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{\it Some Study Questions for Skloot, The Immortal Life of Henrietta Lacks}
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{\bf Part One}
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\item{1.}  Have you or a close family member ever had a major
illness requiring extensive hospitalization?  If so, how did 
the treatment you got from your doctors compare with the treatment 
that Henrietta got?  If you got the kind of medical care that Henrietta did
at Johns Hopkins, would you be satisfied?  Have things changed
since the 1950's?
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\item{2.}  What are the facts behind the Tuskegee syphilis study
described on pages 50 and 51?  (You may want to look into this
in more detail in other sources.)  What was the real ethical issue
here?  Was it the mere fact of doing a study like this at all?  Was it the fact
that an effective treatment for syphilis became available after the
study started, but the study went on unchanged?  What effects 
do you think the revelations of the way the study was carried out
had on the level of trust African-Americans had in medicine and
government agencies?  What other studies like this are mentioned
in the book?  
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\item{3.}  Neither Henrietta nor her family ever had much 
education and they spoke (still speak in some cases) what amounts to a Southern country 
dialect of English.  Rebecca Skloot's choice to portray their 
patterns of speech as she does has been perceived as offensive 
by some people.  Why do you suppose this is true?  
 Do you agree with that point of view?  (How do people
judge others by their accents or speech patterns?) 
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\item{4.}  What do you make of George Gey?  Do you think he was 
an admirable person?  Do you believe the story on page 66 about
his supposed conversation with Henrietta before her death?  
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\noindent
{\bf Part Two}
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\item{5.}  What are the currently accepted basic ethical principles for
studies involving living human subjects?  What are some of the documents or
statements embodying these principles?  (Again, you may want to look
at other sources.)  What do you think about the 
studies described in Chapter 17?  Why is genetic research on human 
subjects especially sensitive?  Should studies conducted using
tissues collected from no-longer-living
humans be subject to the same kind of restrictions as those
involving living human subjects?  
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\item{6.}  What is the point of the anecdote that starts at the 
bottom of page 90 and goes over to the top of page 91?
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\item{7.}  Why do you suppose that George Gey was so deceptive
about the identity of the subject that HeLa cells came from?
(See p. 108-109.)
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\item{8.}  This is bound to be a sensitive subject, but here goes: 
What do you think of Henrietta's family?  What does it mean when
one of them says that Henrietta's sister Lillian ``converted to 
Puerto Rican?''  What does this tell us about their view of themselves?
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\item{9.}  HeLa cells have been both essential tools in medical
research and huge problems in that research.  Why have they sometimes
been such a problem?
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\noindent
{\bf Part Three}
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\item{10.}  What were the major issues for Henrietta's family with
the way her cells were used?  Was it that she had not given her consent
for that use?  Was it that others were profiting monetarily and they felt they 
were entitled to some part of that?  Was it that they wanted Henrietta
to be properly recognized?  Was it different for different family 
members?  Has it changed now?
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\item{11.}  Another sensitive question -- what does it mean to 
get informed consent for a medical study if the person involved
does not understand any of the basic science involved?  Does
the researcher have the obligation to educate them so that they
can understand? 
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\item{12.}  Who was John Moore?  Why is his story relevant here?
What was the ultimate outcome of his lawsuit?
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\item{13.}  What actually caused the ``immortality'' of the HeLa
cell line?
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\item{14.}  What do you think about Henrietta's daughter Deborah?
Why was she so set on finding the records about her mother and
her older sister Elsie?  Why was she so suspicious of Rebecca 
Skloot at first, and intermittently throughout their relationship?  
Do you think Deborah found any peace after learning 
what she did?  
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