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Home » Season 2 » Making a Difference: The Story of Rebecca Skloot and The Immortal Life of Henrietta Lacks

Making a Difference: The Story of Rebecca Skloot and The Immortal Life of Henrietta Lacks

By John Warren, Head of School

Convocation Speech:  5 September 2014henrietta-lacks

Stories about people who make a difference—who lead lives of consequence—fascinate and inspire me. I hope the same is true for you. These stories provide examples of special qualities that we can learn from and try to employ ourselves. Role models, people we know who live their lives admirably and people we learn about, provide an important standard for us to aspire to and make us think harder about how we can be our best selves. I encourage you to be constantly on the lookout for such people and to take the time to reflect upon what makes them special and how their lives can relate to yours.

An individual who fascinates and inspires me is Rebecca Skloot, a science journalist who wrote the book The Immortal Life of Henrietta Lacks. As you will see, Skloot’s story seems especially relevant as we start our academic year.

The Immortal Life of Henrietta Lacks became a widely celebrated best-seller in 2010 and gained recognition in the academic world because the book reported some shocking truths and also because the book sparked important ethical debates. Medical researchers, politicians and the general public have all entered into the discussion with a fervor that is impressive.[1] As an aside I should tell you that Ms Berndt, the chair of our Science Department, reports that Mathilde Sauquet, who just graduated in June, was assigned The Immortal Life of Henrietta Lacks as the summer reading book for Trinity College.

Rebecca Skloot’s story demonstrates the importance of following your passion about a subject, the importance of gaining and using knowledge, of employing determination and resilience, and of committing oneself to issues of social justice. These are qualities accessible to each of us and that each of us can use to make a difference in whatever setting best fits our passions.

Rebecca Skloot undertook her work because of her convictions, not in order to become famous. Fame sometimes comes as a by-product of following a passion, but more often it does not.

Skloot’s story starts in 1988 when she was the age of many of you, sixteen, and in a biology class. While she was studying how cancer cells develop and about the research to find a cure for different types of cancers, Skloot’s teacher told the class about cancer cells taken from a woman in 1951, shortly before she died of cervical cancer, that have come to be used in path breaking medical research. Many research laboratories, Skloot learned, possess vials that contain billions of cells that originated with this woman, Henrietta Lacks.[2] Apparently, if you were to lay, end to end, all of the cells that have originated from Henrietta Lacks, they would wrap around the earth at least three times–pretty remarkable when you consider that a cell is microscopic![3]

Henrietta Lacks’s cancer cells are miraculous because they remained alive in a Petri dish, reproducing an entire generation every twenty-four hours. Previous to Henrietta Lacks’s case, keeping cells alive in culture, which doctors and scientists had been trying to do for decades, had been unsuccessful. So, Henrietta Lacks’s cells were the first so-called immortal cells ever grown in a laboratory, hence the title of the book. The cells have contributed to research on treatments for diseases like leukemia, hemophilia, and Parkinson’s and have contributed to research on topics ranging from human longevity to mosquito mating to the negative cellular effects of working in sewers.[4]

Skloot was fascinated by what she heard from her teacher about the cells, and she was also fascinated by her teacher’s report that all that was widely known about the person from whom these billions and billions of cells had originated was her name. Skloot’s fascination with science continued in college, where she majored in biology. Skloot also became fascinated with writing, getting a graduate degree in that subject. Periodically in her studies Skloot came across references to research projects that used HeLa cells, the cells that had originated from Henrietta Lacks. Periodically Skloot would investigate the background of Henrietta Lacks, a search made far easier by the maturation of the Internet in the mid-1990s. Skloot eventually learned that Henrietta Lacks had been a lower middle-class African-American living in Baltimore. It was not until twenty years after her death that family members learned that Lacks’s cells were still alive, and this information was about all they knew.

Coming to understand who Henrietta Lacks was and how her cells became so essential to so much research became a passion for Skloot. As she recounts in the book, “As I worked my way through graduate school studying writing, I became fixated on the idea of someday telling Henrietta’s story. At one point, I even called directory assistance in Baltimore looking for Henrietta’s husband, David Lacks, but he wasn’t listed. I had the idea that I’d write a book that was a biography of both the cells and the woman they came from—someone’s daughter, wife, and mother.”[5]

The decade long quest to learn both of these biographies became the substance of The Immortal Life of Henrietta Lacks. The book, which I commend to you, and which I know some of you have read, contains impressive investigative journalism and personal memoir.

In the book, Skloot describes her ten year effort to learn how Henrietta Lacks’s cells got from a hospital in Baltimore to research laboratories throughout the world. This effort required gaining the trust of Henrietta’s family members. Skloot describes overcoming many apparent dead ends when historical records seemed impossible to find or access, and she describes moments when the patience and fortitude she and family members needed flagged as they tried to piece together Henrietta’s story, the story of her extended family, and the story of her cells. Getting the book published required considerable determination and resilience, too. Three publishers and four editors rejected the manuscript before it found a home.[6]

Rebecca Skloot describes her quest eloquently in a brief video available on her web site. Skloot’s passion for her subject comes across in a way that I cannot possibly convey in my words.:

http://rebeccaskloot.com/

In her book, Skloot raised the indisputable fact that it was wrong for research laboratories to use Henrietta Lacks’s cells without the permission of family members. A major contribution of this book was to highlight, to a broad audience, the necessity for a person to give informed consent if cells or other parts of their body are going to be used for medical research. The fact of callous disregard to this clear human right in the case of Henrietta Lacks, and others, is shocking.

The difference that Skloot made to medical research, to public awareness, and to social justice about the importance of giving consent did not end with the book’s publication or with follow up speeches she and Lacks family members have given.

In 2013 the issue of consent arose again with the Lacks family, and again Skloot made a significant contribution. In that year, scientists at the European Molecular Biology Laboratory published, without permission, the genome of a line of HeLa cells, that is to say the DNA of Henrietta Lacks. Skloot immediately submitted an opinion piece to the New York Times, published on March 23, protesting this action. Skloot’s skill at written communication and the status she had gained because of the book prompted quick and widespread attention and an eventual correction.

Here is the way Skloot, in her New York Times piece boiled down very complex science, the study of the human genome, into prose that is hard to ignore:

Imagine if someone secretly sent samples of your DNA to one of many companies that promise to tell you what your genes say about you. That report would list the good news (you’ll probably live to be 100) and the not-so-good news (you’ll most likely develop Alzheimer’s, bipolar disorder and maybe alcoholism). Now imagine they posted your genetic information online, with your name on it. Some people may not mind. But I assure you, many do: genetic information can be stigmatizing, and while it’s illegal for employers or health insurance providers to discriminate based on that information, this is not true for life insurance, disability coverage or long-term care.[7]

Skloot’s larger argument is that the genetic information the European laboratory published, available for downloading, provided privileged information about Henrietta Lacks’s descendants as well as about Henrietta Lacks. The descendants were not given the right to decide what aspects of their personal information they were willing to share and for what purposes. The good news is that the European laboratory’s study was removed from their website and, thanks to Skloot’s facilitation, an agreement was reached that summer between the Lacks family and the National Institutes of Health about how the HeLa genome could be used.[8]

Figuring out what was wrong, in this case using genetic information without permission, is easier than figuring out what is right: figuring out what genetic information can and should be shared and how. The attention Skloot brought to the inappropriate use of the HeLa genome had the additional benefit of raising awareness of the complexity of giving consent to the use of one’s cells. As Francis Collins, then director of the National Institutes of Health noted, in 2013, “This latest HeLa situation really shows that our policy is lagging years and maybe decades behind the science. It’s time to catch up.”[9] The HeLa incident will surely help spur actions to get the right policies in place because genetic research benefits all of us. Eric S. Lander, a research scientist at Harvard and MIT observed at the time of the controversy, “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. We are going to need to have ways to have patients feel comfortable with that. We can’t do it without a foundation of respect and trust.”[10]

As if the issue of consent was not complicated enough, Skloot raised another equally complicated ethical issue to ponder: whether donors of cells, genes, or other tissue should get compensated. In the case of the HeLa cells, some research laboratories made substantial profits because of these cells. The Lacks family received nothing. Intuitively, that seems wrong. But the HeLa case is apparently an anomaly: discoveries arising from cells from one person are extremely rare. Typically, cell and tissue samples are only valuable as parts of a much larger grouping, and the contribution of individual cell and tissue samples to a discovery is hard to identify. Also, research laboratories invest huge sums of money on experiments with cells and tissue samples that do not yield marketable products, so losses in some experiments are covered by profits made in other experiments.[11]

If you are left scratching your head about how and whether cell donors should receive some share of profit from discoveries that make money, you are not alone. Experts in medical ethics are left scratching their heads too. For example, according to the Director of Vanderbilt’s Center for Biomedical Ethics and Society, Ellen Wright Clayton, “you can’t ignore this issue of who gets the money and what the money is used for. I’m not sure what to do about it, but I’m pretty sure it’s weird to say everybody gets money except the people providing the raw material.”[12] Thank you, Rebecca Skloot, for bringing public awareness to this complicated question.

I find Rebecca Skloot’s story inspiring for many reasons, including the fact that her quest to learn about HeLa cells and about Henrietta Lacks started when she was your age. Rebecca Skloot was not scared away from pursuing her passion by complexity, and she was not scared away by obstacles. As we start this academic year, I am happy to think that some of you have found topics, or will find topics, during your time at St. Mark’s, about which you will become increasingly passionate. These topics might be in any one of our academic disciplines or they might be outside the classroom or in the realm of global issues. Perhaps your HeLa cells will be found in Syria or Haiti or Martin Luther King’s work or in robotics. I look forward to learning about your passions now and, in the coming years, and I look forward most especially to hearing about how you will work to make a difference.

John Warren ’74 is St. Mark’s School’s fifteenth Head of School.  He lives on campus in Choate House with his wife, Dr. Laura Appell-Warren.  They have two children, Ethan and Amanda.  He enjoys baseball, canoeing, and fly fishing.

 

Bibliography

[1] I am indebted to Shirley Sheridan for telling me about The Immortal Life of Henrietta Lacks (New York: Crown Publishers, 2010)

[2] Immortal Life, p. 4

[3] Immortal Life, p. 2

[4] Immortal Life pp. 3-4

[5] Immortal Life, p. 6

[6] Immortal Life, p. 334

[7] Rebecca Skloot, “The Immortal Life of Henrietta Lacks, the Sequel,” New York Times, March 23, 2013

[8] Carl Zimmer, “A Family Consents to a Medical Gift, 62 Years Later,” New York Times, August 7, 2013

[9] Quoted in “The Sequel”

[10] Zimmer

[11] The Immortal Life, pp. 322-323

[12] Quoted in The Immortal Life, p. 322

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