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Geneticists take HeLa sequence off-line after Lacks family notes they hadn’t given consent

with 24 comments

g3HeLa — the cell line that has apparently taken over any number of others commonly used in science, suggesting that many researchers may not have been studying what they thought they were studying — is back in the news. This weekend, it was the DNA sequence of the cells that’s made headlines, with a quiet unpublishing of data.

As Rebecca Skloot, author of The Immortal Life of Henrietta Lacks — Lacks’s name is where “HeLa” comes from, as they’re her cells — wrote in the New York Times Sunday, a group of researchers at the European Molecular Biology Laboratory published an analysis of the HeLa cells’ genome on March 11 in G3: Genes, Genomes, Geneticsa new journal from the Genetics Society of America.

That genome, of course, could be very useful in research, given how widely used HeLa cells are. But the problem was that it also reveals a great deal about the genetics of Lacks’s family, despite an author’s claim in a press release that “We cannot infer anything about Henrietta Lacks’s genome, or of her descendants, from the data generated in this study.” And the family hadn’t given consent for the genome to be published.

Unfortunately, as Skloot notes, this was yet another violation of the family’s privacy:

The family has been through a lot with HeLa: they didn’t learn of the cells until 20 years after Lacks’s death, when scientists began using her children in research without their knowledge. Later their medical records were released to the press and published without consent.

Although with a few exceptions the scientific community was “surprisingly silent on the issue,” Skloot writes (we’ve added a few links):

After hearing from the Lacks family, the European team apologized, revised the news release and quietly took the data off-line. (At least 15 people had already downloaded it.) They also pointed to other databases that had published portions of Henrietta Lacks’s genetic data (also without consent). They hope to talk with the Lacks family to determine how to handle the HeLa genome while working toward creating international standards for handling these issues.

Those international standards are the major issue that this situation highlights. If this spotlight leads to real reforms, transparency, and trust, that would be a good thing.

In the meantime, it seems to us, the G3 paper is in a bit of limbo: For good reason, the data it’s based on aren’t publicly available — a requirement of publication. We’ve contacted the editor of the journal to find out if there are any changes planned, and will update with anything we learn.

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Written by Ivan Oransky

March 25, 2013 at 11:31 am

24 Responses

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  1. Well the press release certainly doesn’t contain an apology – more like a petulant and defensive “we didn’t do anything wrong” response to the situation. What a pity they didn’t learn the lesson which they should have. It’s unfortunate that the likely consequence of these ongoing violations of basic courtesy and common sense are restrictive regulations that will hamper progress.

    Andrewg

    March 25, 2013 at 12:23 pm

  2. This is a naive question, but should G3 have ensured that the authors had obtained informed consent to publish the genome sequence as a condition of publication, given the well-known origins of HeLa cells?

    Jen

    March 26, 2013 at 1:30 am

    • This question is not naive at all, and I think not only G3 but also the reviewers should have rejected the paper when there was no evidence that the authors had obtained consent …

      Sebastian

      March 26, 2013 at 11:25 am

    • Nope, although it’s a good question nonetheless. The HeLa cell line (nor any other human cell line) is not considered patient material at this point. Obtaining consent should have been done by the original research team, led by Otto Gey. That was never done, mostly due to oversight but also because there was no established mechanism for this in 1951. The term “informed consent” doesn’t even appear in the legal literature until 1957. After the cells were published (1953 onward) and shared with other research labs it was too late for consent to be obtained. This is why the HeLa cell line is a public resource available through repositories such as ATCC.

      MaryK

      March 26, 2013 at 12:54 pm

      • True, those laws and oversights didn’t exist at the time, but to say that the cell line is not patient material at this point so it’s too late to consent, science can do it – so, so. RUDE.
        It’s this caviler attitude that makes scientists seem dismissive of people’s pain and voice in these ethical issues. It doesn’t matter if they ‘did nothing wrong’ technically it is a violation of trust – trust that already does NOT exist between this family in particular and science but also between larger communities (like African-Americans, Native Americans, Indigenous people from all over and science — science that often has a white/European face that says things to the effect that – We did this, we didn’t get/need your permission, we win.

        DNLee (@DNLee5)

        March 26, 2013 at 9:28 pm

        • Though I agree that publishing the HeLa genomic sequence without the family’s permission is completely inappropriate (imagine what their insurance company will do with the information!), injecting race into this particular aspect of the HeLa/Henrietta Lacks controversy is probably overreaching.

          Randle McMurphy

          March 26, 2013 at 11:27 pm

          • “overreaching” – Probably not – as of today how much of biological/genetic material is not been ‘confiscated’, worldwide from Native Peoples without compensation, patent established etc. Not too long ago we had the case of the Grace Corporation and the Neem plant from India. That would have prevented the Indian people from utilizing the plant that they had used for centuries. This only a small splinter off the larger problem. The researchers mentioned by DNLee above, sees the World and its resources as common property that they can not only use but commercialize. And the view is so entrenched that it seems natural and normal.

            Adam

            March 30, 2013 at 2:45 pm

  3. The authors describe their characterization as one of “a HeLa cell line,” not “a cell from Henrietta Lacks,” and that’s accurate. This thing has been passaged long enough and undergone enough rearrangements that they may as well have been sequencing her great-great-great granddaughter. I get the political difficulties with continuing to deal with these cells now that the book has been out for some time, but these authors clearly didn’t do anything wrong. Are you trying to tell me that Ms. Lacks was walking around with a bunch of pentaploid and hexaploid chromosomes, and with 1/3 of her genome carrying mutations not found in the rest of the human population? When you talk about “a person’s genome,” this isn’t it.

    Useur

    March 26, 2013 at 6:45 am

    • See this figure that was made from the cancer genome of HeLa: pic.twitter.com/BfAZjeeRyx
      HeLa genome still contains the basic African-American ancestry of Henrietta Lacks, despite the claim that the information would look as if EMBL sequenced her G^3-granddaughter. In addition, it is easy to clean the common germline variants due to linkage disequilibrium.

      Yaniv Erlich

      March 26, 2013 at 11:22 am

      • I think the biggest implication (read provocative) to take away from this study is that we can no longer rely on HeLa cell lines, given the level of mutation they’ve undergone. Not to discredit all the accomplishment that have come out of previous research, however, more and more we are moving towards developing medicine for population (n=1). Although much has been uncovered about cancer using HeLa, a patient with MEN1 may not benefit from the pattern/expression – or lack there of – that HeLa exhibits.

        Yervant Terzian

        March 26, 2013 at 5:07 pm

      • Have you tried any other cancer genomes?

        The problem I see is that since AFAIK genetic variability goes down fast when crossing the Sahara, I wouldn’t be that surprised if high heterozygosity and alleles uncommon for most human populations get pegged you for an African population.

        Which would be the thing I expected for a hexaploid cell line infected by a virus, most likely with defective DNA repair…

        Trottelreiner

        April 8, 2013 at 5:59 pm

  4. Did this paper not get published in a peer-reviewed journal? Does that journal not have an ethics screen? If so, why is the entire focus on the researchers themselves?

    I’m surprised Skloot took such heated issue with the people who published the paper and almost none at all with the editorial staff. Or did she?

    I’m curious to hear if the journal itself responds to your inquiry, and what their take on this will be.

    RT

    March 26, 2013 at 12:04 pm

  5. The scientists were not required to obtain informed consent, BOTH because this is a cell line, and because there is absolutely no procedure or precedent for obtaining a family’s consent for publishing a genome sequence. None of the famous people (Craig Venter, James Watson, etc.) got consent from their family. As such there is no requirement for informed consent in a study like this or even ethics approval. Nor has there been for the countless studies that have already generated sequence information on a cell line that has been in the public domain for the last 60 years. It is unfortunate that no one asked Henrietta for permission, but this is the only case in history where it ever happened because it is the first one. That ship has sailed. And now the scientists who continue to use these cells in the name of furthering science and making medical breakthroughs are doing absolutely no wrong. Just because some other scientists decided to prove you could predict something about the family’s genetics based on this data doesn’t mean these scientists are in the wrong. Those other scientists could have done this based on tons of data from tons of studies prior to this one. But no one did so far. This latest study has been used as an example, but they acted completely according to proper scientific conduct and according to the context of the field and therefore do not deserve to be singled out.

    Yerv

    March 26, 2013 at 2:21 pm

    • Yerv

      Out of respect for the lady in question, it would have been ethically correct to seek informed consent, and some financial compensation for the relatives would be appropriate.

      Stewart

      March 26, 2013 at 2:52 pm

      • The research performed is non-profit and freely available so there was no financial gain from it. As others have said the book and movie are the main commercial ventures profiting from the HeLa story.

        You seem to be under the impression that Henrietta Lacks is a living patient. She died 61 years ago. It is no longer possible to obtain informed consent, no matter how well-intentioned that sentiment may be.

        Peter

        March 26, 2013 at 9:20 pm

        • Peter

          I am well aware of the Lacks story, thank you. It is a story of shame and poor decision making by a few individuals. Of course, there is the flip side of advanced science. But, is it justifiable?

          Are you suggesting there has been no monetary gain for anyone using the cell line such as patents, successful grant applications and many a academic career progression? I would argue otherwise.

          If your vision of lack of compensation for living relatives translated to war crimes there would never be compensation for anything.

          What stands out of this story is the complete and utter lack of an ethical base and imaginary academic superiority, alongside some shameful racial history, to share gains in a fair and equal manner to those living relatives in a weakened position.

          Stewart

          March 27, 2013 at 3:53 pm

          • Your feelings about this are very natural and definitely coming from the right place. If there is one thing everyone could agree on, it is shared empathy for Henrietta Lacks.

            If we could focus on the issue at hand, the use of the HeLa cell line in biomedical research is not related to any of the points you have raised. The (faux) faux pas of publishing an analysis of the HeLa genome is not based on any actual wrongdoing. There is no financial gain involved; science is woefully underfunded in general, and this particular study was published in an open-access journal. Issues of racial discrimination are irrelevant in the use of the cells, regardless of their questionable provenance. I cannot comment on your war crimes analogy, except to say it is inappropriate.

            No, in fact, the scientists should not have approached the family for consent to sequence the HeLa genome, because 1) the family cannot offer it, and 2) it is considered (ironically) an ethical breach for researchers to contact patient families and they are strongly discouraged from doing so. The only reason it has become acceptable for the scientists in this case to discuss the issue with the Lacks family is because contact has been mediated by third parties in order to consult with them how the data should be handled.

            Peter

            March 28, 2013 at 7:22 am

          • Peter,
            Discussing the underfunding of science is not the issue at hand. The cells do not belong to the scientists who stole them and many made their careers from them, nor the companies who have profited hugely – they belong to the Lacks. It would be simple to stop using them or pay appropriate compensation.

            Peter wrote “There is no financial gain involved”

            Are you certain about that? I am certain that statement is incorrect.

            Peter wrote “Issues of racial discrimination are irrelevant”

            Well, we can agree to disagree, Peter, as I think if the lady in question was an upper class white things may have turned out differently.

            stewart

            March 28, 2013 at 1:09 pm

  6. There’s a legal/ethical angle to this which makes it a more difficult case, even for those who object to the use of any human materials obtained without present-day standards of informed consent. The Lacks family seem to be asserting *their own* privacy interests, not those of Henrietta Lacks. If they have their own protectable privacy interests in her genome sequence, then the informed consent of Henrietta Lacks is irrelevant. In fact, using human materials in general would have to stop. How would one go about getting consent from a donor’s entire family, include unborn members?

    On the flip side, any privacy interest of Henrietta Lacks herself lapsed with her death. If she had actual damages during life, the right to a remedy for her own losses would (usually) pass to her heirs. However, it’s hard to see how she could incur any further damages after her death. So, again, informed consent is essentially irrelevant.

    There are other legal angles to this, and other interests to be considered. Some of them are important. However, informed consent and privacy may be red herrings.

    Toby White

    March 26, 2013 at 4:05 pm

  7. I thought Toby White had some good points, but as to previous statements that Henrietta Lack’s privacy interest was irrelevant because it had already been violated without any repercussions numerous times, I don’t agree. I don’t think the issues are so cut and dried. During her final illness and after her death, Ms Lack’s legal rights were in evolution; as has been said above, “privacy” doesn’t appear as an issue until 1959. Her descendants didn’t know their DNA was being used for twenty years. She is, what we might say, an index case in the evolution of privacy law. Her DNA is still identifiable even though many grotesque mutations have appeared, again as noted, pentaploidy and so on. Her cells have done a lot for science.

    Those who continue to use identifiable HeLa cells without any acknowledgement and argue that they have a right to do so because it has already been done so many times without repercussions should consider the legal equivalent: it’s OK to strike a man who has been struck a hundred times already because he doesn’t strike back. It’s not a pretty picture.

    While it is no longer appropriate, much less possible, to with-hold the publication of her DNA sequences, it is appropriate to compensate her family in some way and to acknowledge her contribution in every publication that uses the material.
    The best approach would be to offer her first degree relatives generous financial compensation, perhaps in the form of royalties like those given for playing one’s songs on the radio. It would be better to avoid court litigation by being generous in the initial offer and in the final terms.

    • If it’s compensation that’ll solve this problem, the Laks should get royalties from Rebecca Skloot’s book and the upcoming movie with Oprah. There’s no point in penalizing researchers who advanced the field by uncovering that HeLa isn’t particularly the best cell line to use moving forward.

      Yervant Terzian

      March 26, 2013 at 8:26 pm

      • Agreed. I would like to see (all) proceeds from the book and movie go to the American Cancer Society.

        Rachel

        March 26, 2013 at 9:51 pm

  8. This was actually the first thing that came to my mind when I saw that the HeLa genome had been sequenced. Really, the researchers should have seen this coming. Regardless of whether the consent of the family is a legal requirement or not, you should just be a nice person and ask if that would be okay with the family, that’s what ethics is really about, not ticking a box on a checksheet prior to publication.

    Booker

    March 26, 2013 at 7:58 pm

  9. Strange case. The author’s of the G3 paper basically did what a number of labs have already done, but in a more detailed way. There is plenty of genetic data on HeLa cells available because of ChIP-sequencing experiments. Perhaps not enough reads to do a high quality genome sequence but probably enough to get an idea of what genes are mutated. Probably this paper was singled out because it was focused solely on HeLa and also got some press coverage before this current controversy.

    It seems that without having DNA of a non-tumour sample from Henrietta Lacks it would be difficult to infer anything about the alleles carried by her descendants. Because the cell line has been in culture for many years it has likely acquired many new mutations, and as the G3 study shows has major chromosomal abnormalities which (I would hope) are completely absent from her living relatives.

    Certainly disclosure of disease related alleles could affect Lacks’ descendants (for instance if an insurance company wanted to use the data) but HeLa cells are essentially in the public domain. I’m curious to see how this all turns out.

    opop

    April 2, 2013 at 2:45 am


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