Each week, Nature's cover advertises its hot revolutionary stories, usually in what they think are cute little tag-lines that would be more appropriate on TV promos. Today, the one that caught my eye as not just forced salesmanship but as inappropriately offensive was:
Down on the bottom left, under the "Ethics" heading,
HENRIETTA'S LEGACY
This was about the use that has been made of Ms Henrietta Lacks' DNA since the cell line from the African-American woman, who died of cervical cancer, was made universally available for research. To compound the history of her exploitation, Ms Lacks was exploited badly in a recent best-selling book, though perhaps most readers were so wrapped up in the story about the Lacks exploitation that they didn't the book itself as yet another exploitation, and recently some agreement was made, in nobly sounding ethical phrases by NIH, about the right to use and publish research on those 'HeLa' cells, and some compensation or decision role of her surviving descendants. So there is a story to be reported, perhaps.
But by what right or moral ground does Nature refer to her as "Henrietta"? And by what morality do they refer to her 'legacy', when it was in actuality the product of exploitation--well-intentioned and designed for human good as it has been--of this lower-SES victim of disease, and of inadvertent but perhaps effectively racist exploitation as well?
The issue of how valuable the HeLa cell line is or has been, and whether or how it should continue to be used (it can't really be stopped as countless labs worldwide use the cells), is legitimate but separate from the simple decency of respect rather than arrogant and paternalistic presumption of goodwill and family familiarity.
"Ms Lacks and the use of cell lines in science" or something of that sort would have more honorably, sensitively, and properly indicated the story within the covers. She was not the editors' neighbor Henrietta, from whom they'd run next door to borrow a cup of sugar.
The cover indicates that this is an ethics story, and the ethical issues (mainly from the point of view of scientists, though well-intentioned) of rights and permissions in research are appropriate, but what are the ethics of referring to her informally and to what they exploited from her as her legacy?
Does Nature use diminutive familiarity in headings like "Francis's exploits!" to refer to the latest exploitation by which Francis Collins fleeces you of your tax money to, say, map your brain? Or "Eric does it again" to refer to the latest mega-paper by Eric Lander? If they see this post, they might start that, because People-magazine-like familiarity might help them sell more mags. And Science will not be far behind.
I may be too prudish or stodgy, or something, but I had to react to this.
We wrote this -
ReplyDeletehttp://www.homolog.us/blogs/blog/2013/08/07/prehistoric-agreement-on-hela-cells/
There are differing opinions on this. I might be pleased indeed if my cells would have such beneficial effects. But my permission should have been obtained first, and (this is my own view) absolutely no personal profit should be made in the process and all work resulting from use of my cells should be made freely available.
DeleteOne can ask whether there was anything about HeLa cells that could not have been learned from anyone's cells, without the other elements involved. At the time, there were few if any such cell lines available, and (I was around more or less, working in genetics) the cells really did at that time allow many things to be done to investigate unknown and relevant issues. Nothing in our comment diminished Ms Lacks in any way.
But I think Nature treated Lacks in a patronizing way, rather than with much greater and more formal request, if her cells really have been that valuable. You might not agree, of course.
"But my permission should have been obtained first"
ReplyDeleteNo disagreement about that, but given that she is not alive any more, the best our society can do is to acknowledge that they made a mistake. Anything beyond that is an overkill.
"absolutely no personal profit should be made in the process and all work resulting from use of my cells should be made freely available"
That is an impossible burden. Do we stop paying post-docs and professors for using the cell? (salary is a form of personal gain) How could we make papers freely available, given that publishing over the net is a new phenomenon, whereas print journals had overheads to print? If a company hires a person and runs a business to prepare better quality HeLa cell line for researchers and earns a profit, what is wrong there?
"But I think Nature treated Lacks in a patronizing way"
No disagreement there. They do whatever sells their tabloids posing as academic journals.
Well, benefitting in our careers is certainly a form of profit. The same issue has been raised often against anthropologists making their careers on the backs, figuratively, of tribal samples they collect.
DeleteBut, that's not what I was referring to, at least vaguely. I was thinking of patenting and commercial profiting, or not making results public, and so on. The kind of company situation you refer to shows that there are complexities with these issues, especially in our commercially oriented societies. In that case I guess I would just say I think that there should be prior agreement about the use of that type and some share of profits to the donor.
NIH dealt with this situation a decade or more ago, and basically, I think, severed the donor from any rights or interests, though I think there may be some conditions about prior consent...though I'm not sure.
I'm not a big fan of our system, but that is just my own beliefs, or whatever.
"I'm not a big fan of our system"
ReplyDeleteNeither am I.
I have been going through your blog over the last one hour and found many things I agree with. In fact, I am yet to find any disagreement, and it is strange that nobody told me about this place in all these years !!
Thanks. Let others know about it, if you think we have discussions on thought-provoking topics. We have our own views, of course, but our objective is to stimulate thought about important things.
DeleteThank you for this post. Nature (both the journal variety and the human variety) is indeed patronizing, racist, sexist, classist. Referring to Henrietta Lacks as Henrietta claims a familiar relationship that she could not then, and cannot now, either consent to or benefit from. The casualness is not only disrespectful, but because Henrietta Lacks was a black woman, and poor, goes beyond the image of the neighbor with a cup of sugar to an image of the housekeeper, and beyond. The use of the first name only outside of personal relationship is a synonym for power-over and ownership, which I suppose is pretty accurate in this case. Our various human societies are profoundly racist, sexist, unjust, and ungenerous at their cores, and it is often easy to go about our daily lives feeling like things might not be so bad; after all, we've got ourselves a black president, don't we? Language matters, and single words carry plenty of the status quo on their small backs. This word matters.
ReplyDeleteThanks for these thoughtful comments. How society can reach a higher level of equity is probably one of the oldest of questions. Indeed--or sadly?--the earliest writers like Plato and Aristotle were not egalitarians. And, of course, many today tacitly support inequity. Unfortunately, I guess, that includes professors like me who make more than the average wage, live in better than average neighborhoods, and all the rest.
DeleteMany anthropologists complain about societal inequity in larger, more complex polities, but nobody to my knowledge has figured out solutions.