Read this: The Immortal Life of Henrietta Lacks

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58 Responses to “Read this: The Immortal Life of Henrietta Lacks”

  1. polarized_range says:

    Actually, at least in California the patient has a cause of action against the doctor if he/she is not informed of all the possible uses of his/her tissue. See Moore v. Regents of the University of California, 793 P.2d 479 (9th Cir. 1990). Additionally, my roommate developed cell lines from cancerous cells last year at Brown and always had them sign a consent form.

    @2, At least in the Reagent’s case the record shows the doctor/school got over 400k, and the doctor received stock and was taken on as a consultant.

  2. Phrosty says:

    I’m not really seeing what the fuss is about. Henrietta is dead, so it’s not like she’ll be ‘needing’ those cells. Furthermore, I don’t believe the family deserves any financial compensation. If Henrietta were alive, then SHE might be entitled to said compensation. It’s HER cells. Yet even then, it’s not exactly intellectual property, is it? To me, it sounds like ‘down-on-their-luck’ folks scrambling like desperate mice to try and snatch up anything that might resemble a freebie. But what do I know; I’m just an asshole.

  3. eeblet says:

    Is there a missing bit of information here? Perhaps cultural or religious? I certainly know a lot of religious people who really have an issue with the idea of organ donation, etc. If you have a more scientific view of the world, it seems like no big deal, or even an awesome thing, that your grandma has posthumously saved lived, but I could see some people feeling that something sacred has been violated.

    Regardless, it’s certainly a cruel irony that HeLa’s descendants lack health care. I think the foundation maybe should spend half the money & effort lobbying for passing universal coverage.

  4. Anonymous says:

    Well, on the topic of Henrietta Lacks, be sure to see Adam Curtis’ documentary, The Way of All Flesh ( http://goo.gl/KSCL ), it focuses less on science and the pathos and more on telling the larger story.

    Trivia :
    Hela is one of the possible name of the nordic goddess Hel, daughter of Loki and ruler of the underworld.
    Pandora’s Box is the title of one of Adam Curtis first documentary (see comment #2).

  5. Anonymous says:

    If I tattoo a CC license on my forehead (No reuse for Mad Scientists, all other have at it.), will that clear up of any rights issues?

  6. theultramusicgeek says:

    Personally, I would like to be told if my tissues or genetic material were to be used for research, but past that, I don’t want constant calls about my cell line if one develops. Just tell me if you’re going to destroy my waste or sell it for medical research. It’s stupid to expect money for material thrown away or not wanted (such as cancer cells), but to not even be told if my DNA is used for reaserch would pss me off. I would give my consent if it were to be used and expect no financial compensation or constant updates, but don’t leave me in the dark about what happened to my personal genetic material. That’s all I really care about.

  7. mandyhallmedia says:

    Australian musician/songwriter Mal Webb wrote a song about this called “Helen Lane”. You can see the lyrics here http://malwebb.customer.netspace.net.au/hela.html or listen to a bit on iTunes http://itunes.apple.com/au/album/helen-lane/id214990246?i=214990442 . It’s a great song.

  8. Tom Hale says:

    I had my blood tested several times over a year after I got a needle stick with unknown blood while working on an ambulance. A few years later, long after all my blood tests were over -all negative thank goodness, I was contacted by a lab about my blood. The lab was totally unrelated to the ones that did the original testing. I wondered what the heck were they doing w my blood. Apparently they can do whatever with your blood after they’re finished with their initial tests.

  9. hijukal says:

    Having a simple checkbox with the option “Don’t use my body parts for further research, thanks” at the bottom of a form when getting tests done is too difficult? Opt out would seem better in this case to me.

    Then again, I wonder what percentage of the population would still opt out.

  10. Anonymous says:

    Before people get too excited about their medical samples falling into the wrong hands…

    This is not the 1950s. As someone who does research using human samples occasionally, I can tell you that under no circumstances can you do this without the patient’s consent today. To do anything with human samples you have to describe the protocol, the scientific questions you intend to answer, and submit this to an Institutional Review Board (IRB) together with the patient consent form you intend to use. You can never publish any scientific findings resulting from human specimens in any respectable journal without an authorization number issued by the IRB upon approval.

    That being said, HeLa cells are a standard human cell line in use world-wide for many decades. The fact that these samples were collected without the benefit of a modern medical review and Henrietta’s consent does mean that a wrong has been done, and should be rectified. I’ve made a donation to the Henrieta Lacks foundation because I’ve personally scientifically benefited from this cell line, and I would urge all scientists to do the same. Those who have benefited financially should contribute commensurately. The fact that Henrieta’s offspring don’t have access to the best health care modern medicine can provide is shameful.

    • Maggie Koerth-Baker says:

      My understanding from reading Skloot’s book is that there is no legal requirement to inform patients that their samples are being used for a specific study…rather, part of the forms you sign at the doctors’ office say that your samples might be used someday, and by signing you’re OK with that.

      If I recall correctly, Skloot says that NIH funded studies have stricter rules, but otherwise that general form is all the consent you need. Which, on the one hand, yes it’s consent. But on the other hand, do most people know that they’re consenting to anything like this when they sign those forms? Could they get medical care without consenting?

  11. BookGuy says:

    Interesting topic. When reading the article, at first I thought, “Well, of course the family should get compensation,” but on further thought, I’m not sure. I mean, if some blood samples from me helped cure Alzheimer’s, that would be awesome, but it’s not like someone would have cheated me because *I* was going to do that myself and planned on making gains in terms of fame or finance because of it.

    Sure, I wouldn’t want someone to make a race of Evil Super BookGuys with my DNA without my knowledge or consent, but we’re talking about researching diseases here, not evil. (Not to say that somebody couldn’t do both good and bad with it, but that aside…)

    Does it have anything to do with a sense of “ownership” over biological materials we leave behind? I leave my long, luscious hair all over the place. Are blood cells really different?

    I’m not really making an argument, just asking for others’ thoughts.

    • Anonymous says:

      Hey BookGuy,
      I don’t know if this makes a difference to your statement, but I have read this book and two things come to mind. 1. They didn’t ask her if it was okay to take the samples, they just took it without telling her they did so. Seems a bit different than someone willingly donating some samples to science. 2. It seems a bit ironic that although Henrietta’s cells are fueling science her own children can’t afford health insurance.

  12. Nelson.C says:

    I don’t know if it’s mentioned in the book, but I recall an article telling how HeLa cells were once the bane of cancer researchers as they grew too well; a cell wafted on stray air currents would land in the petri dish of another cell line and outgrow the original culture. And this happened a lot, so much so that there was barely a lab in the world that wasn’t growing HeLa cells, thinking that they were cells from local patients or different cell lines bought from suppliers.

  13. Anonymous says:

    My problem with the use of my tissue, cells, blood, is actually one of privacy. I don’t want my name attached to my cells. You can use them for any nefarious purpose you like, but please keep it anonymous.

  14. fxq says:

    “…Our bodies are our individual property. In a sense, bodily ownership is the most fundamental kind of ownership we know. It is the core experience of our being. If the courts fail to acknowledge this fundamental notion, their rulings will be invalid, however correct they may seem within the logic of law.

    That is why when an individual donates tissue to a doctor for a research study, it is not the same as donating a book to a library. It never will be. If the doctor or his research institution wishes later to use that tissue for some other purpose, they should be required to obtain permission for this new use. And so on, indefinitely. If magazines can notify you when your subscription runs out, universities can notify you when they wish to use your tissues for a new purpose.

    We are told this is onerous to medical research. The reverse is true. If universities do not recognize that people retain a reasonable, and emotional, interest in their tissue in perpetuity, then people will not donate their tissues for research. They will sell them to corporations instead. And their lawyers will refine documents that forbid the universities to use so much as a blood test for any purpose at all, without negotiated payment. Patients are not naive and neither are their attorneys.

    The cost of medical research will increase astronomically if physicians and universities continue to act in a high-handed manner. The true social good, therefore, is to enact legislation that enables people to maintain disposition rights to their tissue, forever.

    We are told that a patient‘s interest in his tissues, and his right to privacy, ends at death. That, too, is outmoded thinking that must change. Because the descendants of a dead person share his or her genes, their privacy is invaded if research is done, or if the genetic makeup of the dead person is published. The children of the dead person may lose their health insurance simply because contemporary laws do not reflect contemporary realities…”

    — Michael Crichton, Next

  15. fencesitter says:

    I guess there’s no such thing as a GPL for tissue/organ donors, is there? Well, as it relates to research. I wouldn’t want strings attached to transplants.

  16. bogusphotographer says:

    Also a link to the Adam Curtis Docu on the Internet Archive:

    http://www.archive.org/details/AdamCurtisTheWayofAllFlesh

    Fascinating story.

  17. rrh says:

    Nina Paley made a cartoon about this, didn’t she?
    http://www.youtube.com/watch?v=djVaJN0f0VQ

  18. ShaneAH says:

    I’m not so sure Henrietta’s relatives should be making money from this. It’s not like a deceased author’s family reaping royalties. Henrietta had no intellectual input into creating the cell line that bears her name. And none of her descendants carry the genes that make the line unique: those were de novo mutations in the original tumour.

  19. Anonymous says:

    The fact that HeLa’s didn’t even know about her contribution to medical science blows my mind. I do research at a public children’s hospital in Australia and we are not allowed to take bodily samples (plasma, urine, hair) for testing or storage without informed consent from a parent/guardian, AND informed assent from the child. Furthermore, when the child turns 18, every attempt has to be made to contact them to gain consent as an adult. If they can’t be found, the sample is destroyed, no question. This probably has a lot to do with HeLa’s legacy.

    If the patients have an interest in the results of the research, we do try to communicate the results. They hardly ever approach us though; we could probably do more to reach out to them.

  20. Zbohannan says:

    Two things: first, it bears mentioning that the HeLa cell line may be derived from human cells, but once it started growing in a dish, it was no longer really human because it was selected to grow in a dish rather than function as human cervical tissue. If we can take media, remix it, and then republish it as an original work, then there’s very little difference between that concept and that of deriving cell lines from human tissue. Although there could be a philosophical difference between ideas/media and meaty bits, depending upon beliefs.

    As to the issue of biological samples, there are generally two ways to get them. One is to ask permission and take them from the donor with use restrictions based upon the donor’s wishes. Given the tortuous nature of scientific research, this could most certainly delay discovery by postponing a procedure on time-sensitive cell lines (not all derived cell lines last forever; they can often “crash” for various reasons). As a consequence, most researchers try to avoid this method. The other, though it is often acknowledged as a loophole, is to harvest samples from “medical waste,” which includes extra blood from tests and even things like placentas. Though it offers more freedom to researchers, the only way this should be possible is if it is scrubbed of any and all identifying information. There may come a day when every human’s genome is sequenced, but until that time, it’s really quite difficult to find a sample donor unless there’s a leak in sample information security.

    • Beelzebuddy says:

      Damn, beat me to it. I need to get out of the habit of letting a thought stew for a while before submitting it; the process is too slow to keep up with you kids and your blogging.

  21. Elrohir says:

    @12 Crichton is a nut who never seems to see anything good in scientific progress. Every one of his stories is based on science going awry in some horrible way.

    Hardly the kind of guy you can expect any sort of balanced reaction from.

  22. Oaklander says:

    I’m truly dismayed by the negative characterizations of the Lacks family and relative dismissal of the humanity of Henrietta Lacks in many of the comments. Comments that seem to be made by those who haven’t read the book and who are unfamiliar with the complicated relationship between African-Americans and the medical and scientific communities.

    If you read the book you will learn that the Lacks family was less interested in compensation than they were in having the knowledge and understanding of what happened to their mother as she suffered through cancer and the true meaning of her involuntary contribution to science. You might understand why people who are so alienated from and often abused by the scientific community might find it difficult to simply feel pride in their ancestor’s contribution. Why they might resent what the medical community did to their mother and yes, why they might even want compensation.

    I just finished the book and it is a remarkable piece of work. I think Skloot did an enormous justice to the Lacks family and Henrietta by telling their story.

  23. Anonymous says:

    how ironic that a poor black american woman die’s they steal her cells grow them grow rich off them and her family still live in poverty in that great country they stole off the indians . and health care cost so much that her family would probably see a ambulance drive pass them in event of a accident what a wonderful place

  24. Anonymous says:

    I believe if her identity was was known to the public back then there would have been a massive push-back in the use of the medicine that came from her cells. as far as the money…we need to look at the drug companies raking in billions on the tail end of the research.

  25. Anonymous says:

    “The samples are kept for research, on the off chance that a part of you might someday be interesting to science. You’ll likely never know for sure, though, because nobody is under any obligation to tell you about it.”

    That doesn’t sound true.. most countries (i hope) have legislation that would make storing your samples illegal. I know my country does. I suspect the author is assuming everyone reading lives in the same country as he/she does.

  26. FutureNerd says:

    This has nothing to do with human rights and dignity.

    If someone uses data about me against me, I start to be concerned. If someone claims an exclusive right to use information I’m carrying in my DNA, I’m concerned. Henrietta Lacks’ cells were not used against her. No one demanded she pay royalties for her own cells. No one violated an agreement with her. For her, or anyone, to spent a second considering such an agreement would have been a waste compared to the ultratiny chance that it would have benefitted her or her heirs. To raise a public outcry expecting such pointless agreements to be made standard is a travesty of the notion of rights.

    Rights are not about jealously tollboothing every tiny chance of benefitting someone else. My dignity does not suffer from others’ profit. Rights are about self-directed choice and freedom of action. There is no right to be spammed with sign-up forms for every possible astronomically unlikely lottery.

    Lacks did have the right to raise the issue before and during her treatment. If she and her doctors had made any agreements, she would have the right to expect them to be respected. It’s not because she was a poor black woman surrounded by rich white male doctors that such an insane idea didn’t occur to her.

    Nelson C # 34: Yes! HeLa is a new, single- celled species that descends from human beings! I love imagining that it has escaped the labs entirely and is adapting to new niches in ponds, freight cars, compost heaps, starfish guts, etc.

  27. Anonymous says:

    Someone mentioned this in the thread but misidentified the author of the first book on this topic. It takes a hard look at the science and the ethics (while Skloot connects the reader to the people at the heart of the matter: Henrietta and her family). The first book is called “A Conspiracy of Cells,” by Michael Gold. There are some copies still available.

  28. Anonymous says:

    I think that finding out about your grandma and her cells in that manner is disturbing and sounds like science fiction . At the very least her family should have received some notification or be asked permission to use Mrs . Lacks cells in that manner . The doctors at John Hopkins who cultivated the cells forgot they belonged to a woman with feelings and family . The hair on the back of my neck stood up after I read her family cannot even afford healthcare . I want to read the whole book now .

  29. arikol says:

    I have absolutely no problem with these (or my) cells being used to further human understanding and/or save lives.
    Additionally, when I’m dead I don’t really have a need for those cells for personal use. Furthermore, if my cells turn out to have some interesting genetic defect which can be cured due to the research done then that is something that can directly benefit my children or their children.

    Which I think is just great!

    Doctors/scientists/management getting paid while working with those cell cultures seems logical to me, and I don’t really care about not-for-profit vs for-profit. Just do good science.

  30. MITTZNZ says:

    It’s out of print, but if you can get your hands on Michael Goldman’s A Conspiracy of Cells you should.

  31. Beelzebuddy says:

    This situation is intriguingly analogous to intellectual property disputes, particularly those involving creative reuse. If a material that would simply go to waste is repurposed to some useful end, how much control should the creative entity retain, having essentially written it off? Should I demand compensation from a landfill artist because it’s MY discarded breadcrusts he chose to bronze?

  32. Wulf says:

    Ian Young’s book “The Stonewall Experiment” (1995) included a chapter called ‘The Immortal Henrietta Lacks” which talks about how the HeLa cells contaminated and invalidated decades of cancer research in the 70′s and 80′s. Not because they were drifting around the room landing in petri dishes, but because they were misidentified by institutions distributing them. So many promising cancer studies were based on these supposedly varied cell lines from around the world (but which all turned out to originate with Henrietta Lacks) that the research community tried to cover it up and several more years passed before the error was finally acknowledged.

  33. Elvis Gump says:

    I don’t know about anyone else and I know it does seem somewhat creepy the way the story of Mrs Lacks has always been pitched over the years, but if it was MY cells I’d be overjoyed to know the good they’ve done in research to save so many lives.

    Would I like my decedents to have a cut of profits, well yeah, but they should take comfort that despite being cut out of permissions or profits, their mom’s legacy to in having make medical advances that benefited ordinary people. Shame on the corporations who profited for not stepping up and helping Lacks heirs out. Just a minuscule portion of the profits made would mean the world to them.

  34. Anonymous says:

    I had my tissue taken in 1986. A immortal cell line was developed and patented. The cell line is called MCF10.Both HeLa and my cells are used together in research. Many of the same things happened to me that happened to her.She was 30, I was 36. She was black, I’m white.Yes, my cells are available at ATCC for $429, also they are sold commercially for $6000. The courts say you have no rights to your tissue after it leaves your body. Many people disagree. I’m not sure of the answers.I do know its a question of being treated “honorably”. You be the judge.

  35. Anonymous says:

    Provided privacy is respected and people aren’t being asked to give samples for research purposes without knowing it, I simply can’t see any problem with the deal being that a person gets medical care and researchers can do whatever they please with any leftovers. If my removed mole helps cure some awful disease and I never hear of it, I’m fine. Just so long as no one can use it, say, to do DNA testing in a way that can get back to me. To force on a patient a duty to help future patients in a way that in no way hurts the current patient is fair; we receive from the system and ought to give back.

    –Beryl

  36. Anonymous says:

    It’s pretty cold comfort to know your mom’s death benefitted millions of wealthy people when you can’t afford health care. There’s a reason why it’s called “generational poverty.”

    Also, could we refrain from calling people of color freeloaders and comparing them to animals, eg. “scrambling for crumbs like mice” merely for wanting access to medical care? Really not cool.

  37. Anonymous says:

    Maybe I’m weird. Maybe I’m biased. But I would be perfectly happy to let my cells (or my mother’s, grandmother’s, or anybody else’s in my family) be used for research. Part of me would be happy to know that, even in the death of my loving mother (died at 33 due to Juvenile Diabetes) she was able to do what she always wanted: help other people!

    No, I don’t believe that there’s anything special like the HeLa cell line stemming from my mother. But even if there were, it would be with my blessing!

    Somehow appropriate: Captcha phrase is “immenser Good”

  38. ozzzzzz says:

    @20arikol I think there are many social issues at play here as well that you have to consider.

    How would you feel if you knew that the advances made using your cells would benefit other, wealthier people, but not your own children? Obviously this is tangential, but I think the wider issue is the cost/availability of healthcare. Given that we can take “biological property” from the less financially secure as indiscriminately as from the wealthy, shouldn’t the products of the research on that “property” be just as indiscriminately distributed?

    In a nutshell, I have no problem with the use of HeLa’s cells in research, even if the head of the non-profit distributing them is making six figures. I DO have a problem with the fact that the treatments developed from her cells aren’t made available to anyone who might benefit from them. This sentiment is thrown into sharp relief in this particular case as it seems HeLa came from a walk of life that would unlikely to be able to afford the kinds of treatments her cells were instrumental in developing.

    • rrh says:

      Ah, right. I’m Canadian, so I tend to forget about that part.

      I had an argument recently with a friend who took issue with Dr. Wilder Penfield’s experiments. It covered some interesting ethical questions kind of similar to this, if his basic claims are true.

      His basic claim was that Penfield, while he had a patient’s skull open, would continue his testing beyond the bare minimum necessary to solve that single patient’s case, but to further his studies into the brain. However, that single patient was undoubtedly benefiting from earlier experiments and these experiments could help future patients.

  39. Anonymous says:

    There are almost 11,000 patents involving HeLa cells(Wiki)
    A feature film in production.
    No money in HeLa cells, Really?

  40. Anonymous says:

    @Beelzebuddy: OT, but I think this is the first time I’ve ever heard someone lament their habit of having an idea, contemplating it and letting it develop instead of just crapping it out. You may occasionally get pipped at the post, but I think it’s probably worth it.

  41. Bekah says:

    Just being told would help a great deal. I have a mitochondrial mutation and while my loading is quite low, for those with high loadings it is not good news. Researchers currently have blood, urine, muscle and stem cell samples from me and I have absolutely no idea what they do with any of it because most of the time they don’t even bother to tell you what their research is in the first place let alone what it gets used for later on. Mostly these studies take all day and can be painful. There is no financial reward, no compensation for lost income or travel but what gets to me most is that there is no communication of results. I am more than happy to be a research participant, I’m even happy to have an arm full of scars from biopsies, but I want some communication. If you make your research participants feel a part of your research they will generally do a lot more for you. Certainly don’t tell your participants that you don’t communicate results to them because they wouldn’t understand it anyway.

  42. mentsaortae says:

    I agree completely with Anon #38, I would be delighted to know that cells harvested from myself or any member of my family had helped in any small way to advance medical science. I could not care less if a profit, however large, were to be made from this activity and I would not expect any form of recognition or recompense.

    I would not regard myself as particularly altruistic but I do find some of the comments here (and the Lacks’ family reaction) extraordinary; Is this a typically American attitude?

  43. Obviously says:

    Huh… well… they can do whatever they want with my biological material after they’re done testing it for what they were supposed to. I certainly don’t need it anymore. If it goes on to help cure a disease even better. I don’t need to be paid royalties on a blood sample.

  44. Anonymous says:

    My first thought was “oh no, this is going to scare people away from medical science if people hear about this”, but it actually seems to be capable of doing the opposite.
    My first instinct was probably wrong. Keeping people in the dark almost never gives a positive outcome.

    also,
    http://www.xkcd.com/659/

  45. sally599 says:

    I really have no idea why anyone would think there is a profit to be made on these cell lines, yes we all pay like $100 if we want to get a line from ATCC but that basically pays for the maintenance of the line. This particular case is a Pandora’s box that can’t be unopened but currently people sign waivers and I’m pretty sure that you won’t even be treated if you don’t sign one, I’ve never had the ability to opt out at any University hospital, I guess you could get treatment somewhere else. Also thanks to HIPAA your kids will never ever know that you had any small part in saving the world now no one will care that you existed and your kids won’t get $ of a book so I guess its for the best, huh?

    • jessemoya says:

      ATCC and other companies are not non-profits who are doing the research community some favor; of course there are operational costs, but there is still a profit being made. Possibly even a huge profit, but I can only speculate what the margins are because I’ve never personally seen how much less than list my institution pays.

      • Jonathan Badger says:

        ATCC certainly *is* not-for-profit, and yes, it *does* exists to do the research community a favor. Really. If you think you can start a culture collection that can do it cheaper, knock yourself out.

        • Osprey101 says:

          Guidestar.org has the IRS form 990 for the ATCC on their website. Their president pulled down $760,783 in 2008, with another $256,038 from “other compensation,” on total revenue of $65 million. That’s a pretty good chunk of change for a not-for-profit.

          • Jonathan Badger says:

            Yes, leaders of not-for-profit organizations can do quite well for themselves. That’s not in dispute. There’s an argument (which one can agree with or not) that leaders of these organizations need to compensated on a level comparable to a for-profit organization of equivalent size and importance in order to attract equivalent talent.

            It’s the same issue with charities. Many people are shocked that leaders of charities do quite well. Just because people don’t work for a company doesn’t mean that they are working as volunteers.

          • Anonymous says:

            What is with (some) BB posters equating not-for-profit employees with volunteers? As someone who doesn’t volunteer (much) anymore because of how poorly most people treat both staffers and volunteers, screw you.

            If I am an expert, or if I’m just someone minimally qualified in my field, or even if I’m just putting time in doing grunt work, do I not require money for sustenance and shelter, regardless of whether I work at a for-profit or not-for-profit organization?

            Sure, there are people who get paid too much to do what they do, but why should it be any more or less egregious when it’s done by someone working for a charitable organization?

            It costs money to run a real charity. Some of that money goes to people working for the charity. Get over it. And no, nobody wants your fckng nasty yoga mat.

  46. WA says:

    Frankly, the Henrietta Lacks Foundation sounds like one of the most ridiculous and dubiously legal charities I’ve ever heard of. Note that it doesn’t have 501(c)3 status yet, and I’ll be astonished if they receive it. It’s essentially a “you owe this family money, so give money to them” foundation. How does that qualify for 501(c)3? Can I start a “give me money” foundation? Or do I need an author to start it for me?

    Of course, in their actual filings with the IRS, they present very different goals than they have on their website, specifically written in a way to avoid mention of the “give money to Lacks’ descendants” part and fulfil 501(c)3 public charity requirements, complete with all the public outreach, education, and so on that would be expected. As a trustee of a 501(c)3, I expect they’ll have fun explaining this discrepancy to the IRS: applications for public charity status are closely scrutinized, and the IRS does more than just look through filings.

    As for Henrietta Lacks and the book: what exactly is it that she sacrificed? Why exactly should her descendants be entitled to anything for cells that were essentially waste? If an artist were to take something from my trash, and make a million-dollar artwork from it, should I be entitled to anything? With copyright and patents, we at least have the idea of intellectual property and profit off of one’s intellectual contributions to society. Henrietta Lacks contributed nothing to HeLa except cells she probably didn’t want—to call her a “woman behind some of the greatest advances in medical science” is an insult to people who have devoted their lives to medical research. Her descendants contributed nothing at all. That they would react in such a manner is a startling testament to selfishness and greed.

    I would be honoured to have things I neither want nor need used to benefit society and save lives; if I were to react in such a selfish manner regarding cells, my family would disown me, and be justified in doing so.

    Of course, it’s very possible that this is all just stirring up a controversy to sell more books, and that the views of the family are being misrepresented. I hope they are, because it would otherwise be very depressing to think that there are such people in the world.

  47. Patrick Dodds says:

    For another take on this type of thing, Google “Alder Hey scandal”.

  48. jacobian says:

    Pharma are profiting from having used someones flesh. They use IP arguments all the time. The family of Lacks had to grow up without a mother in relative poverty.

    In the end we should be abolishing IP entirely. In a fair society all the people who are currently systemically impoverished because of their race will be compensated.

    In the mean time its odd to care about legalistic arguments regarding who owns what. Clearly pharma doesn’t need the money as bad as her family does.

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