Welcome!

Hello! My name is Dr. Chris McGee and I am the director of Longwood Seminar here at Longwood University.  As a representative of the First Year Reading Committee that chose The Immortal Life of Henrietta Lacks as this year’s freshman reading, I’d like to welcome you to the First Year Reading blog.  This is a space where people all across the Longwood Community, whether it is current students, incoming students, faculty, or staff, will have an opportunity to share their perspectives on reading this provocative book.  The blog is also open to anyone outside of Longwood, including members of the Farmville community, or even students, faculty, and staff from other universities and colleges.

The First Year Reading Experience is designed to provide all incoming students with a shared reading experience — the aim is to create a tighter community of  scholars and citizens that are thinking about and discussing complex topics.  You don’t have to like the book, you don’t have to agree with everything in it, but you should be ready to talk about it.  In fact talking about big ideas critically and carefully and never settling for the easiest answer, these are the vital traits of a college student.

So take a moment and jump in with a post or a comment.  Be thoughtful.  Be engaged.  Stand by your ideas but be ready and open to learning from other people.  That’s what this blog is all about!  Once again, welcome!

 

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Historical Perspective

“’Like I’m always telling my brothers, if you gonna go into history, you can’t do it with a hate attitude.  You got to remember, times was different.’” (Immortal Life, p. 276)  Henrietta’s daughter Deborah Lacks, said this with tears in her eyes, as she and writer Rebecca Skloot left the Crownsville Hospital Center.  In the 1940s and 1950s, Crownsville was known as the Hospital for the Negro Insane, where Deborah’s sister Elsie had been institutionalized.

As a historian who specializes in twentieth-century southern and African American history, I was struck by Deborah’s comment.  She reminds us that even though the events in Immortal Life happened in the recent past – just a little over 60 years ago – even that past was in many ways fundamentally different from our present.  The modern civil rights movement of the 1960s toppled legalized segregation and expanded the definitions of freedom and equality for all Americans.  As a result, the kind of discrimination that Henrietta and Elsie endured because of their race, socio-economic class, gender, and mental capabilities is no longer acceptable today, and at times it’s hard to believe they happened at all.

But they did happen, and Deborah and her brothers lived with the various ways the past can intrude on the present.  As the southern author William Faulkner said in his 1950 novel Requiem for a Nun, “The past is never dead.  It’s not even past.”  As children, Deborah and her brothers never truly understood why or how their mother died.  Denied a stable home life, they also didn’t have access to quality education, jobs, or health care; this led to some family members engaging in violence and crime.   No wonder they didn’t want to talk about the past or couldn’t help but feel hateful about what happened.  We must admire Deborah for her insight about letting go of the hate, but uncovering the past was still a deeply unsettling and physically destructive experience for her.

Students protest school closings in downtown Farmville, 1963

In reading The Immortal Life of Henrietta Lacks, I can’t help but think of how the past continues to influence the present here in Farmville and Prince Edward County.  Prince Edward County was the site of one of the five cases that comprised the Supreme Court’s 1954 Brown v. Board of Education decision, which declared segregation in public education unconstitutional.  In response to a 1959 federal court order to desegregate, the Prince Edward County government chose not to fund the public schools, effectively closing them.  It took another five years, until 1964, for the Supreme Court to order their reopening.  In that time, over 2000 children were denied access to public schools.  Many parents found ways to provide their children with education during the court challenge, but many did not.  Ironically, Prince Edward County Schools were desegregated earlier than many other school districts in Virginia, but it was the only place in the nation to close its schools for as long as it did.  We continue to struggle with the legacy of the school closings – as the high illiteracy and poverty rates in our county reveal.  Many don’t want to talk about this past, and many continue to struggle with the emotional burden of being denied an education and never really understanding why it happened.

Recognizing the fundamental difference between the past and our present, while also being sensitive to the ways in which the past still resonates in people’s everyday lives – these are habits of thought that are not only essential to being a good historian, but even more importantly, to being an educated citizen.  These are habits of thought we try to encourage here among our students at Longwood.

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Health Care Perspective

Courtesy Visiting Nurses Association of Greater Philadelphia

The Immortal Life of Henrietta Lacks by Rebecca Skloot:
Wow, what an awesome book at many levels! There were points in the story that I felt true interest, joy, sadness, anger, and understanding, not unlike what I expect Deborah and the Lacks family felt as they moved through the journey of dealing with their mother, wife, and/or relative Henrietta ‘s life, illness, death, and then eternal legacy. This story unfolds and is dichotomous. A young African American Woman dies of cervical cancer (caused by Human Papilloma Virus 18 “HPV-18” that is in current day preventable), and then her very own cells taken from her cancerous tumor contributes to science and research to save others and prevent /treat disease worldwide. Yet, while Henrietta’s “HeLa” cells continued to help science, her very own family suffered the fallout of her death including sexual, emotional, and physical abuse growing up without their mother, and a life full of poverty, discrimination, and social injustice.
As for the medical system during the timeframe of Henrietta and her family’s journey, it appeared broken and segregated at many levels in which informed consent and self-determination was not mandated or even considered. Elsie’s experience at Crownsville Hospital for the Negro Insane was eye-opening. Consider the fact that the Lacks family finds out for the first time that Henrietta’s cells are still alive and being used for science in 1973, when her name was revealed and linked to “HeLa cells” in print at least two years prior, and then portions of her medical records were published in 1985. This violates current Health Insurance Portability and Accountability Act (HIPAA) regulations that all health care related agencies are now mandated to follow.
In my opinion, Henrietta Lacks was an amazingly woman. Consider her journey throughout her short life, and experiences from the time she learned of her cervical cancer and the last eight months between her diagnosis and death. She was devoted to her children and family. She was used to hard work. She continued her normal routine for as long as possible. At the same time, people close to her indicated that they thought she knew what was facing her.
Questions:
What is your impression of Henrietta and why?
Examine the social justice and equity issues that Henrietta and the Lacks family experienced when seeking and obtaining health care. Do you feel that the family should have received automatic health and financial benefits from the “HeLa” cell contribution to society? Explain your answer.
In current day, what information would physicians at Johns Hopkins have to provide to Henrietta related to use of a tissue sample of her cervix for use in research? Discuss whether or not you feel Henrietta would have provided consent for this purpose and why.
Distinguish how the current health care system would have differed in the care that Henrietta and her family received.

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HeLa cells-the key to modern biology

The Immortal Life of Henrietta Lacks by Rebecca Skloot:

This is such a remarkable book! From a scientific point of view, few discoveries have made a more revolutionary and valuable contribution to the overall advancement in medical research than HeLa cells. HeLa cells were important
in the research of polio, measles, TB, encephalitis, cancer, vaccines, genetic
engineering, cloning, in vitro-fertilization, chemotherapy, AIDS, and space
exploration just to name a few. On a personal level, HeLa cells are essential
for my research trying to develop a new treatment for cancer and I use them in
my lab often.  However, to fully appreciate the importance of the medical advancement derived from Henrietta Lacks’ cells, one needs to understand the personal story of the woman behind the cells. At some level we can all relate to the book’s themes of love, despair, vulnerability, and the need to be heard and understood. It is this connection that helps us think beyond the scientific
potential of of HeLa cells and recognize the source of these cells as a human being much like ourselves.  When the medical and personal ramifications of the HeLa cells are woven together, clear moral and ethical dilemmas arise.

The following are some questions I would like you to think about and respond to while reading this book:

If Henrietta Lacks could know how important her cells have been to science, do you think she would approve of the fact that they were taken from her without her knowledge or consent?

Do you sympathize with the scientists and doctors in the HeLa situation or with the Lacks family? Why?

One major concern in this story is that many researchers, institutions, and companies have benefited from the HeLa cells, but the family did not receive anything in return for their “donation.” This is the norm in research (a precedent set in case law by Moore v. Regents of University of California that research subjects do not have property interests in their body parts and are not owed any compensation). Are there other ways a researcher or research institution could give back to a participant or community, other than
direct financial compensation?

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The Story of Us?

When Longwood University announced its freshman reading selection was The Immortal Case of Henrietta Lacks, I had countless people tell me how much they enjoyed the book.  Add those reviews to the many reading groups and other universities that have selected this book for discussion, and the individuals that made this a top-selling book, and you have quite a popular text!  But why?  Why have so many people liked Rebecca Skloot’s The Immortal Life of Henrietta Lacks?

In many ways, it’s a depressing and difficult story.  At the end, Henrietta Lacks is dead and we know she suffered greatly.  Deborah is dead.  The Lacks family is still not earning any of the proceeds from HeLa.  Further, we spend a lot of time learning about the horrible effects of racism.  Henrietta Lacks’s story reminds us that science and medicine are not always neutral.  They are not colorblind.  Doctors and scientists sometimes take unethical actions in the name of progress, and those actions often disproportionately affect racial minorities, such as in the Tuskegee syphilis experiments, when doctors left syphilis untreated in black men so they could study the disease’s effects.  So we learn a lot about the evil that men do, and that’s tough to face.  Finally, the narrative forces us to re-consider many cherished beliefs.  For example, we often think of ourselves as unique persons, with body and mind seamlessly melded into one whole.  But the debate over the right to use and distribute the HeLa cells forces us to ask where the body ends and begins.  When are tissues no longer “us”?  What does it mean to be human, and how do we understand our identity as a person?  With all this pain, why do so many find the story compelling?

I think one reason so many people like this book is that it’s a typical “American” story – opposites overcome their differences, learn to trust one another and work together, and find common ground.  It’s the story of the Fox and the Hound, Beauty and the Beast, Shrek and pre-ogre Fiona, or most action hero films of the last 30 years.  In this case, it’s Rebecca and Deborah.  The story, at its heart, offers a racial narrative we want to see – overcoming racism through individual friendship so a woman can find her voice.  And it REALLY HAPPENED!  It’s true!

Why do we want to read this story and understand race relations in this way?  I think we want to believe in a post-racial future – after all, we elected a black President, right?  But that statement is more complex than we sometimes let on — after all, President Obama is racially mixed.  Similarly, the story of Henrietta, Deborah, and Rebecca is complicated.  These women do create an integrated friendship, but they must first struggle and fight and pay for the right to have their voices heard.   It takes work to make these relationships bear fruit, and many of us want the payoff without that struggle.

And that’s why I got so interested in how Rebecca Skloot told her story.  The narrative structure works because it’s connected to the ideals that draw people to the story.  Rebecca Skloot highlights her path into the subject as she also tells us about the subject itself – she makes clear her position as an observer, which makes her more credible and allows her to remind us that there is no neutrality here.  By taking us on her journey of discovery, she makes us participants in the search for truth.   Thus, we can be more sympathetic with Deborah’s struggles and with the family’s varied positions on how to approach Rebecca and her research into the Lacks family.  Skloot seems to suggest that her relationship with the Lacks family represents the path forward, where racial differences can be recognized but individuals can work to see past preconceived notions and find truth.  Our goal at Longwood is similar, but this book shows us we have some work to do ourselves.

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