Exploitation and Scientific Discovery

HeLa cells

One of my graduate students is at the tail-end of her thesis on science communication: a look at how folks talk about a best-selling book in online conversations. She defends her thesis this week.

The book, The Immortal Life of Henrietta Lacks, was a 2010 best-seller (now in paperback) that recounts how an impoverished woman’s cells became the benchmark for important scientific studies—from AIDS to Polio.

The woman, Henrietta Lacks, went to a Baltimore hospital in the 1950s when she felt a “knot” inside her.

Philanthropist Johns Hopkins had created a hospital and established in his trust that the hospital should care for the poor (regardless of race) and that wealthier patients would subsidize the poor.

One of Lacks’ doctors routinely extracted cells from his patients—not an unusual or rare practice—and tried to grow cells outside the human body. The physician figured that, if you could grow cells outside the body, then you could more readily study cell growth in a lab setting: essential for scientific research.

Turns out Lacks’ cells thrived outside her body, and continue to grow, long after she died from cancer. Unknown to her family, the cells—called “HeLa” for Henrietta Lacks—became essential for scientific study: the sine qua non of cell research.

My student, Melissa Shavlik, wanted to see how the book was discussed online. In her book Rebecca Skloot maintains a journalist’s objective stance, presenting information for the reader rather than making ethical judgments.

But online stories often assumed an ethical mantle. Turns out that HeLa cells were later snapped up by a company that now sells them for profit. Henrietta’s family knew nothing about the cells, the science, or the research until Skloot began gathering information for her book. Her family receives no compensation for Henrietta’s cells.

Melissa found that much of the ethical conversation can be traced to one individual: Oprah Winfrey. After Oprah recommended the book to readers and announced she would make a TV movie about Henrietta Lacks, the story spread quickly on the internet, often framed as a story of exploitation.

Melissa figures that the power of Oprah isn’t so much that she can frame an issue, but rather that a story can spread like wildfire on the internet because Oprah is the person who introduced the story.

Pictured: HeLa cells from http://encorbio.com/monoclonal/MCA-39C7.htm


About Cynthia Coleman Emery

Professor and researcher at Portland State University who studies science communication, particularly issues that impact American Indians. Dr. Coleman is an enrolled citizen of the Osage Nation.
This entry was posted in ethics, framing, health, science, science communication, Uncategorized and tagged , . Bookmark the permalink.

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