ethics

jima.imana.org JIMA: Volume 43, 2011 – Page 93
The Immortal Life of Henrietta Lacks by Rebecca
Skloot. Crown Publishers, 2010. ISBN:978-1-4000-
5217-2 Hardcover-369 pages.
Henrietta Lacks (August 18, 1920, to October 4,
1951) was a poor Southern African-American tobacco farmer whose cancerous cervical tumor was the
source of cells George Otto Gey at Johns Hopkins in
Baltimore, Maryland, cultured. These “immortal”
cells remain “alive,” 60 years after her death, revolutionizing medical research.
In her 2010 book, The Immortal Life of Henrietta
Lacks, Rebecca Skloot documents the histories of
both the cell line—called the HeLa cell line after the
first two letters of her first and last names to protect
her identity—and the Lacks family. Henrietta’s husband, David Lacks, was told little following her death.
Suspicions fueled by racial issues prevalent in the
South at the time were compounded by issues of
class and education. Members of the Lacks family
were kept in the dark about the existence of the tissue line, and when its existence was revealed in a
1976 Rolling Stone article by Michael Rogers, family
members were confused about how Henrietta’s cells
could have been taken without consent and how they
could still be alive 25 years after her death. Skloot’s
book takes the reader on an incredible journey from
the “colored” ward of Johns Hopkins Hospital in the
1950s to the research laboratories with freezers full
of HeLa cells, to Henrietta’s small, dying town of
Clover, Virginia, to east Baltimore, where Henrietta’s
children and grandchildren live.
The basic facts about the story of Henrietta Lacks
are well documented. On February 1, 1951, Ms. Lacks
visited Johns Hopkins because of a painful “knot” in
her cervix and bloody vaginal discharge. After a
biopsy, she was diagnosed with cervical cancer. The
appearance of the tumor was unlike anything the
examining gynecologist, Dr. Howard Jones, had seen.
Prior to the treatment for the carcinoma, cells from
the tumor were removed for research purposes without her knowledge or permission, which was standard procedure at that time. During her second visit
eight days later, Dr. George Otto Gey obtained another sample of her tumor. These cells would eventually
become the HeLa immortal cell line. In significant
pain and without improvement, Lacks returned to
Johns Hopkins Hospital on August 8 demanding
admission and remained there until her death on
October 4 at the age of 31. A subsequent partial
autopsy showed that the cancer had metastasized
throughout her body.
Gey “discovered that [Henrietta’s] cells did something they had never seen before: They could be kept
alive and grow.” (p. 94) Cells obtained previously
from other sources would survive for only a few
days. Some cells in Lacks’ tissue sample behaved differently than others. Gey was able to isolate one specific cell, multiply it and start the HeLa cell line. As
the first human cells that could be grown in a lab and
were “immortal” (did not die after a few cell divisions), they could then be used for many experiments. This represented an enormous boon to medical and biological research. It is estimated that total
weight of all the HeLa cells ever grown exceeds 50
million metric tons.
The HeLa cells were vital for developing the polio
vaccine and uncovering secrets of cancer, viruses
and radiation effects. These cells led to improvements in in vitro fertilization, cloning, and gene mapping. Demand for the HeLa cells quickly grew. A special unit was established in Tuskegee Institute,
Tuskeegee, Alabama, where African-American scientists helped grow the HeLa cells and also evaluated
Dr. Jonas Salks’s polio vaccine. “Black scientists and
technicians, many of them women, used cells from a
black woman to help save the lives of millions of
Americans, most of them white. And they did so on
the same campus—and at the very same time—that
state officials were conducting the infamous
Tuskegee syphilis study.” (p. 97)
In 1932, 600 African-Americans, 399 with syphilis
and 201 without, were enrolled in a study to investigate the natural course of syphilis. In 1947 penicillin
was discovered as the drug of choice for syphilis, but
the study patients were denied it. This federal government-sponsored study was projected to last six
months, however, it continued for 40 years and was
Book Review
The Immortal Life of Henrietta Lacks
http://dx.doi.org/10.5915/43-2-8609
JIMA: Volume 43, 2011 – Page 94 jima.imana.org
only stopped in 1972 after public outcry. After a $10
million settlement, President Clinton in 1997 apologized on behalf of the nation.
Scientists worldwide have used Henrietta’s cells
for research in cancer, AIDS, the effects of radiation
and toxic substances, gene mapping, and countless
other scientific pursuits. HeLa cells have been used
to test human sensitivity to tape, glue, cosmetics,
and many other products. There are almost 11,000
patents involving HeLa cells.
Henrietta’s family did not learn of her “immortality” until more than 25 years after her death,
when scientists investigating HeLa began using specimens from her husband and children without
informed consent. Her family also did not see any
profits from the multimillion-dollar industry that
sells human biological materials.
Ethical Concerns
Chester Southam, a well-respected cancer
researcher and chief of virology at Sloan-Kettering
Institute for Cancer Research, sought in February
1954 to see the effect of injecting HeLa cells in
patients with cancer and in healthy controls. He
decided to do this without informing the study subjects. When three junior doctors refused on the
grounds that the study violated basic patients rights
and the research was illegal, immoral, and
deplorable, the issue was brought up in the press,
and the New York State Board of Regents conducted
hearings. The Board reprimanded Dr. Southam and
suspended his license for a year. The National
Institutes of Health also investigated and found that
research on patients without informed consent was
quite prevalent. This study identified the 22 most
unethical studies from hundreds of unethical studies. Southam’s study ranked number 17 in this infamous list.1 This spurred the need for the supervision
of research and the necessity of having informed
consent. (pp. 127-136)
Unresolved Issues: Tissue Rights
There are two key issues to deal with regarding
tissue rights: consent and money. Up to now tissue
research does not legally require informed consent.
Storing blood and tissues is a routine procedure with
no legal requirement for consent. It is estimated that
in 1999 in the United States alone, there were more
than 307 million tissue samples from more than 178
million people, and it is estimated that this number
increases by 20 million samples each year. The unanswered question is determining the “ownership” of
these biological products and cells. Once removed
from a patient, does he have “ownership” of the tissue/cells and other biological materials?
However, it is clear to me that depriving the
Lacks family of any financial gain from HeLa cells is
notright. Deborah, Henrietta’s daughter who provided most of the information for the book under
review, pointedly asked: Had scientists cloned her
mother? Had they killed her to harvest her cells?
And if her mother was so important to medicine,
why could her children not afford health insurance?
The author describes Deborah as the soul of the
book. Her spirit, her laughter, her pain, her determination and her unbelievable strength inspired the
author to work more than 10 years to research and
write the book.
In conclusion, I found the book very interesting,
absorbing, and informative. Through this book the
stories of modern medicine, the racial politics of
medicine, bioethics, and race relations in United
States are presented thoughtfully, and the Lacksfamily’s painful story is presented with grace. The
author, a young white Jewish female, had to struggle
for a long time to win the family’s confidence. Her
10-year effort has paid rich dividends, and to the
author’s credit she has established a scholarship
fund for the descendants of Henrietta Lacks.
In May 2010, HBO announced that Oprah Winfrey
and Alan Ball would develop a film project based on
Skloot’s book.
Reference
1. Beecher HK. Ethics and clinical research. N Eng J
Med. 1966;274:1354-60. http://doi.org/g4t
Book Review By
Faroque A Khan, MB; MACP
Associate Editor, JIMA
Master American College of Physicians
Professor of Medicine
State University of New York
Stony Brook, New York

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