As HBO prepares to premiere the movie adaptation of Rebecca Skloot’s bestselling 2010 book, “The Immortal Life of Henrietta Lacks,” the discussion begins anew about ethical standards related to patient specimens collected by biorepositories. It is a discussion Kyle Brothers, M.D., Ph.D., of the University of Louisville is now helping to shape.
Brothers is teaming with researchers at Case Western Reserve University to take a look at networks of biorepositories across the United States. Biorepositories are the facilities at universities, hospitals, laboratories and elsewhere where blood, tissue and other human specimens are frozen and stored, along with data about the donors of these samples.
With a four-year, $1.7 million grant from the National Institutes of Health and its National Human Genome Research Institute, the research team is examining the clash of personal privacy concerns with the need to broaden and share the tools of research – a bioethical dilemma.
That type of dilemma is at the heart of the Henrietta Lacks’ story. Poor, African American and living in segregated Baltimore, Lacks was an unwitting pioneer for medical breakthroughs when her cells were used without her or her family’s knowledge to create the first immortal cell line in the early 1950s. The HeLa cell line has become one of the most important tools in medicine, vital in developing the polio vaccine, cloning, gene mapping and more. Lacks, however, died of cervical cancer in 1951, and never knew of her contribution to medicine.
In 2013, the National Institutes of Health and some members of the Lacks family reached an agreement guaranteeing that genetic information about Henrietta’s cell line would not be shared without prior NIH review. However, profits made from use of the cell line have never been shared with the Lacks family, and as recently as February of this year, some members of the family indicated they still intend to sue for compensation.
“The story of Henrietta Lacks illustrates the kind of ethical dilemmas we wrestle with, particularly as samples and data are shared across networks of multiple biorepositories working together,” said Brothers, who appeared in 2011 on a panel discussion with Sonny Lacks, one of Henrietta’s sons, discussing these issues at Belmont University in Nashville.
“What policies should be in place to guide these efforts? What commitments have physicians and researchers made to participants? How they can keep those commitments when they share this information with others? These are the tough questions we are researching and ultimately, helping to develop frameworks for answers.”
The movie version of “The Immortal Life of Henrietta Lacks” debuts April 22 at 8 p.m. EDT on HBO.
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About ‘The Immortal Life of Henrietta Lacks’
Oprah Winfrey and Rose Byrne star in this adaptation of Rebecca Skloot’s critically acclaimed, bestselling nonfiction book of the same name. The film tells the story of Henrietta Lacks, an African-American woman whose cells were used without her consent to create the first immortal human cell line. Told through the eyes of her daughter, Deborah Lacks (Winfrey), the film chronicles her search, along with journalist Rebecca Skloot (Byrne), to learn about the mother she never knew and understand how the unauthorized — but allowed at the time — harvesting of Lacks’ cancerous cells in 1951 led to unprecedented medical breakthroughs, changing countless lives and the face of medicine forever. George C. Wolfe directs from his screenplay; Oprah Winfrey, Alan Ball, Peter Macdissi, Carla Gardini and Lydia Dean Pilcher executive produce. A Your Face Goes Here Entertainment, Harpo Films and Cine Mosaic production. The movie premieres April 22 at 8 p.m. EDT on HBO.