Thursday, December 8, 2011

Henrietta Lacks, HeLa Cells and Experimentation - The Reluctant Psychoanalyst Reads Nonfiction

Henrietta Lacks was an African American woman born in 1920 in Maryland.  She died in 1951 and likely would not be someone about whom we would ever know anything except that the cervical cancer cells that would eventually kill her were taken from her when she was a patient at Johns Hopkins University Medical Center.  They were cultured and they not only lived outside her body, but they multiplied rapidly, proving hugely useful to the study of cells and pathology all over the world.  Rebecca Skloot recreated Henrietta’s life in her recent book The Immortal Life of Henrietta Lacks.

The book is the result of a collaborative relationship with Researchers, but mostly it is the result of a collaborative relationship with Henrietta’s four surviving children, her husband, and other members of her family.  In significant part, it is the story of the relationship Rebecca Skloot developed with Deborah Lacks, and, perhaps more impressively, with Deborah’s brother Zakariyya in order to tell this story.  Deborah and Zakariyya are children of a woman who died very early in their life.  They were raised in part by their father, who was very poor, but also by, in Zakariyya’s case, a wicked aunt who locked him in the basement when he was “bad” and beat him with an electrical cord.  Neither of them is well educated, and both are very angry that their mother was taken from them – at times they believe that Hopkins killed their mother - and both harbor beliefs that Skloot is working for Johns Hopkins and is trying to exploit them further – a belief that is supported by the actions of the staff at Hopkins who have, for instance, taken blood from the family in order to study their genes without explaining that this is what they are doing. 

Skloot begins the book by stating in the preface that she wants to keep the language usage of the family – and others in the book – when they are speaking.  This helps her descriptions come to life, but so does the patience that she shows in getting to know the family, working with them to help them understand what her mother’s cells are from a scientific perspective, and in terms of what they have done for science, and to understand what the now adult children’s perspective on their mother’s cells are and how they believe them to be imbued with characteristics that are related to the person that their mother was.  This allows for what feels to me like a very sensitive articulation of the people that Deborah and Zakariyya are, bearing in mind the limits that a white person, no matter how compassionate, will run into in exploring the mind of an African American in the South (see my blog on The Help) – with the further complication of being a representative of the dominant culture that has medically exploited the family. 

Despite – or maybe because of Skloot’s sensitive portrayal, I found myself thankful that Deborah died before the publication of the book.  She would have been, from the description in the book, a person that would be very hard to feel compassion for.  In my mind’s eye, Deborah appears on a talk show or in a news clip.  She is hard, angry, and speaking with very poor grammar.  Even having read the book, I have a hard time embracing her – accepting her – doing much of anything but cringing as she talks.  Who she presents on the outside prevents me from appreciating who she is and, I think, feeling that she deserves, for instance, any compensation for what was taken from her mother. 

Knowing someone from the inside out – and being able to describe them from that perspective – while also knowing them as they come across and being able to appreciate that and the power that their presentation has – is a very psychoanalytic means of engagement.  Which raises the question, who is this for?  In this family, whose mother’s cells were taken without her permission, cells that started a whole industry that has earned many people very good lives and brought considerable wealth to some; this family who has endured interviews and articles that have portrayed them in a variety of ways; this family who is now being interviewed by a journalist who, it turns out, will profit from a very successful book and support the publishing industry, what is the proper and just compensation they should receive?

The answers of the family members themselves vary.  Deborah wants recognition for her mother.  She wants the scientific community to know the person who produced these famous and useful cells.  I think the book accomplishes this.  All of the family members are aware of the irony that the cells have made tremendous health interventions possible – from polio vaccines to treatments for cancer – treatments that they cannot afford.  The book does not change this situation.  Zakariyya, and many of the men in the family, want money.  But Zakariyya is visibly softened, and clearly and very movingly appreciates, the pictures of his mother’s cells that a scientist gives to the family.  Seeing the cells through a microscope and learning about them are, at least through Skloot’s and our eyes, moments of epiphany for Deborah and Zakariyya.  Skloot, herself, sets up a scholarship fund for the children in the family from part of the royalties from the book.  This is money, but with strings attached.

What compensation should our patients receive for the treatment that we provide?  This may sound like a funny way of putting it, but we are “practicing”.  We are learning from our patients as they are learning from themselves and from us.  We are looking into their psyches just as other scientists look into the cells of the patients that they treat.  We, like those scientists, and like the author, need to be compensated to be able to provide the service that we do.  The service that we provide is to help articulate the narrative that has brought the people that each of us serve to the point where they are when we engage with them.  The position of the courts has been that what we take from that and apply to our next patient or, in the case of the book, how we use what we have come to learn about the family and the experiences that they have had, are ours to use as we will to forward the good of human beings and to profit from.  Our patients take, when the treatment is successful, greater insight, a more cogent narrative, and skills to navigate life’s insults a little more gracefully.  They may also be relieved of some measure of pain and inner turmoil.  But, they are not free of the events that led them to seek treatment.  They do not get the concrete compensation that something like money would represent.

Dr. Karl Menninger used to ask whether it was ethical to charge for empathy.  Some have responded that empathy is not paid for, our time is.  Skloot, I think, deserves compensation for her time and expertise.  But that comes from the perspective of a fellow professional.  Our system of compensation has always placed minimal value on the raw materials of wealth and poorly compensated those who unearth or concretely produce them.  Instead, we have placed value on those who organize, understand, and develop the raw materials.  I have certainly pursued the ability to do that, not as a means towards wealth, but I am certainly glad that our system of rewards fits with my predilection towards production.  I am also thankful that I have had the means to achieve the opportunity to make those kinds of productions.  Skloot offers the family support in making the transition to becoming that kind of member of society.  I will be curious to see what comes of that.

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