BOOK NOTES - Book explores ethical boundaries of medicine


In 1951 George Gey (pronounced Guy) was successful in growing the first "human" cells in his laboratory at John Hopkins University Hospital. The cells belonged to a black woman named Henrietta Lacks who was being treated for cervical cancer. Because of their ability to grow so quickly and so well, these cancer cells became the most famous and most used cells for research in the world. Gey named the cell line HeLa (Hee-Lah) for the first and last name of the donor.

"The Immortal Life of Henrietta Lacks" by Rebecca Skloot chronicles both the history of the HeLa cells and Henrietta's family. The author's research on the uses of the HeLa cell line to cure various diseases is as fascinating as the story of the Lacks family. Her writing style makes science interesting and understandable to the layman. Skloot also raises ethical questions about the use of human subjects and human tissue in research.

Henrietta Pleasant Lacks was born in August 1920 and died in October 1951. Before she died, she had five children with husband David Lacks. Her family did not know that Henrietta's cells were being used in research until June, 1973 -more than 20 years after her death. Scientists needed blood samples from the Lacks family to figure out Henrietta's DNA. The family members were not told why the blood samples were being taken or what samples were going to be used for. The treatment of the Lacks family by the scientific community and the family's expectations for financial rewards for the use of Henrietta's cells are an important part of Skloot's book.

HeLa cells have been workhorses in the cell industry. In 1952 HeLa cells were grown by the millions at Tuskegee Institute for polio testing. Over the years, HeLa cells have been exposed to herpes, measles, mumps, chicken pox, encephalitis and HIV viruses. They have been used to test cosmetics and pharmaceuticals. Scientists use HeLa cells to examine the effects of steroids, chemotherapy drugs, hormones, vitamins and environmental stress. They were used in the Human Genome Project to advance DNA research.

In 1984, German virologist Harald zur Hausen detected how Henrietta's cancer started and why her cells never died. Zur Hausen discovered a new strain of a sexually transmitted virus -- Human Papilloma Virus 18 (HPV-18) that he believed caused cervical cancer. Cells from Henrietta's original biopsy showed she had been infected with HPV-18, which turned out to be one of the most virulent strains of the virus. Scientists found that when they blocked the HPV's DNA, cervical cancer cells stopped being cancerous. These discoveries led to the HPV vaccine and earned zur Hausen a Nobel Prize in 2008.

Skloot also documents the evolution of patient consent in medical practice. In the 1950s, doctors used the tactic of "benevolent deception," which meant withholding fundamental information from patients, believing that it was best not to confuse or frighten patients with a diagnosis that they might not understand. There was no formal oversight of human research in the United States. Bills regulating human experimentation had been voted down for fear of interfering with the progress of science.

The term "informed consent" first appeared in a civil court ruling in 1957 where a judge ruled that a doctor was required to give a full disclosure of facts and possible outcomes to patients allowing them to give "informed consent" before any procedures.

Some of the uses of HeLa cells have not been so useful or benign. In 1956 Chester Southam, a cancer researcher at Sloan-Kettering Institute for Cancer Research began injecting HeLa cells into the arms of unsuspecting patients to test his theory that cancer was caused by a virus or immune system deficiency. Southam did not tell patients he was injecting them with cancer cells.

In 1963 Southam was sued by doctors at Beth Israel Hospital for not getting "informed consent" from patients who got the cancer injections. Scientists argued that they had been doing similar research for decades and it was unnecessary to disclose all information to research subjects or get consent.

Beginning in 1966 the National Institutes of Health required detailed "informed consent" for federally funded projects using human subjects. This policy led Science Magazine to warn: "When we are prevented from attempting seemingly innocuous studies of cancer behavior in humans, we may mark 1966 as the year in which all medical progress ceased."

When you go to the doctor for a routine blood test, have a mole removed, or an appendectomy, a tonsillectomy, or any other "-ectomy," the tissue you leave behind is not always thrown out. Scientists may use these tissues to develop new drugs and vaccines.

Skloot questions if it is legal for doctors to use patient cells without their knowledge. What are the ethics of doctors using tissue scraps that you parted with voluntarily, especially if they might be making money off those scraps? Are doctors required to tell you when they are using your cells in research? Should patients benefit from commercial use of their tissue? Are people morally obligated to allow their tissues to be used to advance knowledge to help others? As of 2009, no case law has fully clarified whether you own or have the right to control your cells or tissue.

Be sure to read "The Immortal Life of Henrietta Lacks" for the discussion of these ethical and legal issues. The story of Henrietta's family adds a human perspective to this dilemma.


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