The fascinating case of Henrietta Lacks has many good research paper topics. The case is still being debated 60 years after the African-American woman died in 1951. Her case raises questions of medical ethics, medical research, privacy and patient’s rights.
Rebecca Skloot wrote a book about Lacks, and this week, HBO is playing a movie, The Immortal Life of Henrietta Lacks, based on the book, starring Oprah Winfrey. The “immortal” in the title refers to cells taken from Lacks, which are still alive today.
Cancer cells survive outside the body
Henrietta Lacks, a mother of five, was diagnosed with cervical cancer. Some of her cells were removed from her body and examined. Lacks died in 1951 at the age of 31. It was soon discovered that her tumorous cells were able to live and reproduce outside the body, a rare ability. Because Lacks’ cells remained viable, they were cultured, grown, shipped around the world, and used in various medical experiments. Lacks’ strain of cells became known as HeLa (pronounced HEE-luh) cells and have so far been used in 74,000 studies of cancer, cell biology, vaccines, gene mapping, in vitro fertilization and cloning. University of Washington researchers did a DNA sequence on the HeLa cell line, making these cells the best-studied cells in the world.
Controversy and medical ethics questions
A good research paper topic is to discuss medical ethics and patient’s rights. The controversy about the Lacks case is that no medical company or researcher asked for the consent of Lacks or her family to use her cells. In the decades after Lacks’ death, scientists and pharmaceutical companies have made billions of dollars on lucrative drugs made from research using her cells.
No one in Lacks’ family even knew of the important medical uses of the cells until 1973 when a researcher approached Lacks’ children to do research on inheritance. Lacks was a poor, uneducated black woman in the 1950s, and no one at the time thought to ask her consent to use her cells for future medical research. Her descendants were also omitted from any consent for decades. In 2013, the European Molecular Biology Laboratory published the HeLa cell genome online for public use, without the Lacks’ family consent. Many scientists are stunned that this is still happening in modern times.
Issues of privacy
You could use the Lacks’ case to write a research paper on medical privacy. In the article, “Family Consents to a Medical Gift Descendants of Henrietta Lacks Get Say on Immortal Cells That Led to 74,000 Studies,” by Carl Zimmer in the Pittsburgh Post-Gazette August 8, 2013, Lacks’ granddaughter Jeri Lacks Whye, said, “The biggest concern was privacy—what information was actually going to be out there about our grandmother, and what information they can obtain from her sequencing that will tell them about her children and grandchildren and going down the line.”
The industry is finally changing. In “The Immortal Life of Henrietta Lacks, the Sequel” by Rebecca Skloot, March 23, 2013, in the New York Times, Francis S. Collins, director of the National Institutes of Health (NIH), said: “This latest HeLa situation really shows us that our policy is lagging years and maybe decades behind the science. It’s time to catch up.” The NIH now requires researchers to submit applications and reports about research done with the HeLa cells. The NIH also created the HeLa Genome Data Access Working Group on which sit two of Lacks’ family members who have input into how the HeLa genome is used.
Book and movie
You could write a research paper on the impact of publicity about the Lacks case. In 2010, reporter Rebecca Skloot wrote a book about the case, The Immortal Life of Henrietta Lacks. At the time, Skloot wrote, “Henrietta’s cells have been bought and sold by the billions, yet she remains virtually unknown, and her family can’t afford health insurance.” In 2017, an HBO movie was released based on Skloot’s reporting and reaction of the Lacks family.
Do you think there should be more transparency and consent in medical research?