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.

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.