In a
perfect world, race, ethnicity and culture would have no negative effect on the
medical care we receive. The effect is due to historical heritage more than skin
color. What is meant by this statement?
Historical
heritage is another way of saying “That’s how we’ve always done it.”
A
family’s real heritage involves where they came from, what languages and
customs and beliefs they hold. Historical heritage is an assumption made about
a person because of socio-economic trait that leads to a generalization about a
person because they belong to a specific, pre-determined, group of people that
also share that trait. A person’s real
heritage may be very different from a perceived historical heritage, but the
result of this type of stereotyping is precisely what happened to Henrietta
Lacks and her descendants. The medical profession had always treated poor,
black people with about the same level of concern as they had for laboratory
mice. Uneducated people didn’t ever need to consulted about their health care
because doctors assumed that they could not even understand their diseases.
Even if Henrietta had been white, any number of other factors could have
contributed to what happened to her and her family.
Ethics
The ethical aspect of how
Henrietta Lacks and then her family were treated are numerous. There are
examples throughout the book that illustrate a complete absence of ethics when
compared to health care today. The two most
egregious examples show the utter disregard that was shown the Lacks family.
“Like many doctors of his era, TeLinde often used patients from
the public wards for research, usually without their knowledge. Many scientists
believed that since patients were treated for free in the public wards, it was
fair to use them as research subjects as a form of payment. And as Howard Jones
once wrote, “Hopkins, with its large indigent black population, had no dearth
of clinical material.” 1 (29-30)
The assumption that a
patient under their care deserved no compensation for being the subject of research,
by today’s standards, is questionable. However,
the fact that many doctors didn’t even communicate to the patient that they
were being used in research experiments illustrates what little regard they had
for their “free” patients as humans.
“What do you mean, ‘everybody else’?!” Bobbette snapped. “What
supplier? Who’s got cells from my mother-in-law?” It was like a nightmare.
She’d read in the paper about the syphilis study at Tuskegee, which had just
been stopped by the government after forty years, and now here was Gardenia’s
brother-in-law, saying Hopkins had part of Henrietta alive and scientists
everywhere were doing research on her and the family had no idea. 1 (180)
This paragraph illustrates both the lack of
ethics and the “historical heritage” applied to Henrietta’s family regarding
HeLa cells. Unauthorized, uncompensated
and uncommunicated research had been going long before Henrietta, and despite
limited change in attitudes on the subject, her family found out that it was
still going on and affecting their family directly.
Health Literacy
Henrietta and her family
honestly didn’t have a great deal of health literacy, and due to their
historical heritage, they were not likely at all to obtain any.
There’s no indication that Henrietta questioned him; like most
patients in the 1950s, she deferred to anything her doctors said. This was a
time when “benevolent deception” was a common practice—doctors often
withheld even the most fundamental information from their patients, sometimes
not giving them any diagnosis at all. They believed it was best not to confuse
or upset patients with frightening terms they might not understand, like
cancer. 1 (63)
In this example, heath
literacy would remain stagnant for two reasons: Henrietta wouldn’t have been likely
to ask many questions, and her doctor wouldn’t have been likely to volunteer
information. This also shows that
historical heritage can sometimes even impact a person’s view of
themselves. Not questioning your doctor
during this era was not necessarily even a black patient or white patient
issue, it was just how it was, for everybody.
Communication
The communication style
used will often depend on the assumed level of understanding of the individual
being communicated with. In the case of
the doctors communicating with Henrietta and her family, only as much information
as was needed was given. In the example
below, the doctors kept the message simple and repetitive, to the point of
pestering. At certain point they may have seen an opening in which Day’s cousin
could help their cause. It was at that
point that it was shared that the research might help his family. They only referred to the procedure as “tests”
– only as much information as they needed to share in order to accomplish their
uncommunicated goals.
The way Day remembers it, someone from Hopkins called
to tell him Henrietta had died, and to ask permission for an autopsy, and Day
said no. A few hours later, when Day went to Hopkins with a cousin to
see Henrietta’s body and sign some papers, the doctors asked again about the
autopsy. They said they wanted to run tests that might help his children
someday. Day’s cousin said it wouldn’t hurt, so eventually Day agreed and
signed an autopsy permission form. 1 (89-90)
Health disparities
The passage below is a
striking example of how historical heritage caused Elsie to not only spend her
life in an institution, but to die there.
All of the other aspects, communication, ethics and literacy played into
what happened to Elsie, when the family was told about her and how she was
treated while institutionalized.
Soon after Elsie’s death, a new warden took over at Crownsville
and began releasing hundreds of patients who’d been institutionalized
unnecessarily. The Washington Post article quoted him saying, “The worst
thing you can do to a sick person is close the door and forget about him.” When
I read that line out loud, Deborah whispered, “We didn’t forget about
her. My mother died … nobody told me she was here. I would have got her out.” 1 (276)
One of the aspects of this book that I found
the most interesting was that throughout the story, the Lacks and Lee families
never were compensated and never shared in any of the glory or thanks for what
Henrietta contributed to science and medicine.
The CNN news story referenced here discusses answers two questions
raised by the story of Henrietta Lacks.
Not only did the families eventually get a say in the future
distribution of HeLa cells and what kind of research could be performed with
them, they also helped reform genetic research ethics and an end (hopefully) to
the kind of unethical use of any kind of test results from medical procedures
or research.
This quote from the CNN article displays what
is now a common framework when dealing with privacy and permission to use
research in the medical field.
"What happened with Henrietta Lacks is
beyond-the-pale horrible, and we don't want that to happen again," said
Dr. Robert Klitzman, director of the Masters of Bioethics Program at Columbia
University and author of "Am I My Genes?: Confronting Fate and Family
Secrets in the Age of Genetic Testing." 2
"We owe it to people to give them a
choice: 'Do you want to do this research even if it is a potential risk to your
privacy?'" 2
References
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1.
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Skloot R. The
immortal life of Henrietta Lacks. New York: Crown Publishing Group;
2010.
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2.
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Smith S. Family
finally has say on HeLa cells' destiny - CNN.com. CNN Health. August
11, 2013. Available at: http://www.cnn.com/2013/08/07/health/henrietta-lacks-genetic-destiny/.
Accessed January 29, 2017.
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