Scientists not quite done ripping off Henrietta Lacks and family

"History seems to have repeated itself. A group of scientists at the European Molecular Biology Laboratory in Heidelberg recently published a paper in which they sequenced the entire genome of a HeLa cell – essentially putting Henrietta Lacks's DNA sequence up on the internet for all to see. Amazingly, they failed to alert anyone in the Lacks family about their intentions or ask their permission." [Guardian]



  1. If the genome wasn’t also freely available on the internet in the form of dozens if not hundreds of various datasets of transcriptome-seq, ChIP-Seq, SNP-array and other data I would probably care a lot more. Also if the genome hadn’t been so mutated and selected for growth in culture media that it is almost a different species with all sorts of chromosomal rearrangements and mutations that are definitely not Henrietta Lacks to the point where people don’t like to use the cell line because it doesn’t react like normal human cells, or even most tumor cells.

    1.  Nevertheless, this publication still amounts to disclosure of the various genotypes carried by Henrietta Lacks’s blood relatives. Not cool.

      1. Out of curiosity, if I decide to publish my own DNA sequence without informing anyone in my family, would you have issues because I was disclosing genes probably carried by my living, dead and unborn blood relatives?

        1. Probably not, but your family might not talk to you at Thanksgiving dinner. Which, to be fair, could be a win.

          1. And when the FBI finds a DNA match and starts a nation-wide manhunt for “Ocschwar McFartypants,” you’ll know you made the right move…

        2. My understanding is that this issue has come up(very, very, unpleasantly) in the context of Huntington’s Disease(and probably other genetic diseases; but that is the one that I’ve heard specifically mentioned).

          There is a genetic test, and some people who are at risk want to have it done for one reason or another(generally to avoid passing it on); but revealing an individual’s status also provides information about the probabilities of parents and siblings. The ethics of denying a competent adult who wants a genetic test a genetic test are… generally not well regarded; but people who receive bad news that they chose not to be tested for by inference tend to be exceedingly displeased.(Given the psychiatric changes, none for the better, associated with Huntington’s onset, an affected and exceedingly displeased parent can be especially exceedingly displeased).

          Apparently, the matter is dodgy enough that there have been some cases of pre-implantation genetic diagnosis that are, by the patient’s request, done behind a veil of secrecy: The IVF team produces a fairly large number of blastocysts, as normal, and tests them. Any that test positive are discarded; but the parents are not informed whether or not there were any positives, just that only negatives will be used, thus blocking inheritance of a rather ghastly condition without providing information about the parent’s own disease status.

          1. So people are concerned about their DNA being laid out for even their doctors and family to see…but this publishing a paper using a stranger’s goes well beyond.

          2. I don’t know enough to comment on how much information a HeLa cell is capable of providing about her descendants at this point, given the weirdness of the cell line and the influence of paternal DNA carried by all of them; but not by her; but my understanding is that Huntington’s is considered to be especially messy because it(unlike a great many genetic diseases which are either recessive or X-linked, with relatively early onset; but plenty of silent carriers) is caused by a dominant allele; but with late onset(and, at present, essentially no treatments of other than purely supportive use whatsoever).

            If person X has it, it is virtually certain(barring rare-but-not-quite-impossible spontaneous mutation) that at least one of their parents has it(and thanks to family histories, it is probably pretty guessable which parent). Also, since it isn’t X-linked, sex has no effect on incidence, so if person X has it, all of person X’s siblings by the same parents(or same affected parent and others) have a 50% chance of having it. 

            This makes it both an unusually robust predictor by genetic testing standards and(since there is no ‘silent carrier option’) unusually robust in terms of drawing inferences about relatives of the person tested. Plus, since there are no treatments and onset is late, a positive diagnosis provides no information that will potentially improve your health, just the knowledge that Huntington’s is going to kill you very unpleasantly indeed(if something doesn’t get you first) and any (unscreened) offspring have a 50% chance of getting the same prognosis thanks to you.

            This doesn’t make it different in kind from other genetic information; but it certainly makes it different in degree, and also explains why tricks like the ‘blinded’ pre-implantation diagnosis might be in demand. 

        3. When people like Craig Venter and George Church publicly released their own genomes, some people seriously tried to make the argument that this was unethical without the consent of all their relatives. It’s absurd if you think about it — where would you make the cut off? All humanity (and indeed all life on Earth as far as we can tell) are technically relatives.

    1. Who was poor, uneducated, and black. Whose largely unethical, but accepted at the time, treatment by the educated white medical establishment led to decades of confusion and pain for her family. I’m not as outraged by this latest development as others (mostly for the reasons Jonathan Goodson stated above), but what a crass take on the feelings and lives of real people.

      1. While that’s terrible, it can’t be undone and the better part of a century of medical research has been done on the line. Capitulating to the selfish and irrational whims of those who are merely related to the person who was wronged will likely result in some actual deaths.

        1.  At worst it will result in the failure to save some lives.  It seems unlikely that no one who wasn’t already dying of cancer would be harmed by this (and those people are being harmed by cancer, not by this).

          “Failed to save lives” and “caused deaths” are subjectively very different as confirmed by various behavioral psychology experiments.  They’re also morally very different under most ethical theories.

    2. I’d be the last to argue that the treatment of Henrietta Lacks herself was anything but shabby(if not terribly atypical of the era); but I do have to wonder how long her descendants get to maintain a feeling of ownership over that grievance.

      It isn’t at all uncommon (on Boingboing and elsewhere) to encounter a ‘Dead author’s estate shakes down author/publisher/researcher over dubious copyright claim’, and those estates are generally seen very unsympathetically indeed.

      What sort of ‘right’ does Lacks’ estate/descendants have that makes them ‘wronged’ by HeLa cells? How long should it last? Is it perpetual? Life+70? 20 years fixed? Forever for DNA that might be useful for medical predictions about them; but none for information about the seriously weird stuff that HeLa cells do that human cells normally don’t?

      1. I figure they still have ownership over that grievance as long as they’re still being screwed over.  So with this act, the grievance has now been renewed for, well, the foreseeable future.

        1. You might argue that Henrietta’s injury is renewed, but she’s dead and can’t care about that.

          1. This one directly impacts her family, however.  Information which tells us something about their genetics* has been released.  That can (and at some point, no doubt, will) be used in ways directly detrimental to them.  (E.g. denial of life insurance, etc.)

            *Despite some biologists downplaying the relevance, others have pointed out that it does, indeed, tell us a good deal about the rest of the family’s genetic attributes.

          2. That’s not relevant, though. Had she consented to the creation of the line, the same thing would have occurred.

          3. She didn’t sign a consent form and she got nothing. 

            Had she signed a consent form, she would have gotten nothing.

            If she would have asked for something in exchange for the tissue, she would have been told “Here’s the offer – you get nothing.”

          4. How’s that not relevant?  The injury to her family has been renewed.  That’s what’s relevant.  (The argument could be made that the facts there was no consent and that the information was not anonymized are probably connected, though. The shabby treatment continues in part because there was a tradition of it in this case.)
            Consent, or lack thereof, is irrelevant to whether the family is getting shafted now (they are).

          1. Hasn’t stopped the biomedical companies which have made hundreds of millions of dollars in sales from the propagation of these cell lines.

          2. No one has made millions from selling cells that can be (and are) incubated by any biology grad student.

            You seem most upset that corporations have made money from treatments developed with the help of these cells. Never mind that most of that was basic research done in universities that they sold to corporations to fund their school or that these treatments like the polio vaccine have relieved the suffering of potentially hundreds of millions of people.

            This is one of those cases where I believe the needs of the many outweigh the needs of the few.

          3. No, I have a problem with arrogant scientists treating “normal” individuals with disdain and disrespect.

            Just because something is “legal” doesn’t make it moral. And “Science” does itself no favors by acting immorally.

          4. >>No, I have a problem with arrogant scientists

            Only arrogant scientists, or are they just one entry in a very very long ledger?

        1. Anyone can feel free to correct me if I’m wrong; but it looks like they got the same ‘none’ as everybody else whose tissues were used to originate a cell line(and there have been quite a few since), as being the source of the tissue sample is not seen as conferring a property interest in the resulting cell line. (See Moore v. Regents of the University of California)

          You do have to obtain informed consent now, and the above case does suggest that not mentioning the potential(or actual and ongoing) attempt to develop a cell line or other commercial product would be a failure to properly inform the patient; but that cell lines are (if patented at all) not something you gain a property interest in by providing the tissue of origin.

          1. What part of the fact that the Lacks estate got the same nothing as everyone else whose tissues originated cell lines is obvious?

            The ‘they got nothing’ part is obvious. The fact that being the tissue culture source never provides a property interest in the cell line, even if you aren’t poor and black and powerless, is hardly the obvious conclusion, despite apparently being standard practice to the present day.

          2. You’re entire objection relies on misapplying an analogy of a property right and monetary compensation.

      2. That’s what never really made sense to me in this whole thing. In fact, it it is even worse than the artist/author estate example, because at least in that case there was an active contribution by an ancestor. It is entirely coincidental that a major cell line came from the tumors of a poor black woman. It could have just as easily have come from those of a rich white man. In fact the origins of many samples are unknown, and the fact that we can assign a name to HeLa is a rarity. The standard laboratory form of E. coli (K12) comes from the poo of an unknown patient with diphtheria at Stanford in 1922. If this patient could be identified, are the descendants owed money from the biotech industry? 

        1.  It’s a historical quirk that the cell line wasn’t called something like “537 cells.”

          If they had been called “537” nobody would be claiming the family was cheated.

  2. I thought all the reasonable people on the internet agreed that scientific research should be made available to the public and ownership culture is bad. Would a person critical of this move by scientists also be critical of patenting genes?

    1. Not even the same argument. The problem here is that a woman’s tissue was taken without her or her family’s consent, and corporations have gone on to make hundreds of millions of dollars from discoveries made by studying her tissue. 

      It’s not really any more complicated than that. The world does not have the right to continue to exploit this lady (and her family) just because everyone else is doing it.

      1. How, exactly, is anyone “exploiting” Lacks in any way? She’s long dead. The original doctors are likely dead. Neither she nor her family actually did anything to contribute to any of the research which made that sample useful. If Lacks had never met these sinister cancer doctors she’d simply have died in obscurity like most other cancer patients. It seems like the only people currently exploiting the situation are her descendants, who have never been harmed by this medical research and who would never have had any role in consenting to the use of the samples in the first place.

        A close relative of mine, dead for decades now, was one of the first women in the US treated for breast cancer using radiation therapy. I’m told her case is written up in some literature of the period, and was valuable in refining the treatment methods of the time. Should I, as a direct descendant and carrier of her genes, be entitled to compensation for any useful knowledge gained from the study of her cancer? Should the same be true for every family of every patient of every doctor? 

        1. It’s theft. Time passed or money earned doesn’t erase the fact that a theft occurred. I’m not saying the victim should get millions of dollars in reparations (much less the victim’s family), but I am saying the thief shouldn’t be allowed to continue to profit from their stolen goods.

          Using slices of Einstein’s brain for research is a great thing, because he made it clear before his death he wanted his brain made available to science. Henrietta Lacks made no such agreement, and in that absence I think scientists have an obligation to quit using her tissue (or whatever you want to call the copies of her cells that exist today) for study.

          1. Copying is not theft. This is as true for genetic material as it is for copyrighted material.

          2.  Who’s the thief? The original doctor who took the biopsy samples in the course of examining Henrietta Lacks at Johns Hopkins in the course of her treatment? He didn’t make any money from that act. Dr. Gey, who first propagated the HeLa cell line, developed the roller drum, which is the only reason the cellsl could be propagated. He didn’t make any money off this.  The courts have ruled that you don’t have a property right to your excised tissue. Any value from the HeLa cell line came from the recognition that it had special properties. Without that recognition, and the technology to propagate the cells, it is medical waste.

          3.  We could also ban any iconic photographs from before the age of consent forms.  We could erase all photographic records of the Vietnam War for instance.

      2. It twists the scientific process to say “and corporations have gone on to make hundreds of millions of dollars from discoveries made by studying her tissue.” The discoveries and any profits made were not from anything inherent in the HeLa cell line. HeLa is useful because it is an immortal cell line, and for no other reason. The HeLa cell line is a tool, like laboratory glassware. Should the family of the individual(s) who invented Pyrex be cut into the profits for all discoveries made through the use of borosilicate glass test tubes?

  3. There are also national and international law – EU, in particular, also US HIPAA – medical/genetics/personal info privacy concerns. This would be broadcasting living people’s DNA sequences. We all ready know this information can be and is used for insurance and employment discrimination, at least in the US.

    Privacy is why the family needs to be asked for permission to publish; the money is another, also serious, matter. The family may be entitled to compensation for the privacy violation, but there are various legal consequences for the researchers.

    1. We all ready know this information can be and is used for insurance and employment discrimination, at least in the US.

      This nonsense keeps being brought up in discussions of genomics. But it isn’t true. Both things are illegal. The Genetic Information Nondiscrimation Act has been law since 2008.

      1. It can be used for insurance discrimination – it’s still legal to use the information to deny life insurance, for instance.  Just not health insurance.  And when it comes to employment discrimination – the law may prevent potential employers from demanding the information, as that would be obviously illegal, but if the information is already out there, good luck proving that was a factor in a hiring decision.

        1. I guess any of us could potentially be denied employment on the basis of a nonfatal disease that our grandmother might or might not have had.  It could definitely happen. Definitely.

          1. Why yes, that could happen.  You can be denied a job in Japan because of your blood type, for fuck’s sake  – you can’t tell me that public knowledge of a family gene even remotely linked to mental illness, for example, wouldn’t stop some employers from giving someone a job.

          2. Seriously?  What are you arguing, that if (when) this information reveals something detrimental, something that’s very publicly tied in with this particular family, life insurance companies (etc) won’t use it against them?  And they’ll do this why?  Out of the goodness of their hearts, perhaps?  
            Because I’d say the odds of companies not using that information to the family’s detriment are about the same as the likelihood that mythical apelike cryptids are stalking North American forests.

    1. Who exactly is the “genetic IP troll” in this case?  Oh right, there ain’t none.  Nice straw man.
      This is a privacy issue – genetic information has been published that reveals things about Henrietta Lacks’ descendants.

          1. Of course it’s not your problem. How could the disparate, isolated individual editors -possibly- be held responsible for the overall worldview created by their aggregate posts? It would be silly to implicate them in any way, whatsoever.

  4. A year or two back, I read: The Immortal Life of Henrietta Lacks by Rebecca Skloot.
    ISBN-10: 9781400052189 ISBN-13: 978-1400052189 ASIN: 1400052181

    Great book if you want to dig into the human side of a somewhat grim medical ‘Frankenstory’.

    A bit dry towards the end, trying to paint a picture of the ethical/legislative landscape surrounding the use of patient tissue, but it is a situation that’ll never become easy to navigate..

  5. A quick search on the internet reveals that the “HeLa” genome is NOT identical to (on fact, it IS not)Henrietta Lacks’ genome…

    1. And yet, HeLa wouldn’t exist without the Henrietta Lacks genome. Funny how something always has to come from something else, ain’t it?!

      1. I seriously doubt that anyone can prove “ownership”  of his/her genome, so the only questionable issue here would be privacy… which at this point ceases to apply.

        Disclaimer: this is MY opinion, and I do not claim to know the applicable law. Just common sense.

    1. Even if a disease causing mutation was identified in these cells, (and there’s still only a handful that are well characterized much to the chagrin of Francis Collins), there is probably only a 25% chance of that allele being in her grandchildren.

      1. The HeLa line is hyperploid, in other words, it has far more chromosomes than the normal diploid 46 chromosomes of normal human cells, and the number of chromosomes varies cell to cell somewhat withthe most common number of chromosomes being 82. This was the effect of an HPV infection on top of concurrent syphilis and chlamydia. A perfect storm, to use a vary hackneyed phrase, created the cell line in that original tumor.  The interesting things about this cell line aren’t in any living Lacks family member’s genome, nor is much to be told about the living Lacks from this cell line, and certainly not personally identifying info.

        1.  Which goes to show that the cells lack certain DNA repair mechanisms and mutations ran wild.  On top of that is the highly unnatural selection for genetic traits that make the cells proliferate like mad in a dish, a selection that occurs a couple times a day each generation as the cells are grown in culture.

  6. Outrage? Really? Shouldn’t the Pirate Bay be analogous? It wasn’t that long ago that authorship was sacrosanct.

  7. I am a working genomicist and I hope I can clarify some of the issues surrounding this event. I think way BoingBoing wrote the lede is highly inaccurate and inflammatory.

    1.    Was it wrong to use HL’s cells without consent? Yes, this would not happen today and the current researchers operate under strict regulations. This was not the case at the time of HL’s cell collection. There are various complicated issues here—for example, scientists have sequenced museum samples; is this wrong? But, that is probably another discussion.

    2.     Will your relatives have breach of privacy if I sequenced your genome? This is highly unlikely. The closest analogy would be if I were a model and sold my image, do you as my sibling have a right to prevent that from happening? Given your genome, I can guess with probability 0.5 that your sibling might have at least one same allele (= gene type) as you. You have two alleles for each gene—what we call genotype. Because genetic diseases are typically recessive, you would need to know the genotype. The probability of your sibling sharing the same genotype as you is 0.25. If, in fact, your sibling’s genotype is not identical to yours, knowing your genotype gives me no clue about your sibling’s genotype. One genome of a family member does not give a whole lot of medically relevant information about other family members. In addition, other people have noted that the current cell lines have mutated greatly from HL’s original genome. This is very true. Even a tumor immediately collected from an individual will have 10-20% of the genome altered. HL’s cell lines have undergone much more mutations in the lab.

    3.    Suppose HL were alive today and we were to collect cells with consent. Would HL be eligible to share in any commercialization benefits? Definitely not. First, HL’s cell  has no unique characteristics that would make those cells more valuable than others. It was a historical accident. Second, there is no intellectual property (IP) associated with a cell or even a genome. IP is usually generated by the claiming utility of the derived information (acquired from R&D) — not the original material. In fact, these days, even utility IP with DNA information is being denied. If there is any thought that somehow HL and her relatives are being screwed over monetarily, that is as wrong as wrong can be.

    1.  And genetic testing is probably a lot less effective than most people imagine, probably about 1/1000 as effective.

      Of course that’s an understandable misconception, because it’s about 1/1000 as effective as Francis Collins promised.

  8. I think people who are all wound up over this should take that energy and go candystripe a cancer ward.

    (candystripers being teenage volunteers who wore pink striped smocks in the US)

  9. There’s an interesting contrast between the groups that think Monsanto owns rights to future generations of its transgenic corn but there is no ownership of HeLa cells (Let’s call them +/-) compared to people who believe that Monsanto should have no rights to future generations of its corn, but living relatives of the HeLa cell line have rights (let’s call them -/+)

    Probably nobody here would be +/+ or -/-, which would be the Occam’s Razor solutions.

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