and it paved the way for the rest.

  7. BabyRaptor
    BabyRaptor August 9, 2013 at 4:48 am |

    I’m not at all comfortable with the idea of her descendants sitting on the permissions board.

    I don’t see how this is compensation at all. And what if someone wants to study something that these people disapprove of? For example, what if one of them is a pro-forced birther, and the people trying to do the study want to research in vitro genetic testing?

    What happened to the woman was wrong, no arguments. But that doesn’t mean that her great grandkids should have the right to stop medical progress. If you really feel the need to compensate them (I don’t see why they should be compensated, really. If Mrs. Lacks were still alive, I’d be all for it, since they were her cells.) then find some way to do it that doesn’t potentially compromise the work that can be done.

    1. Odin
      Odin August 9, 2013 at 12:54 pm |

      The trouble is that all of this is about more than just the use of HeLa cells. Family medical records (not just Ms. Lacks’s) were made public in the 80s without the family’s consent, which is a violation of _their_ privacy. At another time, some researchers had Lacks family members give tissue samples without explaining why — it was actually to determine if the cell line had been contaminated, but the family members were left with the impression that they were being tested for chances of cancer.

      So at this point, I think it’s reasonable to allow a couple family members to be on a board approving HeLa research in order to have a chance to protect themselves.

      If no harm had been done directly to family members, then it would be a different story.

  8. Sparger
    Sparger August 9, 2013 at 11:14 am |

    So many of you don’t want the family compensated in any way. It was just a black lady. They are still selling her cells to this day. The Lacks family got nothing. It never matters when its just a black.

    1. PrettyAmiable
      PrettyAmiable August 9, 2013 at 2:36 pm |

      Who are you speaking about? I don’t think your statement is consistent with this community, with the possible exception of Bagelsan, but I think her point more has to do with the difficulty of quantifying damages.

      1. tmc
        tmc August 9, 2013 at 3:57 pm |

        I don’t think your statement is consistent with this community

        LOL

        Is that why we have so many black women commenting here all the time? Because this community is so friendly and safe to black women?

        1. Angel H.
          Angel H. August 10, 2013 at 3:22 pm |

          I mean, damn, we can’t even say “This bad thing happens to Black women” without getting our fucking necks stepped on!

    2. BabyRaptor
      BabyRaptor August 9, 2013 at 10:26 pm |

      No Sparger, my mixed feelings on compensating the family have nothing to do with the level of melanin Mrs. Lacks and her descendants had/have.

      It has everything to do with two things: 1) To me, allowing two of her grandkids to sit on a board that reviews permissions to use her cells doesn’t seem like real compensation to me -and- 2) If anyone should have been compensated, it should have been her. They were her cells. Tossing her relations a cookie doesn’t patch up what they did, nor does it really make any sense in my mind. But if it gives them a sense of peace and justice, then it’s not my place to really do anything other than offer my comments and butt out. I’m not related to her, so it’s not my place to cause a huge riot.

      1. BabyRaptor
        BabyRaptor August 9, 2013 at 10:27 pm |

        Ugh, apologies for the bad English in #1. My fingers got ahead of my brain.

  9. Angel H.
    Angel H. August 9, 2013 at 12:43 pm |

    To david, Roboten, and anyone else who wants to argue “B-b-but, science!”:

    If Henrietta Lacks had been a middle-class, white woman we wouldn’t even be having this conversation. Not because everyone would agree that her rights had been violated and that her family should be compensated. It’s because if she had been a middle-class white woman, this would’ve never happened in the first place.

    We talk a lot of good game about “agency” and “consent”, but why is all of that suddenly tossed out the window whenever Black and Brown bodies are concerned? Why is it that Black and Brown bodies are the ones who must be sacrificed for “the greater good”? When are we gonna be “good” enough?

    Yes, she was violated. Yes, her family should be compensated. And yes, they should have a say in how *their* cells are being used.

    1. pheenobarbidoll
      pheenobarbidoll August 9, 2013 at 12:54 pm |

      Also- what’s the problem over asking her? Are you afraid a Back woman wouldn’t understand the benefits of allowing her cells to be used in research? Afraid she’d just be out to get money and then no research would happen because she held her cells as ransom?

      Had they asked her consent, they’d not only have the results, they’d have respected the human life and agency of the woman that contributed.

      Do you think a poor tobacco worker didn’t have any brains for foresight or care for her fellow humans?

      1. Angel H.
        Angel H. August 9, 2013 at 1:39 pm |

        Inorite? She was just a commodity to them. Nothing more.

    2. Odin
      Odin August 9, 2013 at 1:11 pm |

      The modern conversation would be different, yes, and I’m sure many of the abuses in the past wouldn’t have happened (eg, releasing family medical records). And probably the family would be making money off of it now.

      But the original violation — taking the two cell samples without her consent — may well have happened regardless of her socioeconomic status and race, because modern notions of consent and medical ethics are not the ones that were in play back in the 50’s.

      1. Angel H.
        Angel H. August 9, 2013 at 1:39 pm |

        Bullshit. As tmc already pointed out, this isn’t some isolated incident. It’s not even accurate to say that this couldn’t even happen today. (Hello, forced sterilization!)

        1. Barnacle Strumpet
          Barnacle Strumpet August 9, 2013 at 2:25 pm |

          Not bullshit. There are other incidences of disturbing medical experiments at the time on white people as well.

          Some that come to mind were the U.S military’s(lethal, iirc) radiation expirements on their own soldiers, as an example of white males (albeit, likely not class-privileged) who have been subject to it.

          The cognitively-disabled children who won a trip to a science camp where they were given vitamin-enriched cereal to make them extra healthy–did I say vitamin? I meant “radium” or something like that. And by ‘extra healthy” I mean, holy shit those poor kids. That wasn’t the military though–iirc correctly, it was a prestigious university’s doing.

          As was the experiments (again, with deadly substances) on poor pregnant women (who may all have been black, there were several noteworthy cases of different groups of pregnant women being experimented on).

          Race is a factor, as is socio-economic status, and disability, as well as gender, but as far as I can tell, there’s no “if you’re X, you’re safe from this” with the exception probably of class, because rich typically = access to good lawyers, people in high places, and media access.

          Regardless, they were ethically wrong. The people at the time knew they were ethically wrong, which is why they targeted vulnerable people (U.S military persons aren’t what I would typically describe as vulnerable, but like most employees they are vulnerable to their employer), and why the experiments were hush-hush.

          X Fancy University wasn’t trying to get it headlined in the New York Times– “Experimenting on Disabled Kids–For Science!”

          That aside it’s really irrelevent whether it was hunky-dory back then. We recognize with today’s ethics that wrong was done, so compensation for our past sins should be made.

      2. macavitykitsune
        macavitykitsune August 9, 2013 at 1:49 pm |

        But the original violation — taking the two cell samples without her consent — may well have happened regardless of her socioeconomic status and race, because modern notions of consent and medical ethics are not the ones that were in play back in the 50′s.

        Hahaha nope. Rich able-bodied neurotypical skinny cis white men get to have consent and medical ethics. The rest of us are still getting fucked by the medical establishment, thanks.

        1. Li
          Li August 9, 2013 at 3:06 pm |

          modern notions of consent and medical ethics are not the ones that were in play back in the 50′s.

          Hey everyone! Let’s play the a game! I like to call it: “Responding to evidence of horrific experiments carried out by Nazi scientists, in which decade did the Nuremberg Code set out principles of ethical research, including informed consent!”

          If you guessed “In the decade immediately prior to the 1950s,” you are correct.

          Look, I know it’s tough to think bad of poor old contingent whitey, but US medical researchers were fully aware of a number of modern concepts of medical ethics during the 50s (and the 60s and early 70s when the Tuskagee syphilis experiments were still running), they just typically chose to ignore them.

        2. Odin
          Odin August 9, 2013 at 5:12 pm |

          Okay, first of all, taking cells for research without knowledge or consent DID happen to white people, and as late as the 70s. Including but not limited to a white man who after finding out, took it to court and lost.

          This does not magically make what happened to Ms. Lacks okay. It DOES mean that what happened to Ms. Lacks did not ONLY happen because of her race, socioeconomic status, and gender. As Barnacle Strumpet points out, there’s no “If you were X you would have been safe”.

          By “not at play” I meant “not common practice”. Or in other words, taking samples without informing the patient or seeking consent _was_ common practice at the time, at least according to what I’ve read about the history of HeLa. (Sources: various articles and essays over the years whose full citations I no longer recall; Wikipedia confirms for whatever that’s worth) That doesn’t make it right. As far as I’m concerned, that means things were _worse_, not better.

          Third, re: knowing better because of the Nuremberg Code… well, the Nazis also killed people based on disability status, and sexual orientation, and the US as a whole condemned this as evil, so… that means USians in the 50s and 60s weren’t ableist and homophobic, right?

          No, obviously that wasn’t the case, I’m sure we all know. Did ableist and homophobic USians have an excuse for their attitudes and behavior? No, they fucking didn’t. But that doesn’t mean that homophobia and abelism weren’t common in the 50s and 60s (because they were).

          Recognizing that things were shitty in multiple ways in the past is _not_ the same thing as saying things weren’t shitty in the past, or giving a pass to people who did shitty things in the past. And it’s important to recognize the degree to which things were bad.

        3. pheenobarbidoll
          pheenobarbidoll August 9, 2013 at 8:11 pm |

          It’s also important to note when the motivation was racism, and not also have to point out classims and other isms also happened. This case? Happened because she was black.

          But god forbid PoC talk about racism, not classism against poor white people at the same time. At least poor white people, when consent was asked, had an opportunity to say NO without worrying about angry white people showing up to punish them.

        4. Barnacle Strumpet
          Barnacle Strumpet August 9, 2013 at 8:35 pm |

          At least poor white people, when consent was asked, had an opportunity to say NO without worrying about angry white people showing up to punish them.

          Yeah, those orphans and disabled children totally could have said no! Those prisoners who were at the mercy of an unjust prison-industrial complex could have said no without any repurcussions, right? It’s not like they were helpless children or people literally imprisoned against their will. I’m sure those people involuntarily in psychiatric facilities totally felt like they had control of the situation and weren’t liable to anyone’s punishment.

          I’m not even in disagreement with your point, but your little “they could have said no without repurcussion” is so much bullshit I’m surprised you don’t need a drink of water. Don’t minimize how vulnerable people were taken advantage of to try to score points for what you’re saying.

        5. pheenobarbidoll
          pheenobarbidoll August 9, 2013 at 10:49 pm |

          That Strange Fruit is secretly poor and white.

        6. trees
          trees August 9, 2013 at 11:48 pm |

          That Strange Fruit is secretly poor and white.

          Well said. That artful and succinct turn of phrase lays it raw the dynamic on display in this race/class discussion.

        7. shfree
          shfree August 10, 2013 at 12:30 am |

          For crying out loud, can we POSSIBLY have a conversation about the injustice done to a WoC without it turning into “Oh, but don’t forget about the injustices done to white people at the same time! They had it bad too!” That shit is for Spillover, ‘kay? For fuck’s sake.

        8. Odin
          Odin August 10, 2013 at 11:52 am |

          There’s a difference between “but what about the WHITE peoples?” and “this type of violation was common in the 50s regardless of race.”

          When violations happen routinely, even to more-privileged segments of society, we need to recognize it for several key reasons.

          (1) It means there were more victims.
          (2) It means that the less-privileged victims had _even less_ recourse than their more-privileged counterparts. (The man in Moore v. Regents? Lost the case. Despite being white and male and able to afford an attorney. Where do you think _that_ puts Ms. Lacks and the uncounted other poor, black, and/or female victims of these sorts of things? How many vulnerable patients did it happen to that we will never even know about because their cells didn’t lead to a massive research breakthrough? How many families are getting even less justice than the Lacks?)
          (3) It means we are closer to, not further from, an era where medical ethics were routinely ignored — even if the victim wasn’t a specific vulnerable group. That means we have to be more vigilant, because we’ve probably made less progress than we think we have, and it means that vulnerable groups in particular are _more_ at risk than people with relative privilege might be inclined to think.

          When we pretend widespread bad things only happened in a few specific cases, not only are we factually wrong, we’re rosying up the past and erasing victims, we’re scrubbing cleaner the names of past wrongdoing-but-somehow-Respected White Dudes (which then makes it less likely for modern privileged folks to listen to condemnations of those Respected White Dudes)… and we are making it harder for modern victims to find justice and modern accusations to be believed.

          One lesson (of several) that we should take from the story of Henrietta Lacks and her family is that society and medicine are not _at present_ as advanced ethically as we’d like to think. I mean, holy fuck, their medical records were publicly released in the 80s and only now does the family have any chance to protect themselves.

          But if we pretend that the very start of this all ONLY happened because of racism (which lots of white USians think is over now, because, postracial! Obama! Something!) and not because of a widespread shittiness made even worse when intersecting with racism and other *isms, if we only look at the very start and not at some of the later and _still_ ongoing terribleness… then how the fuck are we going to learn that?

        9. Miranda
          Miranda August 10, 2013 at 12:38 pm |

          For crying out loud, can we POSSIBLY have a conversation about the injustice done to a WoC without it turning into “Oh, but don’t forget about the injustices done to white people at the same time! They had it bad too!” That shit is for Spillover, ‘kay? For fuck’s sake.

          Urghhhhh I know. If this were a “what about the menz” instead of a “what about the whitez,” there’d be a lot more rage against the “what about”-ers. If that makes sense.

        10. Barnacle Strumpet
          Barnacle Strumpet August 10, 2013 at 1:11 pm |

          For crying out loud, can we POSSIBLY have a conversation about the injustice done to a WoC without it turning into “Oh, but don’t forget about the injustices done to white people at the same time! They had it bad too!” That shit is for Spillover, ‘kay? For fuck’s sake.

          Well, you and Pheeno and MIranda can head on over there, because you’re the ones talking about “what about the whitez”.

          LOL seriously. Talking about who unethical medical experiments of the time targeted (which includes many marginalized groups) is relevant, as is discussing the commoness (or uncommoness) of certain groups being targeted. I don’t think anyone disagrees that black people, disabled people, and prisoners were the main groups targeted for unethical medical experiments.

          To talk about the way black people were treated re: unethical medical experiments, some contexts of how other groups were targeted is useful. I can safely say that black people were disproportionately targeted because statistically, they made up a disproportionate amount of the people subjected to unethical medical experiments. To say that 7/10s of experimentation victims were black, 2/10s were white, le gasp! I have to mention white people. Shit, there I go again, making it all about white people’s pain.

          By your rules (where we shouldn’t be looking at other groups subjected to unethical medical experimentation) I can’t even say that, because that would be “making it all about white people’s injustice” or some bullshit. I can’t say “targeting prisoners disproportionately affected blacks, because of the racist criminal justice system in the U.S” or mention that the Statesville inmates who were experimented on were made up of 50% black inmates(which certainly does not represent a fair ration, given population patterns at the time)

          Y’all go ahead and pat yourselves on the back though, for adding at least 4 comments specifically about white people to the discussion. Don’t let the door hit you on the ass when you head over to Spillover.

        11. Bagelsan
          Bagelsan August 10, 2013 at 4:14 pm |

          Yes, everyone knows that the medical establishment literally lynched Lacks, making pheeno’s comment incredibly appropriate and accurate. Or, well, they took some cells and violated HIPAA, which didn’t exist yet. Which is liiike lynching. Because we’ve decided that using lynching as a metaphor is cool now, right?

        12. pheenobarbidoll
          pheenobarbidoll August 10, 2013 at 4:57 pm |

          You forgot Indians. There’s a 500 year track record of the US government exclusively experimenting on children and adults, and if they didn’t have a disability, they were given one in order to try and fix it. You can use your legs? Here, we’ll fix that so we can experiment. You’re eating healthy foods? We’ll take that away and replace it with spoiled foods, then we’ll test vitamins on you. Or reduce your calories to almost nothing, so we can study malnutrition.

          That they eventually moved on to some other populations doesn’t change the fact it started with racial groups, who are vulnerable simply by being that race.

          And Bagelsan, lynching happened for simply saying no to a white person. Or looking at a white person. Or being the same color as someone who existed in sight of a white person. POC denying a white person didn’t just mean that individual who said no would face swift punishment. It meant their whole family could die, and even others in the POC community. If I say no, my whole family could be hanging in the tree out front by daybreak is a bit fucking different than if I say no they might punish me.

          To pretend otherwise is crap.

        13. Radiant Sophia
          Radiant Sophia August 10, 2013 at 5:08 pm |

          pheenobarbidoll, it wasn’t just the U.S. government who experimented on indigenous people. Several other major governments did as well, and at least one of them more recently than the U.S. I’m not, by any means, defending the U.S., but it seems a little strange to say the U.S. exclusively.

        14. pheenobarbidoll
          pheenobarbidoll August 10, 2013 at 5:08 pm |

          And when not one but several POC are telling you you’re fucking up, you might want to stfu and listen instead of telling them how wrong they have it, and what you’re saying is different because, reasons.

          We experience that as racism, regardless of your intent or reasons.

        15. pheenobarbidoll
          pheenobarbidoll August 10, 2013 at 5:12 pm |

          it wasn’t just the U.S. government who experimented on indigenous people. Several other major governments did as well, and at least one of them more recently than the U.S. I’m not, by any means, defending the U.S., but it seems a little strange to say the U.S. exclusively.

          Not the US, exclusively, the Indians (Indigenous) exclusively. We were having germ warfare experiments performed on us some 80 odd years before colonization occurred, and it continued,and does to this day.

          But no, I’m not saying the US has the monopoly on that.

        16. Radiant Sophia
          Radiant Sophia August 10, 2013 at 5:28 pm |

          Not the US, exclusively, the Indians (Indigenous) exclusively. We were having germ warfare experiments performed on us some 80 odd years before colonization occurred, and it continued,and does to this day.

          But no, I’m not saying the US has the monopoly on that.

          Sorry, I misunderstood. The most recent example I could think of happened in Canada.

        17. macavitykitsune
          macavitykitsune August 10, 2013 at 5:34 pm |

          Oh, and if anyone wants more recent, more insidious stuff re: whether racism is a major factor in medical experimentation or not, I recommend researching the origins and side-effects of some drugs that are being “donated” to sick people in Asia and Africa by industrialised countries. You probably won’t find much about it in the mainstream media, it’s almost like they don’t ca-

          but of course not, all medical researchers in the history of whiteness have never been racist. We’re the racists for seeing race.

          That said, I do agree with Barnacle and Odin that it’s important to consider other factors when speaking of medical violations as a whole. I just don’t think it’s necessary in this case.

        18. pheenobarbidoll
          pheenobarbidoll August 10, 2013 at 7:45 pm |

          I just don’t think it’s necessary in this case.

          It’s not. But that doesn’t and won’t ever stop people. We’re talking about racism in medical violations, but must stop in order to expand it as a whole so we can include everyone else. So they can show it’s not “just” racism.

          Because that’s so goddamn important.

        19. Barnacle Strumpet
          Barnacle Strumpet August 10, 2013 at 7:48 pm |

          We’re talking about racism in medical violations, but must stop in order to expand it as a whole so we can include everyone else

          No, actually we’ve been talking of medical violations as well, if you’d bother to actually read what other people say (oh, but why would you bother, since everyone you disagree with is only saying it to get laid, after all?)

        20. macavitykitsune
          macavitykitsune August 10, 2013 at 8:09 pm |

          It’s not. But that doesn’t and won’t ever stop people. We’re talking about racism in medical violations, but must stop in order to expand it as a whole so we can include everyone else.

          I dunno, Pheeno, I thought the article was about medical violations in general, with a focus on this case. I don’t read bringing up other victims of medical violations as a derail in the abstract, though I do read “but white people suffered tooooo so it’s not about raaaaace” as a derail.

        21. pheenobarbidoll
          pheenobarbidoll August 10, 2013 at 11:17 pm |

          It is a derail. A racist derail, regardless of intent. And I’m done humoring racists who use it. ( No I do not mean you Mac, just in case you thought I did) Other poc are also pointing it out, but the racists are going to ignore that because I said it too. And yes. I am flat out calling them racists. They can go boo boo into their epillows or spillover as they feel necessary. It’s not as if it’s new.

        22. Radiant Sophia
          Radiant Sophia August 11, 2013 at 12:06 am |

          It’s not as if the phrase “the “Coloreds Only” ward at Johns Hopkins University.”” isn’t in the first sentence. Yes, white people have also been the subject of unethical medical practices. So what, that isn’t what happened here. Her race was obviously a greater factor in her treatment than her social class (or her gender in this case). So why are people trying to shift the conversation?

        23. shfree
          shfree August 11, 2013 at 12:44 am |

          Back after a while away from my computer, and my whole issue was the derail away from the topic of THIS SPECIFIC WoC to “But lookit! White people suffered too!” Put it in terms of examining how all the isms intersect, what fucking have you, but as soon as the word “white” in relation to a person’s ethnic background enters into the conversation which has been initially about a PoC, it shifts the focus away from that PoC, or People of Color, to “But whiiiiiiite peeeeeople”. (That is just how we roll, as privileged white people, we like to talk about ourselves to the point that we don’t even notice we are doing it most of the time.) And then it turns into the usual clusterfuck of a derail that I’m pretty sure every PoC hates to have to see yet again and I know I personally am mighty sick of, even if I still step all over myself should I get so frustrated that I wade in.

          Yes, the conversation about how all of those things-race, class, incarceration status, mental/physical health and how they all related to consent in medical testing, intersect is a good one, but for spillover. At this point, on Feministe, I don’t think you can mention or discuss how something affects white people on a thread dedicated to a PoC, or PoC, without running the risk of derailing the fuck out of it. And that, frankly, isn’t just. And now I’m done here, and I’ll reply to anything else related to this post on Spillover.

    3. matlun
      matlun August 9, 2013 at 1:32 pm |

      If Henrietta Lacks had been a middle-class, white woman [...] this would’ve never happened in the first place.

      That may not be true. It was at the time standard practice to use any removed tissue and organs for medical research without consent. It was at the time not controversial AFAICT.

      Decades later, there was a case in the California court, where it was held that you do not have any property rights to your removed tissue. (It is covered in the book).

    4. Roboten
      Roboten August 10, 2013 at 9:28 pm |

      I can only speak for myself, and I wasn’t talking about this specific case, which I’m nowhere close to be knowledgeable enough on, but the general idea that you should be able to control the research being performed on your cells, which I disagreed with.

    5. karak
      karak August 12, 2013 at 12:45 am |

      That’s untrue, actually–at the time, the hospital was cultiving every interesting-looking cell line (in fact, most medical institutions were doing the same thing with every interesting patient that walked in). The Lacks family was left out of the loop as long as they were because of their color and poverty, most definitely, but if a wealthy white woman had developed that cancer, that cell line would have cultivated and sold.

      I assume this largely because the same thing happened to several white men, some of who were actually living at the time of the exploitation of their unusual cellular/body chemistry, and were righteously pissed when they found out their blood samples were being sold and developed for loads of cash.

      Read the book. You should, and it was written with the permission of the Lacks family and a lot of input, as well as some of the proceeds going towards the family.

  10. macavitykitsune
    macavitykitsune August 9, 2013 at 1:58 pm |

    Today in Oh Okay Then:

    The US is currently trying desperately to get India (and other countries) to stop selling cheap generics to cure cancer and treat HIV/AIDS, among other major diseases, because the all-important Big Pharma Haz A Sadz about not getting to sell a month’s supply of cancer medication at a cost greater than the median Indian annual income. Most of these are sold to African countries, which have already gotten screwed out of being able to produce their own.

    This is being presented as For Important Intellectual Ethics! etc, because saving brown and black lives in brown and black majority countries is less important than American pharmacies getting their bloated profits.

    Y’all (and that same Big Pharma) are currently trying to argue that the Lacks family should be, in so many words, stepping up to do their duty without any kind of compensation.

    This is being presented as For Important Life Savingfulness! etc, because the bodily integrity of black women is clearly less important than saving lives in a white-majority country.

    …I’m just going to be over here, savouring the amazing inspiringitude and freedomfulness that is the USA.

    1. Radiant Sophia
      Radiant Sophia August 9, 2013 at 2:05 pm |

      Mac, while it is true that the entire medical system in the U.S. is, pardon the language, fucked… nope, that’s all I have to say.

    2. EG
      EG August 9, 2013 at 2:13 pm |

      Most of these are sold to African countries, which have already gotten screwed out of being able to produce their own.

      The US, trying to export its shitty, shitty illness industry–why should it be satisfied with fucking over its own ill people (those of us who here who order those cheap drugs because our shitty insurance, if we have any, means we can’t afford them otherwise) when it can fuck over people globally, particularly PoC?

      (Not disagreeing, just emphasizing in agreement)

    3. pheenobarbidoll
      pheenobarbidoll August 9, 2013 at 2:15 pm |

      Yup. For centuries now it’s been our bodies experimented on, our bodies tested, our bodies violated, our lives interfered with all to help white people.

      Asking for consent is a good way to start with the thank yous. And it doesn’t escape our notice that we (thanks to white, European, colonizer meddling what with their slavery, genocide and disease warfare) are often the ones who are suffering from these diseases you’re trying to cure. We’re not fucking stupid. We know participating could mean curing ourselves, family, friends, loved ones, communities so have no fear, we’re not going to say Fuck You Whitey when asked.

      1. Radiant Sophia
        Radiant Sophia August 9, 2013 at 2:39 pm |

        Yup. For centuries now it’s been our bodies experimented on, our bodies tested, our bodies violated, our lives interfered with all to help white people.

        Rich white people. Poor white people are told to go die in a hole.

        1. macavitykitsune
          macavitykitsune August 9, 2013 at 2:43 pm |

          Yes. Also, as I pointed out, the only way to be safe and protected by medical ethics is to be part of the

          Rich able-bodied neurotypical skinny cis white men

          group. Everyone else is dead in the water on one axis or another.

    4. Tyris
      Tyris August 9, 2013 at 7:49 pm |

      Wait, the US is trying this now? After how spectacularly Novartis failed? Do they think it’s going to work any better?

      1. macavitykitsune
        macavitykitsune August 9, 2013 at 8:01 pm |

        Yeah, this administration seems to think it’s the bestest plan in the history of evar. Fucking douchebags, the bunch of them. You’d think they’d have learned from last time, but…

        @EG indeed, right?!

    5. Alexandra
      Alexandra August 9, 2013 at 11:15 pm |

      Oh my god, can I marry this comment? This comment is fucking amazing. I can hear freedomfulness ringing in my ears as I read it.

      1. macavitykitsune
        macavitykitsune August 10, 2013 at 12:52 pm |

        Awww ^/////^

  11. Coraline
    Coraline August 9, 2013 at 2:05 pm |

    Huh.

    I wonder how this would have played out if the descendents of Henrietta Lacks had declined to “consent” to continued use of the HeLa cell line?

    (Oh how nice that that the benevolent scientists finally deigned to ask the ignorant peasants if it was okay for them to continue to profit off of their grandmother’s genetic material.)

    Odds are that the conversation would have been quietly swept under the rug and the HeLa cell line would have continued to be used anyway.

    1. Alexandra
      Alexandra August 9, 2013 at 11:17 pm |

      I (don’t) wonder how much of asking consent was purely performance, anyway. In most material senses, it would have been impossible to stop using HeLa cells, or products of HeLa cells, or ideas that had their origins in the use of HeLa cells… it’s not something where you could have gone backwards in any meaningful way, I don’t think.

    2. Henry
      Henry August 10, 2013 at 5:34 pm |

      Given they were the first immortal cells ever found, they would have been stolen by the researchers. It’s easy to have ethics until you really need something. What better reason to offer people money for the sample?

  12. amblingalong
    amblingalong August 9, 2013 at 11:31 pm |

    I disagree with this.

    Henrietta, the person, was taken advantage of. The violation, and the claim for restitution, were hers. The NIH missed it’s chance to make this right.

    Her descendants getting to say what projects get to use her cells doesn’t accomplish any good at all; it doesn’t address the original injustice in any way, and it does potentially stand in the way of medical advances. I see no upside.

    1. Bagelsan
      Bagelsan August 10, 2013 at 4:10 pm |

      Agreed. If my mom were taken advantage of medically I’d be pissed, but would I decide that was time to make a little extra cash? No, and I wouldn’t expect for myself to be financially compensated. Given some of the sweet sweet meds her sacrifice made possible? Maybe I’d like that, but I’d not expect a chunk of cash.

      1. Henry
        Henry August 10, 2013 at 5:18 pm |

        But her estate is due to cash. Biotech companies made billions selling these cells for research and she got nothing. What better thing to do than give her estate a payout and distribute it to the poor family (that went w/o even medical insurance for years)

      2. A4
        A4 August 11, 2013 at 10:23 pm |

        Seems like a big part of the point is that it does not matter in the lease what you would expect because 1) This isn’t about you and 2) Whatever you say you “would do” is just a big made up theoretical nothing.

    2. Odin
      Odin August 10, 2013 at 5:11 pm |

      It’s not just Henrietta Lacks who was directly wronged, though — her children were used in research without their knowledge, too, as a result, and family medical records were made public. (See, eg, the second paragraph here: http://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-life-of-henrietta-lacks-the-sequel.html?pagewanted=all&_r=0)

      So putting family members on the review board for HeLa cell research allows them to protect themselves.

      1. Henry
        Henry August 10, 2013 at 5:28 pm |

        genomic data is new and it transcends the original “donor” even assuming it was freely given by the original donor, the medical privacy of biological offspring and other biological relations are impacted by that donation. Ethics rules need to take this into account.

  13. Bagelsan
    Bagelsan August 10, 2013 at 4:11 pm |

    Notably not addressed yet, the ethics of selling part of your mother’s dead body to science for money. This lack of monetary gain was probably the only way to avoid setting a precedent for cash-for-kidneys.

    1. Henry
      Henry August 10, 2013 at 5:21 pm |

      Red herring – we do not allow cash for kidneys because a kidney transplant is dangerous to the donor and not a necessary procedure during voluntary treatment of a disease, and we do not want to coerce donors. Cell lines are formed from a few donated tissue samples which would have been voluntarily collected anyway during treatment.

    2. macavitykitsune
      macavitykitsune August 10, 2013 at 5:27 pm |

      Relevant to your comment: even a tiny, solitary, malnutritioned clue as to the difference between making sales and being awarded damages.

      1. macavitykitsune
        macavitykitsune August 10, 2013 at 5:28 pm |

        Also, congratulations on winning Slippery Slope Award of the Week.

        1. Donna L
          Donna L August 10, 2013 at 5:44 pm |

          Exactly. If we recognize the principle that this family deserves compensation for what happened, the next thing you know, people will be allowed to sell their kidneys and intestines on ebay!

        2. macavitykitsune
          macavitykitsune August 10, 2013 at 8:07 pm |

          TBH Donna I find it creepy that we as a society are apparently quite unconcerned about people who commit suicide in order to leave their loved ones their life insurance (even if that’s illegal), but say you want to sell a kidney – keeping in mind that nearly everyone survives the loss of one kidney – and people react as if it’s the omg worst thing in the world. I don’t know about the kidney-sales-shriekers, but if I needed a huge sum of money, I’d rather lose a kidney than my life. But maybe that’s just me. All hail the Church of Kidney!

        3. Donna L
          Donna L August 10, 2013 at 8:13 pm |

          I think there are legitimate concerns about the legalization of that kind of thing ending up being just one more means of exploiting and pressuring POC and people in poverty to sell their organs to benefit — once again — wealthy white people.

        4. macavitykitsune
          macavitykitsune August 10, 2013 at 8:29 pm |

          Oh, definitely, Donna. I’m not saying it’s something I want legalised anytime soon. I just find the way in which people speak of it really bizarre.

        5. Bagelsan
          Bagelsan August 11, 2013 at 8:00 pm |

          Slippery Slope Award? Because I mention that allowing the sale of human tissue might result in the sale of human tissue? God forbid you learn to ski, you might encounter an actual slippery slope.

        6. macavitykitsune
          macavitykitsune August 11, 2013 at 8:25 pm |

          Damages are not sales. Or do you think people awarded damages for the death of their children in, say, a school shooting is setting a precedent for people selling their children to murderous gun nuts?

        7. macavitykitsune
          macavitykitsune August 11, 2013 at 8:28 pm |

          …preemptive apologies for the ableism. I caught it too late to stop it posting.

    3. Barnacle Strumpet
      Barnacle Strumpet August 10, 2013 at 5:49 pm |

      My father looked into donating his body to science when he died to save us the cost of burying him. It’s pretty awful knowing your loved one is going to lay in an unmarked hole somewhere. Superstitious nonsense maybe, but it doesn’t change the feeling.

      Henrietta Lacks didn’t even have a tombstone until a few years ago. Yeah, I think a few bucks could have been coughed up so that someone who’s cells saved so many lives could have a headstone and the other memorial customs that typically honor the dead.

      There are a lot of people in the U.S lining their pockets unfairly who have done no good and who’s ancestors have done no good. It’s all well and good to say “she’s dead, her descendants have no right to that money” but the whole “we can do no good for her, make up no ills to her, because she’s dead” is nonsense to me. A lot of people just want their kids and grandkids to prosper and not have to go through the struggles and indignities they did.

      Do you really think she’d say “No, I don’t want my kids to have the money to finally bury me appropriately and keep themselves healthy, maybe not have to worry about bills or paying for the kids’ education”?

      1. macavitykitsune
        macavitykitsune August 10, 2013 at 6:03 pm |

        No, you don’t understand, once someone dies, their opinions are retroactively purged. Someone who’s dead could never have wished for anything while still alive that might be applicable after death. Nope nope.

        1. amblingalong
          amblingalong August 12, 2013 at 1:19 am |

          No, you don’t understand, once someone dies, their opinions are retroactively purged. Someone who’s dead could never have wished for anything while still alive that might be applicable after death. Nope nope.

          …I actually agree with your sarcastic point. I don’t think there’s any valuable public policy benefit to considering what someone who no longer exists would have wanted.

        2. Radiant Sophia
          Radiant Sophia August 12, 2013 at 1:31 am |

          …I actually agree with your sarcastic point. I don’t think there’s any valuable public policy benefit to considering what someone who no longer exists would have wanted.

          Fine, when you die, I will take everything you owned.

        3. Donna L
          Donna L August 12, 2013 at 2:38 am |

          I don’t think there’s any valuable public policy benefit to considering what someone who no longer exists would have wanted.

          A rationale no doubt shared by several generations of Swiss bankers and French railroad executives.

        4. Radiant Sophia
          Radiant Sophia August 12, 2013 at 3:19 am |

          Sorry ambling, what I said was harsh, but I do hope you can see what is on the other side of the (metaphorical) door you are opening. What I said, though, was kind of jerkish.

        5. amblingalong
          amblingalong August 12, 2013 at 9:03 am |

          Fine, when you die, I will take everything you owned.

          Well, the people I gave my stuff to might mind, and they’d presumably still be alive.

          But if I had a bunch of possessions and died without entrusting them to anyone living? The idea of someone coming and helping themselves doesn’t really bother me. I have no instinct to hoard Pharoah-style.

        6. amblingalong
          amblingalong August 12, 2013 at 9:06 am |

          What I said, though, was kind of jerkish.

          No worries- the idea actually didn’t bother me at all.

  14. Lyndsay
    Lyndsay August 11, 2013 at 2:23 am |

    CBC Radio 1 talked to the author of the book. Very interesting. She said the family still has no health insurance after all the profit made from these cells.
    Also when scientists obtained genetic information from her children a few decades ago they thought they had consent but didn’t realize that the only type of cell her children had heard of was a jail cell so they were very confused about what the scientists needed from them.

  15. Funty
    Funty August 14, 2013 at 11:41 am |

    More people have heard the name Henrietta Lacks than of any of the guys who didn’t tell her about the biopsy.

    For a lot of these dudes, being a big name scientist with big name scientific papers, is quite a big thing.

    And they’ve all been kicked in the posterity by some black chick.

    Nice one.

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