Tuesday, June 15, 2010

Must-read: The Immortal Life of Henrietta Lacks

Rebecca Skloot has written a moving, enlightening, provocative, detailed and above all TRUTHFUL story in The Immortal Life of Henrietta Lacks. When it was published earlier this year I read glowing reviews but waited until recently to read it. Now I can't get it out of my head. It raises questions for me about informed patient consent and research participation; about intercultural communication and about public health. For starters.
In the half-century since Henrietta Lacks' death from cancer, cells removed from her primary tumor have grown vigorously and survived to be used for research into cancer, AIDS, polio, the effects of radiation and toxic substances, gene mapping, and countless other scientific pursuits. “In the biomedical world, HeLa cells are as famous as lab rats and petri dishes,” wrote reporter Van Smith.
Skloot pursued first person accounts from the scientific community as well as the extended Lacks family. She worked on this project for 10 years; the result is compelling.

Public Health
There are many oppositional relationships in the story Skloot tells. The family and author point overtly to a contradiction between the Lacks family's poor health -- which poverty does nothing to remedy -- and the tremendous value to medical research of the cell culture known as HeLa. (Named according to convention from Lacks’ name). The family suffers from a variety of treatable and or preventable illnesses: the sad consequences of uncontrolled hypertension are clearly depicted here.Clearly research is facing barriers on its trip from bench to bedside.

Cultural Competence
Divergent concepts of immortality are in stark contrast. Many Lacks family members are emphatic believers in the immortal soul. Some find it confusing and troubling that scientists continue to apply technologies such as cloning to the cells. Learning about their beliefs - hearing them explained and witnessing the context - is incorporated forevermore into my understanding and practice of acquiring informed patient consent.

Speaking for Myself
Yes, Skloot inserts herself into the narrative. Yes, she represents an "everywoman" for the reader to cling to during times of great scientific tumult or family turmoil. Although it's not usually the case, in this story I appreciated that device. It’s helpful when
the reader is called upon to learn both basic science and unpleasant details of the lives of tobacco field workers in the same chapter.

Who has control over a woman's body?
Medical ethicists know this but I needed to be reminded that there is no such thing as a single cultural more. Skloot’s context for scientific experimentation is completely different from that of the family. The Lacks' predictable suspicion is grounded not just in the legacy of slavery but in their own experience. Skloot sensitively documents the story of an institutionalized family member without being heavy-handed.
In this post Myriad-ruling period, the concepts of owning and patenting SNPs and genes is evolving. Although HeLa is an entire cell, reading this story showed me both how far we’ve come and how much more we need to discuss. I found more than 16,000 blog posts citing this amazing tale – 10 in the last day! -- but still could not resist capturing and posting writing my own response.

Not forgotten
Skloot has formed a foundation in her memory and a few weeks ago Henrietta Lacks received a long-awaited tribute from her family. A headstone was placed in the field where she was buried. It reads
Henrietta Lacks, August 01, 1920-October 04, 1951.
In loving memory of a phenomenal woman, wife and mother who touched the lives of many. Here lies Henrietta Lacks (HeLa).
Her immortal cells will continue to help mankind forever. Eternal Love and Admiration, From Your Family.

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