The Immortal Consenting of Henrietta Lacks

Rebecca Skloot has an essay in today’s New York Times discussing the recent publication of the genome sequence of a widely used human cell line. Skloot, as most of you already know, wrote a book about the history this cell line  – known as HeLa for Henrietta Lacks, the woman from whom they were obtained.

In her book, Skloot describes how the cells were taken from Lacks, who was dying of agressive ovarian cancer, without her knowledge or consent, and how the family was kept in the dark about the cells for decades, even as they researchers showed up to take samples from Lacks’ descendants. Skloot has done a wonderful job of not only gaining the Lacks family’s support for her book, but of engaging them with the legacy of Henrietta’s unwitting contribution to science and medicine.

So it makes sense that Skloot would take umbrage with the release of the complete sequence of HeLa cells, published without the consent of knowledge of the Lacks family. I can understand how this happened – HeLa cells are so ubiquitous in the lab, it’s easy to forget that they come from a real person (although it’s hard to believe the authors of the paper hadn’t read, or at least heard of, Skloot’s book). But it’s really not acceptable, something the authors now realize and are trying to correct.

Unfortunately, Skloot’s NYT essay on this topic was muddled – conflating two distinct issues – one very general, the other specific to HeLa cells – that have to be dealt with separately.

The first issue is one of consent from Henrietta Lacks to sequence and publish the genome of cells derived from her body. As Skloot made very clear in her book, no such consent was obtained. And, since Lacks died a long time ago, it can not be obtained. Lots of people, including Skloot, point out that consent was neither required nor generally obtained in the 1950’s when Lacks was sick. And knowing that Lacks was a poor African-American woman, it’s hard not to see more sinister overtones her treatment.

To me, there really is no moral question here. We should not be using HeLa cells because no consent was obtained to take them. And I am very uncomfortable with the general idea that heirs/descendants should be allowed to retroactively consent for a dead relative. Nothing that can happen now or in the future can make up for the lack of real consent. But whether they should be used or not, these cells are being used all over the planet. Given that this is unlikely to change, there’s really no choice but to de facto give the Lacks family a kind of proxy consenting power to act on Henrietta’s behalf.

However Skloot’s piece glides from the issue of how to retroactively get Henrietta’s permission to experiment with and publish about her cells to the seemingly related  issue of whether publication of the HeLa cell genome is an invasion of the privacy of Lacks’ living relatives. Skloot repeatedly raises the issue of all the things we can learn about an individual and their relatives by sequencing their DNA, and whether family members should have some kind of veto power over the publishing of a relatives genome.

But this is a very different than the question of how to obtain consent from an individual who is not longer alive. To see why, lets stipulate that Henrietta Lacks had consented to all these studies – had, in sound mind, given permission for the doctors to take her cell lines, establish cultures, send them around the world to be used for any purpose and to freely publish the results of any studies on these cells. Would you still require the authors of the paper to consent Lacks’ family?

Skloot clearly thinks the answer is yes – positing that publishing any individual’s genome sequence is intrinsically   an invasion of the privacy of their relatives – whether or not the sequenced individual consented to the process. Hence this quote:

“That is private family information,” said Jeri Lacks-Whye, Lacks’s granddaughter. “It shouldn’t have been published without our consent.”

This has nothing nothing to do with the history of Henrietta Lacks and HeLa cells. It is an active assertion about familial privacy rights that would – if you accept it – be just as true if the paper in question had described the sequencing of anyone else’s genome. Why weren’t the same issues raised when the genome belonged not to Henrietta Lacks, but to Jim Watson or Craig Venter?

I find the way Skloot’s NYT piece moves back and forth between the historical transgressions against Henrietta Lacks and the contemporary threat to her relatives’ privacy incredibly misleading. I doubt this was intentional – rather I think it reflects muddled thinking on her part about these issues. But either way, by juxtaposing the entirely justifiable empowering of the Lacks family to grant individual consent on Henrietta’s behalf with the desire of the same family to protect its genetic privacy, Skloot is implying that these are one and the same – that we should give ANY family the right to veto the publication of a relative’s genome.

But this is a logical fallacy. We probably all agree that the Lacks family should have been consulted about the publication of the HeLa genome because Henrietta herself never gave such permission. And some of you (not me) may think that a family’s right to genetic privacy trumps the right of an individual to publish their genome. But the former does not, in any way, imply the latter, and I think Skloot did the conversation around these issues a huge diservice by conflating them in such a prominent way.

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34 Comments

  1. Posted March 24, 2013 at 12:51 am | Permalink

    Wow, this is a total misreading of that piece.

    I don’t move “back and forth between the historical transgressions against Henrietta Lacks and the contemporary threat to her relatives’ privacy” … I say a few words about Henrietta’s history in the first paragraph and that’s it. The story is about the Lacks family, the ways in which they (not Henrietta) have been used in research without consent, had their medical records released to the press and published, etc. And that we now have a new chapter in that story, which we can learn from.

    You say, “Skloot clearly thinks … publishing any individual’s genome sequence is intrinsically an invasion of the privacy of their relatives – whether or not the sequenced individual consented to the process.” I don’t say or even imply that at all. The quote you used (out of context) to prove your point is a quote from a Lacks family member responding to the fact that Henrietta’s genome was published without the family’s consent. That quote was not a comment on whether the family of *any individual* should have the right to determine what happens with their relatives’ DNA; it’s about whether *Henrietta’s* family should have that right. And from what you say here and on Twitter, you seem to agree with Henrietta’s family that this shouldn’t have happened without their consent.

    The point I make is this: “The Lackses’ experiences over the last 60 years foretold nearly every major ethical issue raised by research on human tissues and genetic material. Now they’re raising a new round of ethical questions for science: though their consent is not (yet) required for publishing private genetic information from HeLa, should it be? Should we require consent before anyone’s genome is sequenced and published? And what control should gene-sharing family members have?”

    I don’t argue for any specific answer to that question about gene-sharing family members. I simply point out that it’s one of many questions we don’t have an answer to yet. You have a (clearly very strong) opinion about it. Some people agree with you, others don’t. That’s one of the reasons it’s taking so long for the revisions to the current laws to come out. All of this is very complicated, there are a lot of valid concerns, and everyone wants to do this in a way that doesn’t inhibit scientific progress, but does protect people’s rights to privacy, consent, etc.

    Peace,

    Skloot

    • Posted March 24, 2013 at 5:15 am | Permalink

      I still don’t understand. On what grounds do you think the Lacks family should have been consented for the genome paper? If it’s to correct the historical one, then your piece is not about the privacy of family or any current issue. And if you think the authors should have gotten consent of family because of current invasion of privacy, then you ARE taking a stand on the issue. I honestly still can’t tell what your trying to say, and I don’t think it’s a trivially matter. You are viewed by many as voice of genetic ethics and I think you yourself are confused about these two issues.

      Case in point is the quote you say I misused. I don’t think I did. You were as you just said, using it to argue that sequencing #HeLa requires special consent of Lacks family because Henrietta was not consented, but the quote itself is saying something else – that it’s an invasion of the FAMILY’s privacy, which is an entirely different thing.

      • Posted March 24, 2013 at 12:35 pm | Permalink

        You and I have been around about this a lot and clearly just see things differently. I am certainly not confused about these issues — I’d say that you’re conflating things. But I’m not going to argue with you about that.

        Here is a portion of a comment I just posted Over on Gene Expression:

        I am definitely not implying what Eisen thinks I’m implying. The thing he seems to be missing is that this is a story very specific to the Lacks family. You cannot ignore their history when you ask whether scientists should have gotten their consent for sequencing and publishing the HeLa genome. My point is that their story, as it has many times in the past, is raising important ethical issues that many people (scientist, ethicists, policy makers, the public) agree we need to address, but haven’t yet. I do not try to answer those questions: I’m a journalist, it’s not my job to try to dictate the specifics of policy decisions. My job is to raise the issues and essentially say, Discuss. This is what I did with The Immortal Life, and it’s what I did with this OpEd.

        My article is not about “the privacy of family,” as you say above. You’ve been making it about “family” in your posts here and on Twitter, but my article is about what happened to the Lacks family in this case, and the questions it highlights about general issues surrounding the privacy of people’s individual genetic information, and the (widely acknowledged) holes in current regulations and guidelines surrounding that. Once again, as I said above and in my replies to you on Twitter: The Lacks family’s story is very unique. Dismissing their history and turning this into an argument about logistics of how many generations of any given family you’d have to ask in order to consent people for genetic sequencing distracts from (and I’m afraid perpetuates) the larger issue.

        As I say nearly every time I speak, and in the OpEd you link to: the big issue here is about consent and public trust. Over the last three years since my book has come out, I’ve talked with thousands and thousands of people about this. The message from the public is clear: People want to be asked permission before scientists do things like using their cells in research, or sequencing and publishing their genomes. Most people, in the end, will give their consent and let scientists do whatever research they want and need to do. People just want to be asked. They don’t want to find out after the fact that scientists are doing things like this without people’s knowledge. When that happens, it damages public trust, which is something no scientists wants.

        • Posted March 24, 2013 at 12:46 pm | Permalink

          Sorry. Maybe you didn’t mean it, but how can you possibly argue that this wasn’t about family when the nutgraf of your story ends with: “Now they may finally help create laws to protect her family’s privacy — and yours.”

          • Posted March 24, 2013 at 1:20 pm | Permalink

            As I said to you on Twitter: Please, this is reaching now. The point of the story is that there are (as I’ve said several times here now) many widely known holes in the regulations regarding the privacy of DNA, etc. Fixing those holes can protect your family — meaning it can protect you, your kids, their cousins, and the whole freakin world (well, at least this country if we’re talking US regulation) via everyone’s own individual DNA. The point of that sentence was that maybe this experience the Lacks family went through will lead to finally closing the holes in those laws, which will protect everyone. Period. End of discussion on my end.

  2. Posted March 24, 2013 at 6:43 am | Permalink

    If I can get in here between your discussion, let’s put aside the fact that this is Henrietta Lacks’ genome.

    If I chose to make my genome sequence public, does my daughter have a legal right to bar me from doing so?

    • Posted March 24, 2013 at 7:47 am | Permalink

      That was the question I was trying to ask. If this is about current invasion of privacy where was outrage about lack of consent of Craig Venter’s family and Jim Watson’s and …

      • MarkB
        Posted March 25, 2013 at 7:33 am | Permalink

        When I read Skloot’s Op-Ed, I immediately thought of exactly the point you (and David Kroll here) bring up. When I read your discussion above, I nodded my head. When I read Skloot’s response, I scratched my head. The question is a simple one – her response is obtuse. Suddenly, after having written a book on the topic, she suddenly throws up her hands and plays the ‘discuss’ card. As if, having made a career out of the topic with a book (and now an Op-Ed), it never really occurred to her to consider the matter herself.

        • Posted March 30, 2013 at 4:25 pm | Permalink

          I’m a journalist, it’s not my job to tell people what to think. Putting a story out to the world and saying, “Discuss” is precisely what I did with The Immortal Life, and it’s what I’ve done with this OpEd. This is not a new development, and it’s not me throwing up my hands.

          • Posted March 30, 2013 at 4:56 pm | Permalink

            I’m confused by this stance. I liked your book precisely because you DIDN’T just throw stuff out there and tell people to discuss it. It was unambiguously clear from the way you structured and wrote the story – especially by including yourself in it – that you felt very strongly that Henrietta and the Lacks family were poorly treated by science and scientists. Just like it’s pretty clear from your op-ed (or whatever it formally was) that you thought the people who sequenced the genome should have asked the Lacks family. Of course I completely agree with you in both cases, but I find it kind of bizarre that you’re trying to argue for a kind of journalistic remove when it’s precisely the lack of that remove that made your book successful.

    • Posted March 24, 2013 at 8:23 am | Permalink

      This point should be the crux of the discussion and it is even more general. When we think of privacy, it doesn’t stop with family, it includes all those who are privy to our personal information. This is true in facebook and it is also true in genetics. Where do we set the threshold of who has a say on the matter? Why stop at family ties? in any case, how far off a relative has a say?.We are all genetically connected and that is great. The sequencing of Watson’s or Venter’s genomes made a lot of my own genetic details public but it helps understand a lot of my own genetics. So where do we put the line? If we put this line anywhere, we are saying that some genetics can be private. Which opens the doors for the patenting of genes. My two-cents.

    • Konrad
      Posted March 24, 2013 at 10:49 am | Permalink

      If I chose to make my genome sequence public, does my daughter have a legal right to bar me from doing so?

      This discussion so far has been horribly US-centric because this depends on the country: In Germany, yes, your daughter has that right. In most other countries, probably not. But the publishers of the paper did consider that question – albeit briefly – and decided that this issue wasn’t relevant here due to the genetic aberrations in the HeLa cell line.

      • Posted March 24, 2013 at 12:54 pm | Permalink

        This isn’t about laws. It’s about what’s right and wrong.

        • Konrad
          Posted March 24, 2013 at 1:10 pm | Permalink

          David asked specifically about the legality, and some of the discussion online is about precisely that point (e.g. Collins’ comment in NYT op-ed).

  3. J
    Posted March 24, 2013 at 7:31 am | Permalink

    Mike,

    I think that you’re quite wrong, both about what Skloot believes and about the ethics of the matter.

    Let’s say that I’m the matriarch of a large family. I have the right to do what I want with myself and my possessions, even if that hurts my family. I can give all my possessions away to charity (thus depriving my descendants of them). I can write a book about my family (infringing on my family’s privacy). Now let’s say that I died, without deciding what to do with all of my possessions or the manuscript of family secrets that I left sitting in a trunk in the attic. Who decides what to do with them? The descendants. They can give away my possessions or keep them. They can publish the manuscript or burn it. As a matter of principle, it becomes my family’s right to decide what to do. So the analogy to Watson or Venter isn’t appropriate. They’re allowed to act in a way that ultimately infringes on their family’s well-being, just as I’m allowed to act foolishly with my own belongings. But once they or I die, the rights to me and my belongings pass to my descendants. Who exactly gets veto power over publishing my genome is an interesting and difficult question – but the fact that it’s difficult to draw a line somewhere absolutely does not imply that the line shouldn’t exist.

    I was also wondering – you say that we shouldn’t be using Hela cells. What steps have you taken to advocate that no labs at Berkeley or at HHMI use Hela cells? This is something that I could get behind.

    • Posted March 24, 2013 at 8:14 am | Permalink

      First of all, I don’t think you’re right. When someone dies, the right to make decisions about their possessions does not pass “to their descendants”, it passes to a specific person or persons designated as trustees. If we’re going to take a legal approach, then it’s not the Lacks family, but one individual.

      But in any case, that is a relatively narrow thing that has to do with the use of tissue from people who did not consent. The real issue is whether anyone gets any rights to object to the publication of data from a person who has consented. These are entirely separate questions.

      • J
        Posted March 24, 2013 at 10:12 am | Permalink

        … if you die without specifying trustees, your trustees are your next-of-kin. Come on, Mike!

        If the real issue is “whether anyone gets any rights to object to the publication of data from a person who has consented”, I’m not sure why you objected to Rebecca’s column? No one consented. But if you’re still worrying about the Watson/Venter examples, how’s this for an answer: no. They get to publish their own sequences, even if it reveals that their descendants are at high risk for heart disease/breast cancer/Huntingtin’s/etc. But if Watson dies without consenting to sequencing, then I’m fine with his next-of-kin making that decision for him.

  4. Mary
    Posted March 24, 2013 at 7:46 am | Permalink

    My grandmother died of cervical cancer in 1951. I’ve thought a lot about how it would have been if Gertrude’s cells were being used in labs. (I’ve used HeLa cells myself, by the way.) I’ve looked at the HeLa genome data. And I’ve looked at my own, some of which carries Gertrude’s legacy.

    If it was my family: I think I would have wanted to be told about the project. A conversation with the researchers and the family about the benefits and risks should have occurred.

    I would have liked to have been notified about the impending publication. A pre-print would have been wise. Acknowledgement of the family and inclusion in the release would have diffused a lot of this.

    I’m not sure I would have expected to have the right to withhold consent, though. And I would not have withheld consent.

    This is an important conversation to have right now though. And I’m glad to see it happening.

    • DrugMonkey
      Posted March 24, 2013 at 9:05 am | Permalink

      Would you withhold consent if you were carrying early onset AD genes and trying to get married to someone who valued robust offspring? Or if your children were?

      Very easy to say you’d be ok with publicizing genomes until you think of specific scenarios that would cause changes in life choices of serious import.

      • Posted March 24, 2013 at 9:11 am | Permalink

        Very easy to say you’d be ok with publicizing genomes until you think of specific scenarios that would cause changes in life choices of serious import.

        yes. but there’s a flip side. a friend had a rare genetic predisposition which was diagnosed and treated partly because he aggressively pushed his genome in front of researchers’ faces. ultimately this less a utilitarian issue than a normative one.

      • Mary
        Posted March 24, 2013 at 9:36 am | Permalink

        I don’t think the consent is mine to withhold on a grandmother’s genome.

        It’s not easy to say. I’ve wrestled with this firsthand with some information in my own data. And I won’t make my own information public. I strongly advocate–and have pressed for–legislation that prohibits the misuse of genetic information for discrimination, marketing, etc. But I also don’t believe there is real privacy possible.

        However, I also don’t think I have the right to keep my sister from publishing her information if she wants to. She is very much into genealogy and the risk is real.

  5. Chad
    Posted March 24, 2013 at 1:00 pm | Permalink

    So after having read about all this, I’m curious as to do you think there is a point at which consent is no longer needed, when working with something like the HeLa cell line?

    If the line is still being used in 20 years and some one is publishing something new based on it do they still have to track down the ever expanding family & get there consent?

    • Posted March 24, 2013 at 1:35 pm | Permalink

      It’s an incredibly difficult problem even for people who have consented to everything they can imagine, because invariably something they couldn’t imagine comes along. I don’t think there’s any perfect solution – something, either the ability to do research or the ability of an individual to consent to use of their tissue.

    • UnPhased
      Posted March 25, 2013 at 1:13 am | Permalink

      Today, both physicians and researchers obtain consent to use patient material when samples are collected. Depending on the circumstances this can be fairly complicated. The recipient lab has to be licensed (procedures depend on the laws of particular countries), there can be additional chain of custody documentation when material is transferred from clinic to lab, and generally there is a fair amount of bureaucracy. The level of regulatory oversight is what you would expect and the process is well managed. So, pretty much exactly the opposite of the wild west free-for-all depicted in the popular media.

      If the research is fruitful, there comes a time when the results are shared for review and continuation by other labs. When the results are published, whatever is associated with the paper must be made available to others. This is what people are referring to in saying that HeLa is in the public domain. It means that other qualified researchers can request the cells once they have been reported in the literature. This is really key to doing good science, because it means that independent labs can verify each other’s results using the same research material, and thus the same frame of reference.

      Your question about continued pursuit consent, possibly for different types of work, is a good one. This is indeed a complicated issue as Michael points out. It is essentially impossible to predict all future applications where patient samples might be employed. But generally there is only one point where consent applies, which is before the material is actually used. All downstream use is covered by the initial declaration of consent, precisely because others may need to use the material and consent cannot be repeatedly obtained ad infinitum. It is therefore the responsibility of the original researcher to obtain proper consent for patient samples prior to their use and description in the literature.

      Failing that – which today would not occur but we’ve seen it happen with HeLa – consent should be obtained before publication, when the material becomes freely available by default. I should note that making research assets available to anyone isn’t an absolute requirement; protocols can be established for controlled access to sensitive materials. Such restrictions do entail a barrier to the scientific process, but they are necessary in some cases. Usually this is relevant when some level of confidentiality or obfuscation of patient details is required, or when the distributing party needs to ensure that the researchers who propose to use the material are qualified and have a good reason for the request.

      If things had gone the way they usually do, consent for research use of Henrietta Lacks’ tissue sample(s) would have been requested at the outset. That never occurred, largely because there was no precedent for the use of human cell lines. The researchers involved had been trying for nearly two decades, unsuccessfully, to get mammalian cells to grow outside the body. Nobody had any idea whatsoever that a renewable cell line could be cultivated indefinitely at all, let alone from a problematic and clearly unwanted tumor resection. Keep in mind, we’re talking about tissue that would normally be discarded. It is tempting to apply today’s ethical standards to historical cases, but even the most morally centered person of 1950 could be forgiven for assuming that once a tumor had been removed, the patient’s family probably wouldn’t be interested in what became of it.

      Because consent was never obtained, and because the cells were subsequently distributed to other research labs, any chance to amend the situation quickly evaporated. This is a debate that should have occurred 60 years ago, but since it did not I’m afraid the matter is settled at this point. It’s just over. HeLa fell through the cracks of what is today a very thorough system.

      Thankfully, we don’t know of any other circumstances where this occurred. All of the standard cell lines in use today have been obtained from anonymous donors; nobody knows who they were. And that is really the larger problem with HeLa: we know the identity of Henrietta Lacks as the original patient, and in fact this has been widely publicized. If she had remained anonymous, use of the HeLa cell line would not be an issue today. It would still be true that consent was not obtained, and of course that would be equally unfortunate. But without knowing the patient’s identity that information would be lost to history – along with her story.

  6. Posted March 24, 2013 at 4:12 pm | Permalink

    If you provide information you wish to remain confidential to another individual without any agreement–implicit or explicit–for maintaining that confidentiality, then you have no legal or moral right to later demand confidentiality. This idea that lineage relations create a right to confidentiality in someone else’s genome is sheer lunacy.

  7. Jim Woodgett
    Posted March 24, 2013 at 4:28 pm | Permalink

    Does anyone know if the NCI-60 collection of cancer lines were all derived with original patient consent? I’ve searched the NCI website and elsewhere and can’t find this information. I’m assuming they were all consented but that’s perhaps not a wise assumption to make.

    http://discover.nci.nih.gov/cellminer/home.do

  8. UnPhased
    Posted March 24, 2013 at 7:06 pm | Permalink

    It’s good to read a sober review of this. The NYT article is written in the somewhat inflammatory “science is evil” style, which only serves to incite fear and emotional reactions.

    Of course we should care about patient rights, no one disagrees with that. Sadly, this patient’s rights were forfeited decades ago and her cells are now in use all over the world. That is a hard pill to swallow, but it has been accepted by Henrietta Lacks’ descendants that it has led to major contributions to medicine. The family has repeatedly stated their desire for the HeLa line to be used for biomedical research.

    It would have perhaps been a nice gesture to ask them before sequencing the cells, but I don’t believe they can either offer or rescind permission at this point. A more realistic goal would have been to explain to them the implications of the work, mainly to assuage their fears about how the information might be used by unscrupulous parties. This seems to have been the opposite goal of the NYT piece.

    There has been a lot of “Oh, but come on, after all they’ve been through!” from the peanut gallery, and that is certainly a natural reaction. But the reality is that there is no ethical violation whatsoever in using the cells and sharing that information — even the genome sequence. There is no mandate to consult a review board on the use of these cells as they are in the public domain.

    It also isn’t clear how discussions with the Lackses would even have been mediated. Scientists (outside of research hospitals) typically have no channels through which to seek out patient families for any reason.

  9. BMORETRUTHFUL
    Posted March 25, 2013 at 10:25 am | Permalink

    Rebecca,
    Come on now !!! How much funding have you turned over to the Lacks heirs from your book? * Very sad, that the photo Skoot used in her book was even copyrighted away
    from her heirs reach.

    Skoot, think you should find a way to give the Lacks back the rights to their own mother’s
    photo….how about that.

    • Posted March 30, 2013 at 4:14 pm | Permalink

      The Lacks family holds the copyright to all of their family photos, it is reprinted it in the book (with the family’s permission), but I don’t hold any copyright on that or any other photo of Henrietta. And you can find the answer to your question about how they’ve benefitted from the book at http://www.rebeccaskloot.com/faq

  10. Douglas Elliott
    Posted March 25, 2013 at 4:22 pm | Permalink

    It seems the concepts in tort law of right to publicity and invasion of privacy are more relevant than focusing on consent or merely some loose expectation of privacy. Anyone who has consented to cancer surgery or merely shed DNA in a public place has probably lost the strict expectation of privacy in the informational content of their genome and so the issue of consenting to share that information is moot.
    What could survive and be inherited or implicate family is the common law or statutory right to avoid being damaged by the public release of embarrassing or harmful private information or having third parties profit from the use and publication of distinctly personal likeness or perhaps genetic information.
    Even though fred astaire consented to being filmed, his heirs were able to maintain an action to prevent the manipulation of the distinct informational content of his personality to sell dirt devils.

  11. Ayse
    Posted March 26, 2013 at 11:11 am | Permalink

    As a basic science researcher (I only do epidemiology now), I used HeLa cells in my work and I am truly grateful to Henrietta Lacks and her family for their generosity – consented or not. However, I can assure you that most people, who use the cell line, do not know where they came from – at least prior to Ms. Skloot’s book. This is quite normal for we use all sorts of cell lines and hard to take a moment to think where each came from. However, I believe giving a story to it makes it more human and gives a more meaningful purpose to the research. Thanks to Ms. Skloot for that.

    On a smaller scale, this fascinating and lively discussion represents one of the medical ethics challenges of our times: how divided the consensus on the genomics research and privacy issue is. We have been struggling with this problem in the research that was completely limited to just one person; now we are adding all the current and future generations – problem grew exponentially! Getting even closer to a resolution to this enigma will require a drastic cultural change and paradigm shift. I believe the social media generation will have a lot less problem with sharing their genetic information and will modify the insurance and job schemes accordingly. Of course, all solutions are circumstantial and following generations may have different issues to deal with.

    In the current environment, however, we must decide who has the right to consent donating one’s own genetic material for research. It is paradoxical to get the consent of the current family members (assuming you can locate all of them) and not to consider future generations. If we take measures to protect future generations, there will not be much scientific progress involving genetic information. As an individual, I will not have the right to participate in a research that I believe my genetic material can make a contribution. This will be taxing on people’s generosity for contributing to the genomic science. In this context, we have to understand how to value each component of using genomic information – specifically in furthering humanity while addressing some the scientific challenges such as finding cure for diseases and preventing some of the debilitating health conditions.

    I personally believe we should start working on anticipating the predicaments such as discriminations, which would result from identifying people through a piece of DNA, and start making policies to prevent them from happening and protect people if they happen. The easy access to genomic data is a new uncharted territory and everyone is confused and unsure about the cost/benefit profile of our actions ranging from donating the DNA to putting it out there for science. Good news is we are discussing and although in baby steps, we are learning. In that sense, you both agree :)

  12. 17genr
    Posted April 21, 2013 at 4:00 pm | Permalink

    Henrietta Lack was a black lady who worked at Hopkins in the
    late 1950s. She died around 1965 or so while she was still
    working there. . . [from] a tumor of the uterus that literally ate her
    alive. And that tissue was the first human tissue that was grown
    in perpetuity in tissue cultures. Because up till then, they would
    only grow one or two divisions and then die, and her tissue called
    HELA – that’s where HELA comes from, Henrietta Lack – was
    the first [cancer cells] that would grow in tissue cultures.
    Now those cell lines were sent all over the world, and what
    happened was that scientists were contaminating their tissue
    culture cells with HELA accidentally. And in the early 1970s, I
    think ’72 under Nixon, the Russians sent us six cell lines that they
    thought contained human cancer-causing viruses. And those were
    sent to Walter Nelson Reese who was the keeper of the cell lines
    in the United States. He was in San Francisco, and it was his job
    to keep the cell lines straight and not contaminate them. That was
    [during] the great “war on cancer,” that’s where all this stuff came
    from. The NIH was funded in ’72 with billions of dollars to find
    the cancer virus. . . . Nixon was trying to steal the show from
    [Teddy] Kennedy by coming up with a virus and vaccine against
    cancer. They said, “Let’s find a virus.” So that’s where the big
    cancer virus hypothesis came from.
    Now when we got these six cell lines from the Russians. . . Reese
    started looking at them and discovered that they were all female;
    then he discovered that they were all black. And so he
    questioned, ‘How many black females are there in Moscow who
    have cancer?’ And, of course, what he discovered was that these
    were all Henrietta Lack cell contaminants that contained monkey
    viruses. And so all that stuff the Russians sent us was in fact a
    fraud. But. . . it was a very embarrassing thing because they
    thought they had got there first, and what we proved was that
    they were awful scientists.
    So then what Walter Nelson Reese did is that he started looking
    at all the cell lines of the United States, and closely. And [then
    he] discovered that at the NIH, over a third of them were HELA
    contaminated.
    What happened was that when they would open their tissue
    culture lids, they would aerosolize small particles into the air.
    They would float around and drop into another cell line, and
    HELA’s so aggressive that it will literally take over. And so it
    just takes one cell to drop into another cell line and it takes over,
    and it amalgamates, and those were called HELA contaminated.
    And so what the NIH did to him [Dr. Reese] was, of course, defunded
    him and put him out of business. Because he proved they
    were all a bunch of idiots.
    LEN: Oh – I see.
    ROBERT: So then the problem was you had a whole bunch of
    HELA-contaminated cell lines floating around and being sent out
    as clean cell lines and they weren’t; they were actually human
    cancer malignant cell lines, and some of them contained viruses
    that were from other species.
    And so it represented a big problem. Plus, they were throwing in
    fetal calf serum which was contaminated with these bovine
    viruses.
    So you had a mixture for a natural [disaster]. I mean, the thing is,
    like they said in the ’72 conferences, it’s a wonder that we don’t
    have worse disasters. You just wonder why we haven’t been
    annihilated by these idiots.
    If, for instance, you look at the tissue cell culture that was used to
    determine x-ray tolerance of human tissue, it turns out it’s a
    HELA-contaminated cell line. Which means the most radiationresistant
    cell line in the world is used as the standard to determine
    how much radiation a human should be exposed to!
    LEN: Unreal.
    ROBERT: Well, that’s all documented in ‘Conspiracy of Cells’ by
    Michael Gold. . . . Walter Nelson Reese now runs an art gallery.
    They put him out of business. . . . (An Interview with Dr. Robert Strecker)

  13. Melissa Phillips
    Posted August 10, 2013 at 12:49 pm | Permalink

    A bit late on this one, but it also seems to me that there are two separate issues here: 1. Lacks was not asked for consent to use her cells, and 2. family members of an individual who *does* give consent still may wish to prohibit publishing that information.

    I understand that the Lacks family is concerned about their genetic privacy, but the real core of the problem is that Lacks did not give consent. So her family may have some right to control over her cells that other families would not have, because their relatives *did* consent.

    I agree that discussing the two issues together conflates them. Answering the question of how the Lacks family should be treated will NOT answer the question of how other families (with proper consent!) should be treated.

  14. Rey Craig
    Posted October 6, 2013 at 3:17 pm | Permalink

    I have a degree in journalism and an MPA (Masters of Public Administration). I will be applying to medical school in the near future. I am also a former army officer with several years xperience writing detailed reports to my superiors.

    Reading this blog was entertaining. However, I also concur with Ms. Skloot that it is misleading. I do not see anywhere in the book where Rebecca clearly states “any specific answer to that question about gene-sharing family members” (as she said in her responses to this blog). Instead, the blog writer’s personal interpretations of her writing are discussed.

    Readers will always be open to their own interpretations regarding articles or books written by an author or journalist. However, when an author or journalist specifically states what he or she was thinking, then its pointless to argue. The author or journalist knows exactly what he or she meant when writing the article or book. There is no way to prove that the author/journalist meant something else.

    The only thing that can be accomplished in such a case is to highlight passages which seem ambiguous to the reader. That is what appears to have happened between the blog author and Ms. Skloot. However, Ms. Skloot clarified what she meant which should clarify any ambiguity and negate any argument on the part of the reader (in this case the blog writer).

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