Wednesday, April 6, 2011

An Archivist's Review of The Immortal Life of Henrietta Lacks

Jeanne Swadosh

Whenever I read a book for pleasure, I keep my eyes open for references to archives and documentary materials, no matter how incidental to the plot. One of my motivations for doing this is to later use these examples to demonstrate to lay persons how much of the archivist’s work is hidden and not readily apparent in the daily grind of human activity.

I also want to analyze how our profession is perceived by others -- by those engaged in the creation and interpretation of texts, accumulating perceptions, and assimilating information into a portrait of the archivist or records manager and his or her function in society. It began as an exercise I conducted for outreach purposes, but I have increasingly found myself under the scrutiny of my own critical lens.

One nonfiction book published last year struck me because records are so integral to the stories told therein. While people who manage and provide access to historical records are often thanked on the acknowledgements pages of books involving a heavy research component, they do not always figure into the narrative arc of the story itself. The book, The Immortal Life of Henrietta Lacks (Crown, 2010) by science journalist Rebecca Skloot tells the story of a poor African American mother whose cancer cells spawned a medical revolution. It is also about Skloot’s arduous path collecting the information to construct that tale. The result leaves readers wondering about the nature of justice, how it applies to the dead, and where records and record keepers fit into this dialogue.

For readers unfamiliar with The Immortal Life of Henrietta Lacks, Henrietta Lacks died of cervical cancer at Johns Hopkins Medical Center in Baltimore, Maryland on October 4, 1951. She left behind a husband and five children, only one of whom was old enough to remember her later in his life. Another child, a daughter, later met a horrific death in an institutional facility. In addition to her immediate family, Henrietta Lacks was survived by relatives in rural Clover, Virginia who would carry her memory forward into the 21st century.
What makes Henrietta Lacks’s story unusual is another thing that remained in her absence: her cells. Medical researchers used Lacks’s cells for experimentation and much of what scientists know today about cancer can be traced to “HeLa” cells.

For the sake of diplomacy, let us say that there was poor communication between Henrietta Lacks’s family and the Johns Hopkins researchers who removed her tissue. When Skloot , who initially became curious about “HeLa” cells in a biology class, began contacting and interviewing the Lacks family for her book, she encountered individuals who were bitter, frightened and anguished by the events set in motion a half century ago. Some -- but by no means all -- of these feelings can be attributed to a lack of understanding about medical terminology. Skloot and Henrietta Lack’s surviving daughter, Deborah Lacks, begin researching what happened to Henrietta Lacks and Deborah’s deceased sister, Elsie, in an often emotionally, psychologically and physically grueling quest for discovery.

There was one question in particular I returned to repeatedly while reading The Immortal Life of Henrietta Lacks: how would I have helped Deborah Lacks if she had walked into my office or called me on the phone?

A profound distrust for institutions such as Johns Hopkins had been ingrained in the Lacks’s collective psyche through decades of badly handled interactions among medical personnel, hospital staff and a sham lawyer, combined with culturally-based assumptions, rooted in historical practice, about the medical establishment’s relationship to African Americans.

This situation was compounded by the fact that Deborah Lacks had no memory of her mother and, in a sense, Henrietta Lacks’s medical records serve as Deborah Lacks’ s only way of discovering anything tangible about a woman who bequeathed no written legacy or photographs to her children apart from a family Bible and a single snapshot. The documents in Henrietta Lacks’s medical file are no longer just a record of a transaction between patient and doctor for Henrietta’s daughter; they collectively become a surrogate for Henrietta Lacks herself. In one conversation with the author, Deborah Lacks says, “I don’t want nobody else to have them [her mother’s medical records]. Everybody in the world got her cells, only thing we got of our mother is just them records and her Bible” (284).

This attitude is made explicit when, having obtained a photograph of her deceased sister, Deborah Lacks asks Skloot to photograph all three of them “almost together” (one living human body, one photograph, and the approximate earth under which her mother’s body was interred) in the family burial ground. This may seem a bizarre request, but having worked in a cemetery exclusively serving economically disadvantaged communities, I can attest that photographs of grave markers are a frequently sought memento, especially when the decedent left no possessions to pass on to surviving family members.

I am no stranger to researchers with a deep emotional investment in research outcomes. In one institutional archive, I assisted patrons seeking documentation of their own or their family members’ childhoods in youth homes. My employing institution established and administered numerous residential facilities for orphans, children with behavioral issues, and young people whose families could not adequately provide for their physical and emotional development.

I recall one woman who had never conducted historical research. She wanted to research her husband’s childhood for him and their children who were now adults with children of their own. It was an intensive few days with many questions posed to me and many carefully composed answers in return. She never did find any record of her husband in the administrative files (thousands of children passed through these facilities and we did not possess individual case files), but the experience of doing research and examining records that may or may not have changed the course of her husband’s life was rewarding for her in and of itself. She left the reading room knowing I had done everything I possibly could for her, short of conjuring 60-year-old records out of thin air.

Did I spend far more time helping her than a typical academic researcher? Absolutely. Was this right? Not for a second would I reconsider the time and energy I expended on that prolonged reference interaction. The differences between this elderly woman and Deborah Lacks were (a) my researcher and her family are grateful for the care her husband received and have no suspicions regarding financial or ethical impropriety regarding his treatment and (b) she felt comfortable interacting with an archivist. She perceived that I was working toward the same goal and not obstructing her exhumation of the past.

Skloot describes a conversation with Deborah Lacks in which the two review Deborah’s research file. In explaining how she learned through reading a genealogy book the proper procedure for obtaining confidential records, Deborah Lacks declares, “They didn’t know who they was foolin’ with!” (281). It is unclear who the adversarial “they” is in Deborah’s assessment. It is possibly the records department of the Crownsville Hospital Center [] where Henrietta Lacks’s eldest daughter and Deborah’s big sister, Elsie, died (in Deborah Lacks’s opinion, “murdered”).

In one of the most riveting (for the archivist or records manager reader at least) chapters, Skloot and Deborah Lacks visit the Crownsville Hospital Center seeking patient records. There in the former Hospital for the Negro Insane of Maryland they encounter two of the heroes of The Immortal Life of Henrietta Lacks, a hospital director who majored in history and was a former social worker, and an anonymous official who has diligently guarded Elsie Lacks’s privacy.
Paul Lurz, the director, has rescued selected patient records from a landfill. He compassionately prepares Deborah Lacks for what she may discover in the records closet where he has stashed away the only surviving documentary materials on seven decades of “treatment” for African American patients: “Sometimes learning can be just as painful as not knowing” (271). Indeed, what Deborah Lacks, Lurz, and Skloot learn together in the next few minutes is more terrible than any of them could have imagined.

Reading The Immortal Life of Henrietta Lacks reinforced for me how “equal” access is not what publicly-minded archives should be aiming for. Publicly-minded archivists should also concentrate on “equitable” access. I have seen this distinction made more frequently in public librarianship, where a diverse patron population forces librarians to realize that not all researchers who walk through their doors do so on equal ground.

Deborah Lacks had Skloot to help her decipher medical terminology and open administrative channels of communication. Most researchers do not approach the reference desk with a journalist in tow. Nor do most institutional records departments or archives employ professionals with the same convergence of skills and aptitude as Paul Lurz. To recognize inequalities in researchers’ educational attainment and to respond accordingly is a matter of justice. Recognizing historical injustices and how they affect contemporary information seeking behavior is equally vital.

Another matter of justice is the uniform protection afforded to records documenting vulnerable populations. Because I always read the endnotes, I learned that medical researchers have as recently as 2009 violated HIPAA laws regarding Henrietta Lacks’s patient records. Skloot provides an excellent, succinct overview of death and privacy rights as they pertain to the Lacks family. Privacy is never just about one individual, a case Skloot adroitly covers.

This discussion about justice needs to happen more openly and frequently in the archival community. Individuals who become either wards of the state or charitable institutions are regularly perceived as common property, be it their records or their grave markers or their likenesses. A dialogue that takes into account different cultural attitudes toward and definitions of privacy should be welcomed. Otherwise, archivists will continue to be the “they” -- oftentimes rightfully characterized -- of Deborah Lacks’s assessment.