Author tells about her journey in science, ethics, relationships, trust

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by Cynthia Price
Legal News

According to Miller Johnson’s Kenneth Hofman, there was nothing calculated about why he and the law firm chose to sponsor author Rebecca Skloot, who wrote The Immortal Life of Henrietta Lacks, in Calvin College’s January Series: it was because they love the book.

“This is a fascinating book by a gifted author dealing with an issue that has so many ramifications for health care in this society,” says Hofman, whose practice includes health law.

He notes that there are also ethical questions that touch on diversity, which is near and dear to Miller Johnson. But, he says, the sponsorship committee was not necessarily looking for something that would be legal in nature nor were they seeking to make a big mark in the publicity area, though as it happened the Skloot lecture was one of the better-attended so far this year.

Sponsors of the January Series lectures agree to provide underwriting and only later designate which events they would like to have associated with the company name. Kristi Potter, director of the series, Calvin staff, and advisors choose the speakers well in advance. There is no guarantee that a sponsoring company will get its first choice, but Hofman is very glad that this year Miller Johnson did.

“We have a lot of Calvin graduates here at the firm, and we’ve been a sponsor for many years,” says Hofman, who graduated from Calvin himself. “It’s just been phenomenal.”

He comments about what he found so inspiring about the book, “Something very wrong occurred, but then I love the dimension that what came out of it was a huge benefit to all of society.”

The Immortal Life of Henrietta Lacks struck the same kind of chord with millions of readers. After its release in 2010, the book almost immediately landed on the New York Times Bestseller List where it stayed
for more than two years, including time at the #1 spot.

It tells the complex story of Henrietta Lacks, who in 1951 was unwittingly the donor of the first cells whose “immortal” characteristics allowed them to grow without limits and made them ideal for research, and of the Lacks family and their growing realizations about their mother’s story. Lacks was a poor African-American woman, treated for cancer in a charity ward at Johns Hopkins, who did not give consent for her cells to be harvested, nor was she told about what happened with the cells before her death later that year.

As Skloot spent ten years researching her book, she became a part of the family’s story, as well as a character in her own book. In particular, she forged an enduring friendship with Henrietta’s daughter Deborah.

Skloot told the near-capacity crowd at Calvin that she feels acutely the responsibility and the privilege of being the one who has told the Henrietta Lacks story.

The origins of her fascination with Lacks came when she was only 16. Fixated at the time on becoming a veterinarian, and none too stellar a student in classes she felt were wasting her time — “I first started getting in trouble in preschool for refusing to take a nap,” she says — Skloot had a biology teacher at her alternative high school mention HeLa Cells and very simply scroll “Henrietta Lacks” on the board.

“It grabbed me for some reason,” Skloot says, “so I went up after class and asked the teacher, who was she and what do we know about her? And the response was, ‘Sorry, nobody knows anything about her.’”
In college, she took a writing class and ignited a heated debate through a brief piece she wrote about the ethical questions working in an animal morgue raised for her. When the debate resulted in class
members writing a letter to the provost, she says she thought, “Wow, writing is cool.”

She was still resistant to giving up her “veterinary tunnel vision.”  She laughs as she explains that when she was applying to veterinary school her writing teacher set a stack of writing program catalogs in front of her and said,  “There’s this thing called science writing. I think that’s actually what you want to do, but you just haven’t acknowledged that yet.”

Her father, Floyd Skloot, is a distinguished writer best-known for his essays, and even her mother Betsy McCarthy, a knitting pattern creator, has a blog, so they were both supportive of her changing direction.
At the University of Pittsburgh, her assignment was to write a book-length thesis on forgotten women in science, and her journey began in earnest. Remembering her fascination with Henrietta Lacks, she realized that she would have to get in touch with the young mother’s family in order to do the story justice.

But since scientists in the 1970s and onward had had the same thought — but motivated by the desire to explore the cells of the Lacks descendants — Skloot found the family decidedly unreceptive at first.

Part of the book’s fascination lies in the tale of Skloot’s back-and-forth relationship with Henrietta’s children, who experienced moral outrage at the sense that their mother had been exploited, as well as in some a feeling that the family should benefit financially from the later commercialization of the very-widely-used cells.

In particular, Deborah’s emotions led her to alternately open up to Skloot and then shut her out. Skloot says Deborah once told her, “No matter what I do to you, don’t let me stop you from writing this book.”

The publication’s popularity has as a whole been positive for the family, and Skloot said that when she provided advance copies to the family and the younger generation read it to the mostly-illiterate older generation, “The younger generation thought that Henrietta was a rock star.” When family members attend her readings and lectures, they are often thanked by cancer survivors who say their mother’s cells saved their lives. “The number of responses like that they’ve heard has been astonishing,” Skloot says. “It’s been pretty healing for them.”

Skloot has also started a foundation with proceeds from the book, which gives grants to Lacks family members interested in furthering their educations, or for health care. The foundation has as of Jan. 9 awarded 36 grants.

A strong component of the book is its careful science writing, for which Skloot has won awards; she coedited The Best American Science Writing 2011 with her father and Jesse Cohen. She speaks to scientific groups, but she says one question they have yet to answer is why Henrietta’s cells had the properties that allowed them to proliferate in such an extraordinary way. Moreover, for decades no one even asked the question. “I actually give a lot of talks where people say, why don’t we know this? In fact, as a result, there are actually scientists now trying to answer that question.”

That dovetails with Skloot’s strongest advice to the Calvin College audience: pay attention to the “what moments.”

She explains, “When you hear something that just doesn’t make sense, and your response is, ‘Wait, what? Why?’ follow your curiosity and find out. This book is just full of ‘what moments.’”