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Henrietta Lacks and “Enchanting Rhetoric”

7 Feb, 12 | by Iain Brassington

Note: There’s a couple of errors of interpretation in this post.  I’m not going to re-write it, because I wrote what I wrote, and it’s in the public domain, and I don’t think it’s all that dignified to pretend that one never makes blunders; it’s better to acknowledge them, take the hit, and move on.  But please do have a look at Rebecca Skloot’s response in the comments, and at my answer to her. – IB, 8.ii.12

*     *     *     *     *

Since I read it in the autumn, there’s been a few things nagging at the back of my mind about Rebecca Skloot’s The Immortal Life of Henrietta Lacks.  A few things that don’t seem quite right somehow; and prompted by Pär Segerdahl’s post on The Ethics Blog, I’m tempted to see if I can put them into words.

For those who haven’t read the book, it deals with the story of how it was that an apparently immortal cell culture line, HeLa, was obtained.  The cells were taken from a cervical tumour that went on to kill one Henrietta Lacks, a poor black woman who lived near Baltimore.  During the course of her treatment, a sample of cancerous cells was taken for testing, as was a sample of healthy cells.  (“HeLa” gets its name from the convention of naming culture lines by contracting the name of the person from whom they’re derived.)  These biopsies were apparently unconsented.  But what’s important about them is that, whereas most cell lines at the time died fairly quickly, the cancer sample kept on dividing and dividing.  The HeLa strain proved to be important in all kinds of areas of research.  Doubtless, some of this research has made some people very wealthy.  Yet Henrietta’s descendents have seen none of this profit.  Indeed, many of them are not much more enfranchised today than a black woman would have been 60 years ago; they weren’t even aware that there was such a thing as HeLa.

So what’s the problem?

One of them is definitely stylistic.  I have problems with something that Skloot thinks is a virtue, which is that “dialogue appears in native dialects” (xi).  I don’t share the notion that it’s in any way dishonest to polish out people’s linguistic infelicities, just as one would polish out all the ums and ahs and placeholders in everyday speech.  And I can’t shake the feeling that the professionals who get speaking parts in the book have had their speech tidied; though it’s probably true that the higher your social status, the less susceptible you are to malapropisms, I don’t believe that the educated people directly quoted in the book were always grammatically perfect and never used colloquialisms.  But this is a minor quibble.

What’s more nagging – and potentially more interesting from an ethicist’s point of view – is a question about why any of this is particularly important. Stories about unconsented research are not hard to come by; so are stories about racism in the US; so are stories about the medical disenfranchisement of the poor.  Very often the latter two categories overlap; occasionally – as in the Tuskegee syphilis experiment – all three do.

In Lacks’ case, the unconsented biopsy is the sort of thing at which we’d look askance nowardays; but by the standards of the day, it was not seen as a problem – and even to modern eyes, I don’t think it’s particularly gratuitous.  And, indeed, Skloot’s emphasis is on what happened afterwards – to the cell line, and to the rest of the family.

And here’s the question that I can’t shake: what does it have to do with the family? Why is there a problem?  I mean: I’ll happily go along with claims that there’s something very morally troubling about the fact that some people are, in effect, too poor to afford medical care.  But that’s an ethical claim in its own right, and has nothing to do with biopsies and cell cultures.  If they have a right to healthcare, then they have a right to healthcare.  But they’d have that anyway.

Do they have any right to benefit from the research done on the cells derived from their mother’s tumour, though, beyond the benefit that we all might derive?  This would depend on answering a couple of other questions.  One of them has to do with whether a person has any right to inherit assets from deceased members of their family.  The other is more important, and has to do with whether any part of the intellectual property generated from research done on cells obtained from a person can be treated as an asset of that person to begin with.  (I can’t help but to be reminded of this story in The Onion here…)  If the answer to that second question is no, the first is moot.  If the answer is yes, the answer to the first may nevertheless be no.

So: could we treat the IP generated by HeLa research as an asset to which members of the Lacks family might have a claim?  Not as far as I can see.  Suppose Henrietta had survived to a ripe age – having been born in 1920, it’s not implausible that she could still be alive today.  And imagine that she had no idea of the existence of HeLa and what it made possible.  Quite possibly, we’d want to say that she’d been wronged by virtue of having been subject to an unconsented biopsy.  But beyond that, things get murkier, not least because the interesting things – the ever-reproducing cells – were something that she would presumably want to have been rid of in the first place.  Had she said that she wanted to keep in her possession as many cells from her body as possible, then taking the tumour and culturing it might have been a violation of that wish, and might generate moral criticism.  But that would be an extraordinary supposition: people do not generally want to keep tumour cells.  It’s so extraordinary that we can assume that, unless they specifically say to the contrary, they don’t want to keep them.

So even if Henrietta Lacks were alive today, it’s not a given that she’d have any claim at all over any of the IP generated by work done on cancer cells taken from her.  The claim of members of her family is weaker yet.

Skloot’s book seems to rely on the idea that the mere fact that something (like a cell) has come from our body is significant, and that we have an interest in it.  I’m not sure that that’s right on either front.  But even if I’m wrong here, it doesn’t follow that we also have an interest in what comes from what comes from our body (something like a cell culture generated from that cell), or in what comes from what comes from what comes from our body (like IP generated from a cell culture generated from a cell).  And it certainly doesn’t follow that my family has any abiding interest in what comes from what comes from my body.  Even if Henrietta did have some claim over HeLa cells and – less plausibly – the products of the research done on them, it wouldn’t follow that that right is heritable, any more than the children of a great author are entitled to receive the Nobel prize on his behalf after he’s died simply because his work was so great and they’re his kids.  Less so, in fact, since a cancer patient is overwhelmingly likely to look on her cancer as something she would rather be without, and a Nobel laureate is overwhelmingly likely to look on his oeuvre in completely the opposite way.

The story of HeLa cells is fascinating.  The story of the lack of access to healthcare and the general disenfranchisement of whole swathes of society is urgent.  But getting the two to gel doesn’t seem to me to work; we don’t need a family history from which to hang either of these stories.

I’ll leave the last words to Segerdahl, because he asks some very good questions:

Is it not wonderful that she was anonymous (until the publication of the bestseller)? Is it not splendid that scientists speak of “HeLa cells” and not about “Henrietta Lacks’ cells”? Wasn’t her integrity protected that way (until the publication of the bestseller)?

We don’t know how Henrietta Lacks would have described her destiny. Would she describe herself as a victim of science (rather than as a victim of cancer, for example)? Or has she become one of the most recent victims of the enchanting rhetoric of the victim?

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  • Rebecca Skloot

    This post was sent to me on Twitter, and though I don't respond to reviews as a rule, I can't resist replying to this one because its author has missed several essential facts, thus skewing the presentation of the story. Responses to the HeLa story that focus on the original sample being taken from Henrietta without consent and whether the family is owed anything in return miss the ethical heart of the story. When asking the question, “what does it have to do with the family?” these are just a few of many relevant facts to share with readers: In the 70s and 80s, scientists conducted research on Henrietta's children without consent in order to learn more about HeLa cells (and without responding to their requests for information about HeLa cells: what they were, what they did for science) — this made Henrietta's children a second generation used in HeLa research without consent. Also: Their family's medical records were released to the press and published without consent both before and long after HIPAA. Henrietta and her family were not anonymous before the publication of the book — they lost their anonymity and privacy in the 70s when scientists began publishing Henrietta's name and medical records, and doing research on her children. For my answers to questions about why the story of Henrietta and her family is important for scientists and the general, why I quoted the family verbatim, and much more, see http://www.rebeccaskloot.com/f

  • http://www.bioethicsbulletin.org/ Alan Regenberg

    Interesting post. I see your point, re: dialects, but I'm sympathetic with Skoot's stylistic choice – I think Baltimore's urban dialect is more of a patois – a language/dialect in its own right more than bad grammar. Though – making a stylistic choice here is a a bit of a no-win situation as this is all rooted in the same race/class inequities that were such a big part of the original story and continue today. 

    The complexities of Henrietta Lacks' story are what I find particularly engaging. e.g., while it's a tale about racism and access to care – Ms Lacks was able to receive state of the art care (such as it was) from some of the best docs available at Hopkins (albeit in a segregated ward). Also, while careers have built on HeLa cells, and profits have been made – the cultured cells were never patented – they were shared quite freely with other scientists. (so, even if one believed that descendants had a right to a share of profits, those profits aren't conveniently located with a single entity.)

  • http://nathanemmerich.org.uk/ Nathan Emmerich

    You appear to treat Skloot’s book as something it is not. It
    is a piece of pop-science, or public communication of science (and, for that
    matter, bioethics). Therefore it has a literary dimension. Or, rather, it has a
    literary dimension native to this type of writing and not native to academic
    bioethics, medical science or whatever other literary genre. You confuse
    presenting dialogue in ‘native dialect’ – either the native dialect of the
    Lack’s family or that of the scientists and medical professionals – with
    erasing linguistic infelicities. It is likely both have had linguistic
    infelicities erased. You conflate the right way to speak with ‘how medicine and
    science (and bioethics) speaks’. This may be the case but Skloot has not
    ‘corrected’ the speech of scientists and not the ‘native dialect.’ Rather her
    choice to present dialogue in this way is meant to communicate something about
    the relative standings, power and ‘right to speak’ about the Lack’s (et al) and the scientists. It is
    interesting that you have not picked up on this literary device.

     

    Your main point seems to based around the question ‘what
    does it have to do with the family?’ Which you seem only to be able to address
    in terms of IP rights. As Skloot’s book makes clear making money was of no real
    concern to the Lacks family. Rather it was with understanding what had happened
    to their mother. One obstacle in the way of this appeared to be the concern of
    scientists that the Lacks family would seek financial reward. This concern also
    cuts to the heart of Segerdahl’s claim (which presumably you concur with as you
    repeat it) that no one knew about Henretta Lacks prior to the Skloot book.
    Again it is made abundantly clear in the book that for a long time prior to
    Skloot’s investigation the family knew something had happened they did not
    understand what had happened. They knew that their mother’s cells were
    important and being used in scientific research, and made enquiries. Indeed
    scientists made enquiries of them in the 1970s. Although, again, their understanding
    was incomplete at least compared to what Skloot has to offer. There were even
    stories in the popular and specialist press about Hennrietta Lack’s prior to
    Skloot’s book therefore the idea that it was Skloot that compromised Lack’s
    anonymity, her integrity and made her into a victim is laughable.

     

    If we are going to talk about Hennrietta Lack’s integrity,
    or more accurately that of her family, and if they were a victim of science or
    something else (and Skloot reports the family’s difficulty with reporters other
    than herself and, admirable, her own reservations in pursuing the story) then
    it would seem that we might be best served by asking the family. The
    designation of the relationship between individuals and the biological material
    taken from them for the purposes of science is one determined by science and
    bioethics. However what if individuals, their family’s and the wider public do
    not wish this to be the basis of the relationship? What troubles the Lacks
    family in ‘The Immortal Life’ seems to be this silence. That they do not know
    what is happening, has happened or why. In part the denouement is when they are
    properly, and in a manner that they can understand, introduced to ‘the
    science.’ A lot appears to hang on their realisation that HeLa is not their
    mother per se but some mutated, cancerous, cells which differ from those of
    Henrietta Lacks even though that is their origin.

     

    The ‘bioethical’ suggestion here seems to be that if only
    the origin of HeLa cells had remained secret there would be no ethical issues –
    apart from an unconsented biopsy which was standard practice of the time,
    regrettable, and no longer happens (although it is not entirely clear whether
    this latter is the case and certainly one can never fully inform a patients
    about what will be done with their material because, as with HeLa, the full
    properties of the cell line may not be clear until investigated). It is clear
    from wider public debates that people do demand the right to know what happens
    to their biological (and genetic) material. Shouyld this be simply ignored? The
    question is one of the cultural relationship between biomedical science and the
    society of which it is a part.

     

    Furthermore, it is not clear if relations have no interests
    in the material, even on a biomedical reading. The case of genetic material
    being the obvious example, indeed the example at hand. The relevance of
    familial relations and their interests is not a simple question to pose or
    answer as proven by researchers attempting to contact the Lacks family in the
    1970s. It may be that scientific research will require further samples from the
    family or may discover things relevant to genetically related individuals. In
    such a light to say that such material is solely relevant to an individual and
    not their family is to misrepresent the scientific facts. This is not even to
    mention the social and cultural importance such material has to relatives. Bioethics
    might have dismissed these as ‘hard’ ethical concerns but this is not the same
    as suggesting that ignoring them entirely is ethically acceptable. Again,
    bioethics must acknowledge that biomedical science is a part of a society and a
    culture and must fulfil its responsibilities as such.

     

    You treat the issues raised by ‘The Immoral Life’ as if it
    is a matter of the objective nature of science and applied ethics rather than a
    matter of the cultural institution of science and its wider relationship to the
    public and the individuals it relies on for material and, indeed, to
    participate in research. If the book is arguing anything it is for a human(e)
    institutionalisation of the biomedical sciences and for having some respect for
    people and they way in wish they wish to be treated. Interestingly this can be
    redrawn in terms of ‘native dialect’. There is the official ‘morality’ of
    science and bioethics, just as there is an official linguistic dialect. However,
    properly understood, in the cultural sphere this is nothing more than the
    ‘dominant dialect.’ The dominant biomedical morality and the ignored, disputed,
    and rejected public or ‘native’ morality. When these official languages come
    into contact with the native dialect they can either reject them as ‘wrong’ or
    ‘incorrect’ or seek to understand them and deal with them ethically. Consider,
    for example, the contemporary and historical relationship between English and
    Welsh. The official morality of bioethics is designed to address some aspects
    of biomedical research but this is not the same as addressing all aspects of
    biomedical research particularly those who are not privy to the official
    languages of bioethics and the assumptions (scientific literacy) that are built
    into it. This is not to say that we should abandon the official language in
    favour of the dialect; or that they are in some way ‘all equal’ and ‘the same’;
    or even that any and all ‘native’ moral demands must be met. Rather it is to
    suggest that we should respect the concerns of those individuals who come into
    contact with biomedical science and engage with them, discuss with them their
    understanding and relate to them as human beings rather than as biological
    samples.  To often this is a morality
    that bioethics does not capture. 

  • http://twitter.com/drbrocktagon Jon Brock

    Can I be the first person to point out that all of this was discussed in the book?

  • http://www.law.manchester.ac.uk/aboutus/staff/iain_brassington Iain Brassington

    Hi -
    Thanks for this.  You're right that I'd missed the second-generation aspect of the story, and that does make a difference in one sense – it means that we've got a bigger problem with unconsented research.  And, plausibly, it might be a more pressing problem in the case of family members because the cells were going to be taken from Henrietta anyway, whereas that wouldn't be the case in respect of other people.  I also take your point about anonymity – though I think that that's perhaps one for Pär.

    Still, I think that there does remain a puzzle about why it's so important that members of the family should have a particular interest in knowing what happened to the cells and what they did for science.  If Henrietta was wronged in respect of the science, then it's not hard to explain the family tie: members of families tend to care more about each other than they do about strangers.  A relative is, therefore, quite likely to take more of an interest in a wrong done to a family member than in a wrong done to others, and might want to seek redress on behalf of the wronged family member.  And the same applies in respect of subsequent generations.

    But when it comes to questions about the cell culture itself and what it's done  – rather than questions about how it was obtained – things do seem to be different; or, at the very least, they might appear so.  It would have been great if researchers had responded to requests about the cell line; but it would have been great if they'd responded to requests about it from anyone.  It would have been great, but also possibly supererogatory.  Moreover, it's not immediately obvious why requests from the family ought to have been given a particular weight over requests from anyone else.  A familial link might explain why members of Henrietta's family cared about HeLa cells; but it wouldn't tell us about how the researchers ought to have responded.  Without further argument, and granted that they would not have had any especial obligation to respond to comparable requests from members of the unrelated public, it remains an open question concerning whether they'd have had any special obligation to members of the Lacks family.

    Why, that is, do we think that family is special?

    And that is the question that – perhaps clumsily – I'd tried to raise in the OP.  It's a question that I've raised elsewhere on this blog in one form or another, and your book provides an impetus to ask it again.

  • http://www.law.manchester.ac.uk/aboutus/staff/iain_brassington Iain Brassington

    Yes – completely.  There's all kinds of interesting stuff in the book about racism in medicine, and the racial disenfranchisement of a couple of generations ago has mutated slightly into a class-based disenfranchisement (when the disenfranchised class just happens to be largely of one ethnic group, and the enfranchised happens largely to be of another), and so on.  There's interesting questions about how we think of our bodies, and about how we ought to think of them.  And interesting questions about how research is disseminated.  Lots of good stuff in there.

  • http://www.law.manchester.ac.uk/aboutus/staff/iain_brassington Iain Brassington

    Sorry: Skloot herself beat you to it!

  • http://www.law.manchester.ac.uk/aboutus/staff/iain_brassington Iain Brassington

    Heh.  Well, it comes as no surprise to me that we have differing views about the nature of bioethics; and I can't address your post point-by-point here.  However, there's a couple of quick points I can make.
    First, when you talk about the social or cultural importance of this or that, it's still not clear why that's of any great moral significance.  The mere fact that people think something is morally separable from the question of whether what they think is all that (morally) important, or makes all that much (moral) sense.  That is: we can – and probably should – separate what a person thinks from their thinking of it.  It's the former bit that's of interest to me – and, chancing my arm a bit – I think it's also the former bit that is much more important to bioethics.
    And this leads to the second thing.  When you say that “we should respect the concerns of those individuals who come intocontact with biomedical science and engage with them, discuss with them their understanding and relate to them as human beings rather than as biological samples”, it's not wholly clear what exactly you mean.  What does “respect” entail, and where's the argument behind the normative claims about respect and discussion anyway?  What does it mean to relate to them as human beings?  Is the idea that we should not treat people as mere biological samples and nothing else besides anything more than trivial?  And why should we not treat them as biological samples as one aspect of the whole suite of things that they are or may be?  Every one of us is a biological sample; but we're plausibly quite a lot else at the same time.

  • David Curran

    In the “man in the iron mask” one identical twin becomes the king of france the other is hidden away from society in wretched conditions. It is a clever plot device. We feel more sympathy for the man in the iron mask because of his brothers finery.

    Is this book attempting to do something similar. Are we meant to feel more sympathy for one set of Lacks ancestors because the cell line ‘ancestors’ have such a glittering storied medical history? 

  • Pär Segerdahl

    I had the same comment from Rebecca Skloot on The Ethics Blog, so I repost my comment here:

    Thank you for your comment, Rebecca Skloot. Although it largely concerns another blog post than mine, I’m glad you sent it to The Ethics Blog. My post was not meant as a review of the book (and neither was Iain Brassington’s post, I think). I was rather developing my thoughts on a very human phenomenon, namely, the difficulty of thinking freely in the vicinity of powerful “rhetorical figures.”

    The aim of my final questions about anonymity was to liberate thought through a few rhetorical countermoves. Although her identity was known in some circles already before the publication of the book, the anonymity of this person (who meant so much for science and scientists knew as HeLa, although *her name* was Henrietta Lacks) is one of the most emphasized and tempting aspects of her existence as a “rhetorical figure.”

  • Rebecca Skloot

    Thank you for the response and for adding the correction to the top of your post. I go into these questions in detail in the book so won't repeat all of that here. I'll leave the philosophical discussion about why we think family is important to you and your commentors, but I want to add this:

    As I cover in depth in the book's afterward, there are millions people around the world whose cells are used in research without their knowledge.  They don't feel any connection to those cells or request information about them because they don't know the cells exist. Those cells are anonymous.  What's different about the Lacks family is that we know who they are, and they know know about HeLa cells. 

    You seem to be assuming that the Lacks family is unique in their desire to know how their cells are used in research.  That's not the case. The vast majority of respondents in two recent studies said that they approved of tissue research only if it's done with informed consent and transparency, but disapproved if the cells were taken without consent.  This isn't just about family being special — people want to know what's happening with their DNA (which they share with their family members — your mother's cells also contain your DNA). 

    There are many cases we can look at that support that idea that people want to know what happens with their cells and the cells of their family members: The very large long-range NIH study on AIDS super-resisters, for example. Those patients all consent to donate samples, and part of what they're promised in return for their donation is information: They learn which cell line are theirs, they get to follow how those cells are used in various studies, they receive newsletters with updates about how their cells are used, copies of scientific journal articles documenting that research, and much more. They want that information and follow it very closely. The same is true for all the donors of tissues to the largest prostate cancer tissue bank in the world, along with many many others.  Those donors are proud of their contribution to science and they share the resulting information with their children and their grandchildren with hopes that it will help them someday medically, but also so they know that their family is contributing to the good of society. When a donor in these studies dies, the information about their cell line then goes to their heirs. The difference here is that the Lacks family did not know about the cells; once they found out the cells existed (which happened only when scientists came to use Henrietta's children in further HeLa research without consent) they requested the most basic information about HeLa cells (what are they, what have they done for science), and were denied that information time and time again.   

    I explore in the book the many reasons why the Lacks family in particular wanted to learn about the cells.  Here's an important thing to remember when asking all of the questions you're asking:  Everyone feels differently about their cells.  This is why the Lacks family story is an important one for scientists and ethicists to read and discuss. You clearly don't feel a personal attachment to your cells.  I imagine you probably wouldn't mind if they were used in research without your knowledge.  That's totally fine.  There are many people out there who feel that way. But from what I've seen through my two years of constant travel talking to thousands and thousands of people around the world about this issue, I'd say you're in the minority.  For may people, the questions at the heart of the HeLa story come down to how you define life and family, how you define you, how connected you are to your actual DNA. I go into detail about all of this in the book's afterward so won't repeat it here. But there are many religious and personal and even scientific reasons that people feel connected to their tissues and the tissues of their family members.  

    As a rule I don't reply to reviews online — I felt the need to reply to this one because of all of the factual/interpretation issues I've pointed out.  Thank you for addressing them, and I'll now step aside and let the discussion continue without me.  

  • Rebecca Skloot

    PS:  I think it's also important to point out that when it comes to dialect, the “educated people” weren't “always grammatically perfect and never used colloquialisms” as you said. Scientist, native English speakers and otherwise, do indeed speak in their own dialect and use their own colloquialisms in the book, perhaps they didn't jump jump out at you because they're more in line with your own speech, but they're there.

  • SisyphusRolls

    I find it odd how quickly Mr. Brassington just brushes past any property/identity issues associated with Ms. Lacks' DNA in the cell line.  Other than our brains, there is nothing more identifiably individual about us than our DNA in this material world.  To say that our DNA could be alienable without our consent (as might be the case in a sale or donation, for example) is to say that some fundamental part of our identity can be taken without our consent.  Understood that way, it seems intuitively worse than theft of physical possessions, which are less identifiably individual (though of course they too can have great personal or market value).

    The lack of sales of HeLa or a patent make it hard to place a third party valuation on the harm to Ms. Lacks, but it strikes me that this case and others like it (e.g. the Moore case in California) are egregious violations of a person's individual rights to own and control their self.

  • http://www.facebook.com/people/Peter-Rosa/1593565364 Peter Rosa

    It's been several months since I read the book, but one thing I recall is that Lacks did not get inadequate medical care.  Though she was in the “colored ward” of Johns Hopkins, the level of care was no worse than what anyone else would have gotten. She was unfortunate enough to have suffered from an aggressive sort of cancer that couldn't be treated at the time.

  • http://www.law.manchester.ac.uk/aboutus/staff/iain_brassington Iain Brassington

    Hmmm.  Not sure about that; it's certainly not what I take from the book.

    (Also, apologies for the length of time it took your comment to appear: I approved it last night, but that seems not to have worked.)

  • http://www.law.manchester.ac.uk/aboutus/staff/iain_brassington Iain Brassington

    Allowing that there really is nothing more identifiably individual than our DNA, though, doesn't imply that we have any particular stake in it.  That something identifies us doesn't mean that we should identify with it.
    Suppose my face is captured on a photograph of Manchester, and that photograph is subsequently used on the City Council's publicity material.  I think that my face is a much easier way to identify me than is my genome; and it's more likely to be identifiable with or asEven if there is a right to own and control the self – and I'm not sure that I wholly understand what that would entail – it won't tell us anything about DNA, unless you think that DNA and “the self” are logically interchangeable: and they're plainly not.

  • http://www.law.manchester.ac.uk/aboutus/staff/iain_brassington Iain Brassington

    True enough – but isn't at least a good part of the problem not so much to do with the standards of care in “colored wards” as with the mere fact that there were such things to begin with?  Even if segregation came with absolute equality of medical consideration, segregation per se would remain morally indefensible.

  • http://www.law.manchester.ac.uk/aboutus/staff/iain_brassington Iain Brassington

    I'll just pick up on one thing that you say:
    For may people, the questions at the heart of the HeLa story come down to how you define life and family, how you define you, how connected you are to your actual DNA. I go into detail about all of this in the book's afterward so won't repeat it here. But there are many religious and personal and even scientific reasons that people feel connected to their tissues and the tissues of their family members.

    Yes.  Absolutely.  Questions about how you define life and family and relations to DNA and all that are very important and open questions.  For my part, I happen to think that DNA isn't in the least bit important for family, and probably isn't all that important for individuals – not as important as many tend to think.  But the debate is still open on that.

    But while there may be all kinds of reasons explaining that or why people feel as they do, they aren't pro tanto reasons to think anything.  What people think and why is of anthropological interest – ethically, though, it seems to me only to provide the backdrop.

  • Tessa Keough

    As a non-medical, non-science person I read this book and what hit me hardest was the apparent complete lack of concern or lack of understanding for Henrietta Lacks and her family throughout the entire story (with the exception of the last Johns Hopkins' researcher who took the time and made such an effort to explain the process and answer her daughter's questions).  
    Whether this is explained by the state of medical care for minorities at the time, the lack of basic social and interpersonal skills (including some language and/or ethnic differences) of the various researchers and physicians, the failure by Henrietta's family to understand or admit their lack of understanding of what they were (what little was told them appeared to be over their heads), and the failure with address the family members' real fears regarding Henrietta's DNA cell cultures.   

    The issues in bioethics regarding “informed consent,” HIPPA, etc., are real and are on one level BUT for actual people – the patients and their families – the failure of the hospital and medical research professionals is troubling.  Every day in every hospital in the USA, a patient is signing a form, listening to a diagnosis from a medical professional, and/or agreeing to tests that they don't understand and that they are too embarrassed to convey that to the medical professional.  It take a bit more time and effort no doubt – and oftentimes it does not happen.

    In my own family when a niece was diagnosed with cancer we relied not only on what the hospital personnel told us, but taped the conversations and sent them to family members (medical professionals) to help us understand what we were being told.  We read everything we could get our hands on, googled terms and articles, asked questions and read all the paperwork we were provided.  I have a law degree and consider myself intelligent and I found it overwhelming and daunting – I can only imagine how Henrietta's family felt.

    This is what the average person takes away from this book (many thanks to the author for writing about such a serious and thought provoking topic and making it understandable to the majority of us).  In the medical arena, we don't understand, the people we trust to care for us don't explain it to us and/or help us understand, and by the time you or your family member is either released or dies, you are so drained emotionally, mentally and sometimes financially that you just want to put it behind you.

    Added to this (in the book) was the fact that someone or many someones has/have profited quite well from HeLa cells.  It made the original failure of informed consent, the total lack of privacy, the later testing of Henrietta's family members without their true understanding so sad, disappointing and  rather tragic.  

    There has to be a system that could put a percentage of the purchase cost into a fund for education, assistance, etc., of the individual or family members of these “cells.”  We easily put a value on many things in this society and no doubt (our tax dollars) the government has provided much of the research funding through education grants and scholarships, funding through NIH, etc., that we could easily do the right thing.

  • http://www.law.manchester.ac.uk/aboutus/staff/iain_brassington Iain Brassington

    But why would such payments be the right thing?  If I have a tumour, I want rid of it.  If the cells turn out to be useful to someone else, why would I have a claim on the proceeds?

  • Tessa Keough

    Well no one would have had HeLa unless this woman's cells were taken and used by the original researcher to culture (if that is the correct term).  As I recall the original researcher gave it (freely) to others to use.  Certain companies then proceeded to produce it on a large scale and made a killing off it and continue to do so today (and I don't think they added anything of value to it, they simply mass produced it).  
    I am not opposed to anyone making a profit but I do think that some of the monies could go into a fund in any of these situations.  That fund could be used for further research, education, assistance to the person or their family if necessary, etc.  One rather excellent use would be to teach medical professionals how to interact with their patients better, certainly informed consent and telling them what they are doing with their dna.  
    I am sure that the researcher at Johns Hopkins was only able to do his work because of the money set aside by the original donor as well as government grants (that would be taxpayer monies).  We all seem to forget that “assistance” when an individual or a company then proceeds to patent the product for private gain seemingly forgetting the assistance they got from these individuals or our government.  It certainly does not seem out of place to give back a bit – perhaps that is a separate ethical issue.

  • http://www.facebook.com/cynthia.verspaget Cynthia Verspaget

    I think if there is any question about why this story is so important (and not just Skloots recount of it but rather the many HeLa accounts and the many like minded ethical-medical-social stories) it only indicates the disparity between the sciences and those who are utilised in order to inform the knowledge that underpins the sciences. There is essentially a rift needing repair between medicine and the people it ‘treats’. Access to a body is not a right of medicine, it is a privilege. The body is not either/or material/social – it is both. The social story behind the medical one is therefor important in the discourse of medical ethics, social, cultural and racial readings within medicine, and the connections which appear to be omitted between the body and the context our ‘bodies’ reside within – a culture. The blog post above simply exemplifies the necessity for these stories which attempt to make meaning out of acts that societies are clearly concerned about. The book would not have sold if it were not a story of relevance and importance. Again, for clarity – the questions in the blog post above are largely obfuscated by the very fact that society at large considers the story to be relevant and important it should therefore be of importance to scientific and medical practitioners alike. The need to disconnect the body from its social and cultural context by some in the sciences is behind the outrage that exists over such stories – so wouldn’t it be better to talk about those connections and **why they matter** rather than dismiss it as irrelevant yet again? I want to actually know if the questions asked by the blogger were serious or just a vent? If the questions were serious some added reading would benefit Mr Brassington – Landecker, Weasel, Anderson etc would all be of benefit.

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