For this week’s assignment I am to discuss ethical principles, specifically the ethical principles that were violated during the research in regards to Henrietta Lacks. Henrietta Lacks was a wife and a mother of five. She was a black tobacco farmer and was a native of rural southern Virginia but a resident of Turner Station in Dundalk, MD. Henrietta had mentioned to family that she had felt a “knot” inside her while pregnant with her fifth child but her family just assumed that it was due to the pregnancy. After giving birth, Henrietta started bleeding abnormally and profusely. Her local doctor tested her for syphilis, which came back negative, and referred to John Hopkins. On January 29, 1951, Lacks went to John Hopkins Hospital. (Zielinski, 2010) Johns Hopkins was her only choice for a hospital because it was the only one nearby that treated black patients. A doctor by the name of Howard W. Jones examined Henrietta and the lump in her cervix. He removed a piece of her tumor without telling her and sent it to pathology.
Soon after, Lacks learned she had a malignant epidermoid carcinoma of the cervix. She was treated with radium tube inserts, which were sewn in place. It was during her radiation treatments where they removed two more pieces of her cervix – one healthy and one not – without her permission. The cells from her cervix were given to Dr. George Otto Gey. Dr. Gey “discovered that Henrietta’s cells did something they’d never seen before: They could be kept alive and grow.” (Claiborne & Wright, 2010, “How One Woman’s Cells Changed Medicine”.) Before this, cells cultured from other cells would only survive for a few days. In fact, up to this point scientists spent more time just trying to keep cells alive than doing actual research on them. However, some cells from Lacks’ tumor sample behaved differently than they had seen before. Gey was able to isolate one specific cell, multiply it, and start a cell line. Gey named the sample HeLa, after the initial letters of Henrietta Lacks’ name. Due to the fact that Henrietta’s cells were the first human cells grown in a lab that did not die after a few cell divisions, they could be used for conducting many experiments.
Her cells were considered “immortal”. This was a major breakthrough in medical and biological research. One major breakthrough was the development of a vaccine for polio. To test the vaccine the cells were quickly put into mass production in the first-ever cell production factory. Another enormous breakthrough was the successful cloning of human cells in 1955. Demand for the HeLa cells grew quickly. Since they were put into mass production, Henrietta’s cells have been mailed to scientists around the globe from “research into cancer, AIDS, the effects of radiation and toxic substances, gene mapping, and countless other scientific pursuits.” (Smith, 2002, “Wonder Woman: The Life, Death, and Life After Death of Henrietta Lacks, Unwitting Heroine of Modern Medical Science”.) HeLa cells have been used to test human sensitivity to tape, glue, cosmetics, and many other products. Scientists have grown some 20 tons of her cells, and there are almost 11,000 patents involving HeLa cells. (Batts, 2010) Neither Lacks nor her family gave her physician permission to harvest the cells. At that same time, however, permission was neither required nor usually sought. (Washington, 1994)
In the early 1970’s, the family of Henrietta Lacks began getting calls from researchers who wanted to obtain blood samples from them to learn the family’s genetics (hair color, eye color, and genetic connections). The family questioned this sudden interest and requests for blood which led to them learn about the removal of Henrietta’s cells. (Batts, 2010) Henrietta’s cells were later commercialized. In the 1980’s, family medical records were published without family consent. A similar issue was brought up in the Supreme Court of California case of Moore v. Regents of the University of California. On July 9, 1990, the court ruled that a person’s discarded tissue and cells are not their property and can be commercialized. (Skloot, 2000) In March 2013, German researchers published the DNA code, or genome, of a strain of HeLa cells without permission from the Lacks family. (Ritter, 2013)
Later, in August 2013, an agreement by the family and the National Institutes of Health was announced that gave the family some control over access to the cells’ DNA code and a promise of acknowledgement in scientific papers. Some people question the ethics of how the family was notified. Henrietta’s husband, who had a third-grade education, was called by a doctor one day and began to speak about how they had his wife’s cells. He did not even understand what a cell was. The way he understood the phone call was: “We’ve got your wife. She’s alive in a laboratory. We’ve been doing research on her for the last 25 years. And now we have to test your kids to see if they have cancer.” (Zielinski, 2010, Cracking the Code of the Human Genome: Henrietta Lacks’ “Immortal” Cells.) This is not what the researcher said at all. The scientists didn’t know that the family did not understand. From that point on, though, the family got sucked into this world of research they did not understand, and the cells, in a sense, took over their lives.
Henrietta’s daughter was most affected by this. Deborah never knew her mother; she was an infant when Henrietta died. She had always wanted to know her mother, so when Deborah found out that this part of her mother was still alive she became desperate to understand what that meant. She wondered if it hurt her mother when scientists injected her cells with viruses and toxins. She wondered if scientists had cloned her mother. And most importantly, could those scientists tell her about her mother like what her favorite color was and if she liked to dance. Scientists and physicians sometimes get caught up in the science and the excitement of discovery that they sometimes lose perspective. They assume that everyone else will understand, no matter the lengths that they go, to achieve that next discovery. One of the lessons learned from the Henrietta Lacks story is that there are human beings behind every biological sample used in the laboratory. Scientists often think of cells as the equivalent to inanimate objects.
Many times the people behind those samples have their own beliefs about what should happen to their tissue. Unfortunately, these people are ignored or simply left out of the equation. The story of HeLa cells and what happened to Henrietta has often been used as an example of racial injustice. Some people believe that something malicious has been done to a black woman by a racist, white doctor. The fact is that there are humans behind many of these scientific breakthroughs and discoveries and, sometimes even with the best intentions, things go wrong. I do not think that those people that feel that Henrietta Flack was wronged believe that tissue culture is bad. We rely on tissue culture in today’s medical society. Many drugs and vaccines would not exist today without if it were not for tissue culture. The problem that people have with it is the process that is used to acquire that tissue. We must do it in a way that is ok with everyone.
Batts, Denise Watson (2010). “Cancer cells killed Henrietta Lacks – then made her immortal”. The Virginian-Pilot. Claiborne, Ron; Wright IV, Sydney (2010). “How One Woman’s Cells Changed Medicine”. ABC World News. Ritter, Malcolm (2013), “Feds, family reach deal on use of DNA information”. Seattle Times. Skloot, Rebecca, (2000), “Henrietta’s Dance”, Johns Hopkins University. Smith, Van (2002). “Wonder Woman: The Life, Death, and Life After Death of Henrietta Lacks, Unwitting Heroine of Modern Medical Science”. Baltimore City Paper. Washington, Harriet, (1994), “Henrietta Lacks: An Unsung Hero”, Emerge Magazine Wikipedia: Henrietta Lacks. Retrieved from http://en.wikipedia.org/wiki/Henrietta_Lacks Zielinski, S. (2010). Cracking the Code of the Human Genome: Henrietta Lacks’ “Immortal” Cells. Retrieved from http://www.smithsonianmag.com/science-nature/henrietta-lacks-immortal-cells-6421299/?no-ist