Civil Rights within the scope of medical research have
undergone many shifts in its ethics and practices. The study of medicine has significantly evolved
since its inception. Further, medicine has always been at the borders of
popular ethics. For many years, because
of religious doctrine or otherwise, performing surgery on another person was
illegal. In lieu of living tissue for
research, some researchers in the medical community obtained close-to-living
tissue by grave-robbing freshly buried bodies (Porter, 54). Many today would be surprised by the
Hippocratic Oath’s original intention. The
oath was, in fact, engaged “to protect doctors, through a guild-like closed
shop, no less than to safeguard patients” (Porter, 31). Throughout history, the dramatic shift from
research ‘in the interest of medicine’ to research ‘in the interest of the
patient’ is seen in Henrietta Lacks’ story – The Immortal Life of Henrietta Lacks by Rebecca Skloot – along with
countless other instances, and is a representation of the dramatic progression
of medicine & medical research ethics and its relation to Civil Rights
debates throughout history.
The perception and function of doctors today is actually
quite different than that of their earlier kinsmen (Porter 23). However, the near-exploitative, taboo nature
of medical research – undercover grave-robbing in the name of science, for
example – has usually been consistent.
Alexis Carrel, a French surgeon at the Chicago Rockefeller Institute, was
lauded by the medical community for his miraculous and living “immortal chicken
heart” in 1912 (Skloot 333). Carrel,
however, deceived the medical community – and managed to do so for many years –
until his fraud was discovered. Carrel’s “discovery” opened many doors for him;
his book Man, The Unknown permitted
him to declare his Nazi eugenic ideals in a public forum. Carrel believed that the U.S. Constitution
should be changed to say that “the feeble-minded and the man of genius should
not be equal before the law” and that “the stupid, the unintelligent” do not
have a right to obtain an education. In the end, however, Carrel died while on
trial for assisting the Nazis and his un-miraculous chicken heart was
“unceremoniously” thrown into the round file (Skloot 62). Carrel was not the only medical researcher
who believed that minorities and the less fortunate were not true citizens
under the U.S. Constitution. Minorities
have been specifically targeted for laboratory research. A team of researchers review the ethics of
research, and discuss their findings in their article Twenty-first Century Ethics of Medical Research Involving Human
Subjects: Achievements and Challenges.
The Tuskegee Study, funded by the United States Public Health Service (155),
observed the natural progression of syphilis in African-American volunteers
(well after penicillin was known to be an effective treatment). The subjects were not told about the nature of
the study, but they were offered incentives for participating (Skloot 50). Further, an Illinois prison voluntarily
infected its population with malaria, and institutionalized children who carried
down syndrome were infected with hepatitis B under the coerced consent of the
parents (Tzamaloukas 155). Henrietta
Lacks, a black woman dying from cervical cancer, had a hope of survival through
Johns Hopkins Hospital. Lacks, like many
other minorities, was turned away from smaller hospitals because she was black,
and her only hope was in the hands of the medical teams at Johns Hopkins.
Lacks’ cancerous cervical cells were taken without her consent, and researchers
hoped to grow cells to sell for profit and for research. Sadly, Lacks, like many other patients in her
situation, died a slow and painful death, yet her cancer cells live on across
the world today (Skloot). Johns Hopkins profited
from the sale of Lacks’ “immortal” cells, and the larger ethical debate was
that the family was not compensated nor informed of the cell culture’s
existence (Skloot). There were many
arguments for and against this ethical debate and they are still discussed
today in many forums. The Lacks family
could not afford basic health insurance, were not compensated, “even though
[Henrietta Lacks’] cells have led to millions of dollars in profit.” Johns
Hopkins argues that that “the family’s inability to afford health insurance is
not the fault of JH” (Baker 340). In
fact, the first recorded public human dissection circa 1315 in Bologna, Italy
gave rise to new areas of profit on a larger scale in the medical community. Until then, anatomy had little to do with the
standard medical education and, as a result of this new anatomical knowledge,
the need for anatomy theatres spread like wildfire throughout Italy and by 1550
became a standard teaching implement (Porter 55). Overall, new ways to profit in medicine were
seen in the expansion of existing research facilities and hospitals, as well as
the erection of new research facilities (55).
The evolution of medical ethics in relation to civil rights
is also present in the change from maternal to paternal obstetrics. Female midwives were frequently marginalized
and replaced by a male-dominated medical society (Porter 117). “As it makes clear, Hippocratic medicine was a
male monopoly, although physicians expected to cooperate with midwives and
nurses” (31). Clearly, the widening
divide created by patriarchal medicine has had its influence over women’s
rights. Present debates such as stem
cell research and abortion are in the hot seat and, perhaps with further
contemplation, begs the question: If there was no shift from female midwifery
to male accoucheurs, would there even
be a stem cell or abortion debate today (119)? The male dictum in regards to the rights and wrongs
of childbirth, childcare, and all-encompassing knowledge of the female
reproductive system is curiously in the hands of a group of males rather than
first-hand female expertise. The shift
to male expertise in a “woman’s world,” along with other socio-cultural elements
in the 1960s, brought to a head the great emergence of the feminist
movement. The battle between the sexes
progressed well into the 1970s and cases that involved women’s reproductive
rights, such as the prominent abortion rights case of Roe v. Wade,
emerged. Ultimately in Henrietta Lacks’
case, her doctors and their peer associates were all male, and further, they
sought out Lacks’ tissue – the tissue of a poor, black female – without her
consent and it was in the interest of medicine and not in the interest of Lacks’
well-being (Skloot).
The
argument that many medical researchers held was that “the principle of the
common good was used to justify some of the human experiments…” and two
philosophies were used to support the experiments (Tzamaloukas 155). The first philosophy stated that “biological
thinking” was the professional attitude that leads a researcher to perceive a
human subject as nothing more than merely a “series of biologic events…a mere
object, like a mail package” (156). The
second theory used to justify human experimentation was Social Darwinism, where
a misinterpretation of Darwin’s Theory of Evolution led many to assign
inferiority to certain races (156). These
philosophies and the practices that followed fueled many arguments. There were other debates out there similar to
the Lacks’. The case of Moore v. Regents of the University of
California was referenced in an argument against the Lacks family by Johns
Hopkins defense attorneys (Baker 340).
The Lacks Family prosecutors stated that Henrietta Lacks never consented
to tissue collection for research and that Johns Hopkins directly violated the
“due process clause of the 14th Amendment” and the search-and-seizure
clause of the 4th Amendment because Lacks had cells removed post
mortem without the family’s consent.
Johns Hopkins argued that patients have no rights to tissue once it
leaves the body (as in Moore v. Regents),
and that there are no laws “protecting a patient from the nonconsensual use of
their cells” (340). Overall, Johns
Hopkins argued that, in Henrietta Lacks’ case, it was a justification that
benefitted society.
Skloot
writes that most Americans today have their tissues on file in some research
laboratory, and a message from The
Immortal Life of Henrietta Lacks is that the practice of nonconsensual
research still exists today. The divide
between science and humanity has always been a grand balancing act. The eugenic ideals of the Nazis and the
resulting Nuremberg trials, the deadly Japanese experiments on Chinese
prisoners, emerging technologies, globalization, the shift in cultural
attitudes, and even the publication of The
Immortal Life along with other human research experiments in America
combine to propel the ever-changing shift in medical research ethics. Perhaps the Lacks family did not get the
ultimate in terms of compensation and emotional vengeance, but what Henrietta
Lacks and many others like her contributed to society, to the awareness and
evolution of civil rights, and to science was a foundation of medical research
ethics, accomplished “at the cost of enormous suffering by innocent subjects
studied in research studies that violated the Hippocratic code” (Tzamaloukas
161). Perhaps someday medical research
can be fully accomplished without violation, exploitation, or corruption, but now
is not that time, as Skloot explicitly reveals.
Works
Cited
Baker, Stacy. "Life After Death: An Activity to
Investigate the Scientific, Legal, & Racial Issues of the Henrietta Lacks
Story." The American
Biology Teacher 73.6 (2011):
337-40. ProQuest. Web. 6 May 2013.
Porter, Roy. Blood
& Guts: A Short History of Medicine. New York: Norton, 2002. Print.
Skloot, Rebecca. The
Immortal Life of Henrietta Lacks. New York: Broadway Paperbacks, 2011.
Print.
Tzamaloukas, Antonios H., et al. "Twenty-First Century
Ethics of Medical Research Involving Human Subjects: Achievements and
Challenges." International
urology and nephrology 40.1 (2008):
153-63. ProQuest. Web. 6 May 2013.
