HeLa in The New York Times, August 2013

Two years later, the 2011 First Year Book continues to make a difference as the Lacks family is finally given the power to decide the fate of Henrietta Lacks' genome.  In the article by The New York Times covering the deal made between the Lacks family and medical scientists, Dr. Eric Lander of the Broad Institute (Harvard, MIT) states the importance of creating a foundation of trust and respect with individuals and their families:

“If we are going to solve cancer, it’s going to take a movement of tens of thousands, or hundreds of thousands, of patients willing to contribute information from their cancer genomes towards a common good,” Dr. Lander said. “We are going to need to have ways to have patients feel comfortable doing that. We can’t do it without a foundation of respect and trust.”

Read the article itself on The Times website:

A Family Consents to a Medical Gift, 62 Years Later

by CARL ZIMMER
August 7, 2013

"Jeri Lacks Whye, center, one of Henrietta Lacks’s grandchildren, with her own daughters, Jabrea, left, and Aiyana Rogers." (Photo credit nytimes.com, Monica Lopossay)

Seeking Questions for Sonny Lacks Lecture

I’m really excited to meet Sonny Lacks when he visits campus on October 26. I’m curious about what he thinks of the whole focus on his mother. He must have been only four years old when she died.

If you’ve read the book you know that Henrietta’s daughter, Deborah, has a significant part in the story. She was only two years old and to some extent, when the story was told to her, she became its keeper.

Deborah is the one who wanted to know more about her mother, and longed to understand what immortality meant.

When Rebecca Skloot first contacted Dr. Roland Pattillo, a professor at Morehouse and one of George Gey’s only African American students, Dr. Pattillo warned her that she would have to get past Deborah.

But Deborah died before the book went to print. Sonny is now the keeper of the story.

Last year Morgan State University posthumously awarded Henrietta Lacks an honorary degree. Sonny accepted it on behalf of the family. It is my understanding that he wants to help get the word out about his mother’s contribution. He’s waiting for me to send him questions that students want answered.

So, what do you want to know?

I want to know what he remembers about his mother.

I want to know how it felt to have Hopkins follow his family for so many years without knowing why. What was his father’s reaction?

I want to know how it feels to have a mother whose contribution was not known for many, many years, only to have a bestselling book about it written and receive so much praise.

I want to know how it feels to have a white woman tell a story about Henrietta.

I want to know what it’s like to have the details of his family’s life on the pages of a book.

I want to know if he thinks health care for African Americans is better now than it was in 1951.

I want to know what he wants us to know and remember about the legacy of his mother.

But more than anything else, I want to know, reader, what questions you have for Sonny.

---Dr. Lisa Kiely, Assistant Dean for Undergraduate Studies.

Film Shows Effects of Tuskegee Syphilis Experiment

“It was for the greater good.”’

That is the last line from the film, “Miss Evers’ Boys,” an HBO movie about the 40-year Tuskegee syphilis experiment. The movie is fiction but is a heartbreaking account of hundreds of men suffered needlessly from 1932 until 1972.

The movie begins in 1973 at a Senate hearing on the abuses of the experiment. Miss Evers, an elderly former public health nurse, is being questioned about her role in the Tuskegee syphilis experiment. There are flashbacks to pivotal episodes over the past forty years of the experiment.

First, there is hope that a white doctor has an interest in the syphilis epidemic in a predominantly black area. But then funding for the research is cut from a foundation in Chicago.

Later, her immediate boss, an African American doctor is brought to Washington to discuss a new, smaller study of the infected men. Angry after realizing that the men would not be receiving treatment, he is told that treatment will come later. This is for the greater good.

But the treatment never came. Not after penicillin was available, not after they suffered debilitating illness due to the disease, not after many died. The 412 men in the study were told they were being treated.

Miss Evers knew the truth.

Feeling an obligation to the men, Miss Evers stayed with them.

I won’t tell you any more about the movie. But you may want to ask your students to watch it for extra credit. What was the greater good? Why would a talented young nurse with a strong moral code, herself African American, continue to allow the men in the study to believe they were being treated? As I mentioned at the beginning, the movie is fiction. But it gives us an indication as to why this study continued.

It’s almost impossible to understand this in 2011. It was impossible to understand in 1973. And it made no sense in 1932.

What is polio?

One of the first and most important uses at the time for the HeLa cells was in the vaccination against polio. We hear little about this disease now with most cases happening in other parts of the world. In fact, a new strain was just found in China and Pakistan; not here in the US. But it was not always that way.

If you’re under sixty, you probably know very little about polio. Feared by many Americans, polio was once considered the most dreaded childhood disease.

We know that FDR had polio. We’ve seen pictures of him in a wheelchair. But did you know that director Francis Ford Coppola, musicians Neil Young and Joni Mitchell, and actor Alan Alda had polio? Or that’s it’s been around so long that the fourth Roman Emperor Claudius also had polio?

In a nutshell, polio is an acute viral infectious disease spread from person to person, primarily via the fecal-oral route. Ninety-five percent of the time, the disease left no marks. But for some, polio caused paralysis and sometimes death. Folks whose paralysis impeded their ability to breathe had to be put in an iron lung.

While we now know that polio was around thousands of years ago, it was not until the late 1880s when there were major epidemics. Sometimes it affected many members of one community.

Philip Roth’s novel, Nemesis, chronicles a working class Jewish community in Newark during World War II where many young children contracted polio and died.

While his book is fiction, it accurately portrays the fear of polio with parents warning their kids, “don’t do this, don’t do that.” Heath official warned children that summer fun could result in death.

There were concerns about swimming pools, or anywhere groups of children congregated. Parents were told to keep their children bathed and well rested, schools were closed, and when it struck a community, movie theatres were shut down.

In the book, wealthy children were sent to camp thinking it would keep them safe.The less affluent kids had programs led by the recreation director. But neither group is immune from it, and neither are the adults.

"People may have some fear of immunizations today," says Dr. Clyde Culbertson, professor emeritus at the I.U. School of Medicine, who was director of biological research at Eli Lilly and Company between 1949 and 1964. "But this fear is incomparable to the fear of people when polio is striking thousands indiscriminately. During the 1940s and '50s, townspeople were even trying to cordon off their towns to outsiders.

Here are some basic facts:

• Polio is a viral disease which may affect the spinal cord causing muscle weakness and paralysis. The polio virus enters the body through the mouth, usually from hands contaminated with the stool of an infected person. Polio is more common in infants and young children and occurs under conditions of poor hygiene. Paralysis is more common and more severe when infection occurs in older individuals.
• The number of cases of polio decreased dramatically in the United States following the introduction of the polio vaccine in 1955 and the development of a national vaccination program. The last cases of naturally occurring polio in the United States were in 1979. Most of the world's population resides in areas considered free of wild polio virus circulation. Travelers to countries where polio cases still occur should know they are immune or be fully immunized. In 2008, these areas include Africa, Southeast Asia, and the Eastern Mediterranean.
• Polio is spread when the stool of an infected person is introduced into the mouth of another person through contaminated water or food (fecal-oral transmission). Oral-oral transmission by way of an infected person's saliva may account for some cases.
• Up to 95 percent of people infected with polio have no symptoms. However, infected persons without symptoms can still spread the virus and cause others to develop polio. About four to five percent of infected people have minor symptoms such as fever, muscle weakness, headache, nausea and vomiting. One to two percent of infected persons develop severe muscle pain and stiffness in the neck and back. Less than one percent of polio cases result in paralysis.

Some of the fears experienced by people in the 1940s and 1950s may sound familiar. In the early 1980s, the threat of AIDS caused major overreactions. In 2003, SARS was thought to be lurking in anyone with a cough.

But these were overreactions and myths. While not every prevention method kept polio away (and in some cases was the wrong reaction), living with this fear was real and the danger to children was real.

The polio vaccine was and is still considered a major medical breakthrough. HeLa cells allowed Jonas Salk to develop it.

That’s pretty amazing.

'The Immortal Life of Henrietta Lacks' wins best book award from National Academies

The National Academy of Sciences, National Academy of Engineering, and Institute of Medicine awarded the 2011 Communication Award for a book to Rebecca Skloot for "The Immortal Life of Henrietta Lacks."

The awards honor "excellence in reporting and communicating science, engineering, and medicine to the general public," and come with a prize of $20,000.

The winners will be honored on Oct. 14 during a ceremony at the National Academies Keck Center in Washington, D.C.

For more information about the awards, read the press release from the National Academy of Sciences.

The Historical Context of Henrietta Lacks

This is a lesson plan to use with UNIV 100 students while teaching The Immortal Life of Henrietta Lacks as part of the 2011-2012 First Year Book program. This lesson was developed by Dr. Lisa Kiely, assistant dean, University of Maryland, College Park.

Warm-Up:

Ask students to read “A few words about this book,” the Prologue and the section of the FYB website under “Life.” (Read about Henrietta Lacks and read one review of the book).

Quickwrite (After reading, write for 5 minutes reacting to the reading), then discuss.

Mini-Lesson:

Explain the goal/purpose of today’s lesson which is to better understand the historical context of Henrietta Lacks and her story.

Model the “Sum It Up” activity with the warm-up reading. The “Sum It Up” activity is a reading strategy used to improve summarization skills. Here is a modified version to use in UNIV courses.

Group Activity:

Say: When you read the story about Henrietta Lacks, keep in mind that what was done was not illegal. Many of the laws around informed consent were born out of violations made in the past. But in 1951, what was done to Ms. Lacks was not a crime. Now think about the same thing happening in the context of history.

Ask the students to work in groups using the ‘Sum it Up’ strategy and report back to the class on the following issues (http://fyb.umd.edu/HeLa/):

The Tuskegee Syphilis Experiment

The Mississippi Appendectomy Study

The history of Johns Hopkins University Hospital (start by reading about it on page 15)

The migration of African Americans from the south for job opportunities (particularly around WWII- see Turner’s Station and Sparrows Point)

Nazi doctors and the Nuremberg Code

Have groups share out.

Group Discussion:

After listening to the history with which the Lacks family carries (as did many African American families) from medicine and science, history and their daily lives, have them discuss the following questions as a group:

Why is this story important?

What images would come up for the family when they found out about the cells?

If you were in their place, how do you think you would react?

Can you think of other experiences today that are similar?

Quickwrite: Reflect on today’s lesson. What did you learn? Have any of your opinions changed? Why?

What was life like in the 1950s for African Americans? Why did Henrietta’s family come north?

What was life like in 1950s Baltimore for Henrietta and her family? I can’t speak to it personally. I wasn’t alive nor do I know anyone who experienced it. But I do think that in order to understand Henrietta’s story, I have to understand it in relation to time and place. Without it, the story loses any kind of meaning for me.

Many African Americans came left the south in what was called “the Great Migration.” Initially this happened from 1910 to 1930 but the second migration came from 1940-1970. Henrietta and her husband left Clover, Virginia, where they farmed tobacco and where their ancestors had been slaves.

Moving north meant taking advantage of work opportunities more available to African Americans due to WWII. Henrietta’s husband worked for Sparrows Point, the largest steel manufacturing plant in the world at that time.

The work was not pretty: workers (primarily black men) were exposed to toxic coal dust and asbestos. But it was steady and afforded a middle class life to the growing Lacks family. We now know more about the health risks that existed at Sparrows Point and there have been recent efforts to clean up the area.

But while moving up north mean steady work and a better life for their children, life in Baltimore was not without segregation. While the Civil War ended slavery, it did not open up schools or public accommodations for African Americans.

The Second Morrill Act (1890) upheld that states needed to provide the same services to blacks as whites but they could be separate. “Equal” didn’t necessarily ring true. Plessy v. Ferguson upheld this. Take a look at this timeline of major events and legislation of civil rights.

What else happened around this time? What was the Baltimore of Henrietta Lacks?

In 1952, the Army Chief of Staff ordered worldwide integration of this service. Despite efforts to integrate the Armed Forces after WWII, the last segregated unit existed in 1954.

In 1964 the twenty-fourth amendment to the constitution was passed. Since the legal end to slavery, Blacks in America had been denied the right to vote by a number of different ways. Some measures were deceitful, many others were life threatening. This confirmation ensured the Abolition of the Poll Tax Qualification in Federal Elections.

The University of Maryland did not allow Black students until 1951. Prior to that time, the Princess Anne campus served as the “separate” school for African Americans.

Workplace racial discrimination was legal until Civil Rights Act of 1964 prohibited discrimination in employment.

Did you know that Henrietta and her husband had to drive 20 miles to get to Johns Hopkins because JHU was the closest hospital that treated Blacks? Or that JHU began as a “charity” hospital as part of its mission?

Given life in Baltimore (and many other places in the US), what do you think healthcare was like for African Americans?

--- Dr. Lisa Kiely, Assistant Dean, University of Maryland