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.

'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

Who was Henrietta Lacks? Why is there a book about her?

The First Year Book is a tradition at Maryland. It’s given to you for free (which is great since you’ve probably just started buying your own books), and it’s given to you so you may engage in a conversation with the University community.

Keep in mind that your views are not right wrong; they are your views. I only ask that you engage in respectful conversation with others. Many of the topics we have explored over the past 18 years have been controversial: the death penalty, global warming, issues of race, class and identity, to name just a few. Often these topics challenge us to examine what we really believe.

The project began back in 1993 from when a student decided that she wanted a new tradition, one that involved something academic. Since there is not one course that all students take, she decided she wanted a first year book, much like ones at smaller schools.

Since that time we’ve introduced 19 books to first year students at Maryland. We’ve had fiction, biography, plays and poems, the intent of each one to generate dialogue among students and faculty members.

The author, Rebecca Skloot tells the story of Ms. Lacks’ illness and subsequent death from cancer and the cells taken from her which grew and grew and grew, and as a result, were used in some of the most pressing medical research of the 20^th century, such as polio and AIDS.

What makes this story so compelling is that is this: her family, living in poverty and ill health were followed by Johns Hopkins researchers for many years. Her husband and children were led to believe that physicians were monitoring the family’s cancer risk.

The story is a local one, chronicling the family’s move from the south to better employment opportunities for African Americans during WWII. Ms. Lacks had to travel 20 miles to be treated at JHU because it was the closest hospital that would see African Americans.

And years later, when the family found out about Henrietta’s legacy, there arose suspicion in the Black community, recalling images of the Tuskegee and the Mississippi Appendectomy studies.

So I invite you to join me in discussing The Immortal Life of Henrietta Lacks.