INFORMED CONSENT AND CANCER: The Contrast Between Henrietta Lacks and McKenna Wetzel
A few weeks after I finished reading The Immortal Life of Henrietta Lacks, a 2010 biography by Rebecca Skloot, an article in the Newark Star-Ledger popped into my head. The article, about McKenna Claire Wetzel, and written by Sandy Kleffman in 2012, was headlined Killer Cells donated to find a cure for other youngsters. I saw a connection.
Henrietta Lacks, a 31-year-old African-American woman, died on October 4, 1951 after a documented eight months of a very aggressive, terribly painful cervical cancer. She was treated in the segregated ‘colored’ ward at Johns Hopkins Hospital in Baltimore, Maryland—the colored wards opened at Johns Hopkins in 1894 and were desegregated sometime after Henrietta died.
Henrietta’s cancer cells as well as some healthy cells were removed during a biopsy and cultured without her permission or her family’s. Dr. George Gey, the scientist at Johns Hopkins who was given the tissue samples, isolated a specific cell, named it HeLa after Henrietta’s first and last name and watched with amazement as the first human cells to grow outside the body proliferated endlessly. He made no money from the cells but shared the discovery with researchers who uncovered new scientific information that was related to, among other things, the first polio vaccine, cancer, aging, mosquito mating and an experimental launch into space.
Quickly commercialized and generating profits in the millions, the HeLa cell line benefited everyone who has ever swallowed anything more potent than an aspirin. Because there was no informed consent in 1951, Henrietta’s family knew nothing about the cells’ fame until 1973.
Important stuff? Certainly.
Years later, in August 2013, the Lacks family and the National Institutes of Health came to an agreement: a promise of acknowledgment wherever the HeLa cells were used in scientific papers as well as the appointment of two family members to serve on a six-member committee to regulate access to DNA code. Finally, after all those years, that raw issue seems to be resolved.
I know much less about little McKenna Wetzel. She was very young and therefore without a biography of note. All I know is that she loved soccer and was a bright, energetic and happy child. Her parents loved her dearly.
According to the Star-Ledger article and my own research, McKenna was seven years old when she was diagnosed with a diffuse intrinsic pontine glioma (DIPG), a particularly virulent and aggressive cancer that embeds in the brain stem. It is the second most common malignant brain tumor in school age children. Roughly four hundred cases of DIPG are diagnosed annually and almost all are fatal.
In 2011, six months after her initial diagnosis and two weeks shy of her eighth birthday, McKenna Claire Wetzel died. Shortly before her death and based on a kind neighbor’s suggestion, Dave and Kristine Wetzel made the decision—not the doctors!—to donate their daughter’s cells to Stanford University for research purposes. That caught my eye.
Although Henrietta’s cells were commonly used around the globe and in scientific papers published daily, McKenna’s donated cells were still only one of four that produced cell lines. As of this writing the investigators’ progress on mice creating DIPG-like tumors at some two dozen institutions had not yet been published.
And that brings up the issue of exactly what information is given to the patient. While not law, patient confidentiality and the Hippocratic Oath have been around since the late 400’s BCE. Patient-doctor relationships are sacrosanct. As they should be.
Informed consent is also not law. It is also not clearly understood.
Today, most institutions ask permission before surgery or any other procedure no matter how minor. The patient is given a form to sign that usually includes a line or more stating that any tissue removed may be used for “…education or research.” The Wetzels probably signed the form. Most of us have done the same.
John Moore signed it too. A plaintiff in an historic property rights battle, he was diagnosed with hairy cell leukemia in 1976. He signed an informed consent form for his surgery but eventually sued believing his doctor lied to him. He lost the case—in 1990, the Supreme Court of California ruled that a person’s discarded tissue and cells are not their property and can be commercialized. Moore appealed. The Court reversed, deciding that informed consent was inadequate because “ . . . a reasonable patient would want to know that [his/her] physician’s professional judgment might be impaired by [his/her] independent economic interest.”
And so, new laws are created and old ones change. In this case, a controversy developed because storing blood and tissues for research does not legally require informed consent. Why not?
I believe in research and education, and I believe in the truth. One of Hippocrates’ lines—to “Calmly and adroitly conceal most things from the patients,” in general has become outdated. Physicians should tell the truth and they should do it in kindly fashion. (With emphasis on kindly!).
Truth is law, law is truth.
While not helpful for the Lacks family in 1951, today The Henrietta Lacks Foundation, founded by author Rebecca Skloot, helps to provide scholarship funds and health insurance to Henrietta’s descendants. The Foundation also benefits needy individuals who have made important contributions to scientific research, particularly those used without their knowledge or consent.
The McKenna Claire Wetzel Foundation raises funds for pediatric brain cancer and for researchers working in the field.
Both foundations are badly needed and both will someday help us find the truth.
Editor: Edwin C. Goldstein
Henrietta Lacks had, in fact, a malignant adenocarcinoma, a specific type of cervical cancer, mistakenly diagnosed and discovered in 1970. In 1951 the treatment would have been the same.
In general, 1,658,370 new cancer cases are expected to be diagnosed in 2015. About 589,430 Americans are expected to die of cancer, or about 1,620 people per day. While billions are allocated to the research and fighting of cancer far more money is spent elsewhere.
To find out the various types of cancer that children are diagnosed with, please go to www.thevaleriefund.org .
My next post will be on February 1, 2016. Happy New Year!