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
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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?