Henrietta Lacks and the power of rhetoric

Paradoxically, the victim can have the most powerful position, namely, as a “rhetorical figure.”

I sense this rhetorical power in Rebecca Skloot’s bestselling book, The Immortal Life of Henrietta Lacks. I think less freely under the spell of this rhetoric. My thoughts are not allowed to discover new aspects of things. Questions are being silenced and the direction of my “reasoning” is predestined.

Who dares to be scrutinizing in the confrontation with the tear-jerking language that occurs on the author’s website for the book? This could be the lyrics of a whole genre of sad songs.

We read and write about Henrietta Lacks as if we were spellbound.

The most spellbound of all seem to be the reviewers of the book. Many excel in morbid presentations of a both dead and living body abducted by science; of a poor black woman who anonymously “paid the price” for a whole series of profitable medical discoveries and innovations.

Who wouldn’t yield to the temptation?

As a result, however, obvious questions are silenced. For example: 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?

(I wish to thank Joanna Forsberg for inspiration. A comment of hers on our Swedish Etikbloggen helped break the spell for me and gave birth to this post.)

Pär Segerdahl

The temptation of rhetoric - the ethics blog

4 Responses to Henrietta Lacks and the power of rhetoric

  1. […] 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 […]

  2. What follows is a copy of a comment posted on the BMJ blog post linked above that references this post:

    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, whether the family is owed anything in return for those cells being taken, or whether Henrietta is a victim of science (which is not the story told in the book) miss the ethical heart of the story. When asking the question, “what does it have to do with the family?” as this post asks, 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 public, why I quoted the family verbatim, and much more, see http://www.rebeccaskloot.com/faq

    • 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.”

    • In the FAQs that you refer to (http://rebeccaskloot.com/faq/) you ask why the book is important, and give the following answer:

      “…But one reason the story is important today is that we live in a time when medical research relies more and more on biological samples like Henrietta’s cells. A lot of the ethical questions raised by Henrietta’s story still haven’t been addressed today: Should people have a right to control what’s done with their tissues once they’re removed from their bodies? And who, if anyone, should profit from those tissues? Henrietta’s story is unusual in that her identity was eventually attached to her cells, so we know who she was. But there are human beings behind each of the billions of samples currently stored in tissue banks and research labs around the world. The majority of Americans have tissues on file being used in research somewhere, and most don’t realize it…”

      And in the afterword of the book you focus on two problems, stating “There are, essentially, two issues to deal with: consent and money.”

      So it seems to me that these questions should be considered at least a part of the ethical heart of the story. And since they are both contested issues in research ethics, it is important to discuss them. However, a difficulty with using the example of Henrietta Lacks is that “confounding” issues are introduced that are not (primarily) research ethical, but grounded in social injustice, e.g. regarding access to healthcare and education. As a result, it does not feel good to question that Henrietta should have been asked for consent or that her family should receive economic compensation. After all, “she was a poor black tobacco farmer” whose “family cannot afford health insurance”…

      Unfortunately, obtaining informed consent and paying individuals for samples both impose costs that in the end all of us, as current and future patients, must bear. Consent requirements can introduce selection bias and thereby invalidate results. Allowing people to profit from their samples consumes resources that could be used for more or better research instead, as does offering individuals continuous information and choices regarding what their samples can be used for.

      Therefore it is important to distinguish between different ethical aspects of the story. The fact that there are people who do not have access to healthcare is unacceptable, but does not necessarily have anything to do with whether or not individuals should receive money when their samples are used in research, or with the need to obtain informed consent. A Swedish book reviewer recently claimed that the both dead and living body of Henrietta Lacks was abducted by science.

      I think we should be careful that the story of Henrietta Lacks is not abducted.

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