The Immortal Life of Henrietta Lacks
I originally read Rebecca Skloot’s New York Times bestseller, The Immortal Life of Henrietta Lacks for a book club, but it offers a cautionary tale for communicators and organizations. Henrietta Lacks was a poor black woman whose cells – which were taken from her without her knowledge in 1951 – became an important medical tool.
Lacks died in obscurity from cancer – but the HeLa cells – as her cells are known – were sold and reproduced by the billions – and they were critical to developing a polio vaccine, cloning, gene mapping and much more. It was not until 1971 and 1973, that researchers published her name in association with the HeLa cells that had revolutionized cell biology. Skloot’s methodically woven story line is truthful and paints a picture of communication gone wrong.
The failure of the medical staff to communicate with the Lacks family – for decades – was heartbreaking. Her family knew little about the remarkable contribution she made to science and was so poor they could not afford health insurance. It was over lunch in the early 1970s, with a family friend who worked at the National Cancer Institute, who said he had HeLa cells in his lab that he’d bought from a supplier, that her family found out about the cells. When Johns Hopkins researchers reached out to the family in the mid-70s, it was to get blood samples so they could identify HeLa genetic markers. They never signed consent forms for the blood samples to be drawn. The family believed they were being tested to see if they had the same type of cancer that had killed Henrietta, not that they were simply being studied. When her daughter Deborah met one of the researchers who wanted to draw blood from her and peppered him with questions, instead of answering her queries, he autographed his textbook for her to take home.
It did not take long for the media to come calling after researchers began talking about Henrietta Lacks in association with the famous HeLa cell line. What they found was a deeply-hurt family who had been mis-communicated with and felt taken advantage of. While biotech companies were making millions, even billions, off HeLa cells – her family lived in poverty.
A young reporter for Rolling Stone, Michael Rogers, found himself bombarded with questions from the family, and told Skloot it was clear that the family had not been communicated with clearly or well by medical researchers. Jet, Ebony, Smithsonian and other publications followed suit and did stories about Henrietta Lacks and her family.
In a graphic ten-page chapter, author Michael Gold quoted extensively from Lacks’ medical records, in A Conspiracy of Cells: One Woman’s Immortal Legacy and the Medical Scandal It Caused. The records included many details her family did not know, including her suffering in death. Nor had her family authorized Johns Hopkins to release the records to a reporter – a major breach of patient confidentiality.
Eventually, the BBC would make a documentary in the 1980s about Henrietta Lacks. Ironically, while the documentary was in production, the Lacks family was invited to Morehouse School of Medicine, which was hosting the first annual HeLa Cancer Control Symposium. The City of Atlanta had also declared Henrietta Lacks Day, and the BBC documented the family’s road trip to the conference, where her daughter, Deborah, delivered a speech. It seemed things were changing for the family. But when a scam artist who claimed he was a lawyer got involved and tried to armtwist money out of both the hospital and the family, efforts by Johns Hopkins to honor Henrietta Lacks, which might have righted some of the wrong her family had carried for so many years, ground to a halt.
It was not until 2001, when researcher Christoph Lengauer invited the family to visit his lab at Johns Hopkins and view HeLa cells in person, that the family seemed to experience some sense of relief. The Immortal Life of Henrietta Lacks is a cautionary tale for communicators and organizations – driving home the pain and hurt that can linger for generations – when people are not treated fairly or communicated with clearly. While not a treatise or case study on public relations, the book is a call to honest and aboveboard dealings with sensitivity for institutions and the people who represent them.
|The Immortal Life of Henrietta Lacks|