A. Bacon Moore, Ph.D.

Class notes I generated for HeLa book club discussion.

HeLa.
Day 1 of Book Club

I started class by Reading A Few Words About This Book.

I read this aloud and the students listened.
In this section, Skloot talks about her efforts to honor the truth of the story.
Building on that, I opened the room up for the discussion.

Discuss & have the kids generate a list of the following topics in terms of their
thoughts and ideas.
1. Honoring the truth.
2. Ground rules for our class book club.
3. Research:
a. Why would a scientist conduct research?
b. Why would someone volunteer to be in a study as a subject?
4. What do we as a community expect from people who do research? What
are our beliefs and expectations about research findings and the data we
read about/ hear about?
Below are the themes that emerged from these conversations across my three classes.
1. Honoring the Truth (much of this is embedded in the “ground rules”
below). I brought this up as first topic and told the students what I thought this
meant in terms of science. Then, I asked them to reflect some on why Skloot
delves into this in “A FEW WORDS…”. So, point A below is mine (but the
students did discuss it). The other two points are summaries of ideas the
students more or less came up with.
a. This is really a core principle of science. We can’t make up data or make
up fact. We need to do our best to be good observers of the world around
us.
b. Sometimes “truth” is not how we would have wanted / wished it to be, but
we can benefit from looking at it directly and being open to the learning
that comes from it.
A. Bacon Moore, Ph.D.

Class notes I generated for HeLa book club discussion.

c. It is painful when you try to tell “your truth” and people don’t listen to you
or believe you or try to make you change how you tell it.

2. Ground Rules for Class Discussions

a. Respect – for differences of opinion and personal beliefs. Respect for
different experiences we all have had.
b. Maturity – we are dealing with some tough topics. There will be topics that
might make us, as a group, or us individually, feel uncomfortable. Efforts
to be mature through these moments. What does that look like?
c. Engagement by all in room – we are taking a risk in being willing to be
open and have meaningful dialogue. It will be “weird” if not everyone has
a voice. That means “big talkers” need to be aware, too and let other folks
have a chance to speak up.
d. Confidentiality – we need to be aware of when folks find the courage to
share something that might be sensitive or make them vulnerable and not
use that against them later. People’s willingness to share and truly
engage in a book club makes the book club better, so we don’t want to
compromise that.
e. Emotional Reactions to the book (n.b.: I did most of this facilitation. I was
trying to “normalize” emotional reactions the kids might have to the book
up front to minimize embarrassment down the road).
i. Parts of the book might be funny. It’s okay to laugh. Outloud.

ii. Parts of the book might be sad or make you angry. These are
feelings we can talk about in here.
iii. This book deals with tough topics. Very real things that have a very
real impact at the personal and societal level. We are going to read/
talk/ think about things you might not have expected in a science
class. This book deals with racism, incest, illness, sexually
transmitted diseases and death. There is a lot here. (I pretty much
said this almost exactly to the students because I wanted to be
very clear about what I meant by tough topics… I did not want
surprises for them in this regard).
iv. You may end up feeling uncomfortable during some class
discussions and start to do the nervous giggle that you can’t stop
(people brought up the laughing in church scenario). We said,
A. Bacon Moore, Ph.D.

Class notes I generated for HeLa book club discussion.

that’s okay. It’s just a human reaction. Laugh. Get over it. Move
on.
f. Honor one another’s truth.
i. As well as you may know some of the people in this room, there are
things about your classmates that you don’t know. When you make
a flip comment, laugh at something, have a crass thought, you have
no idea how that impacts the person sitting next to you.
ii. Every single person in this room has vulnerabilities. Things you
don’t want others to know about you. Things that make you afraid
or sad or weak. We will maintain an awareness that we all walk
slightly different paths and we all have different perspectives. This
can enrich our discussion.

* we spent quite a while on the rules. Everyone in the class agreed to them
before we moved on. The exact details of the rules may have been slightly
different across the three classes I teach, but the themes were consistent.

3. Benefits of Research & Why would someone agree to do research as a

subject? (I made this really open ended. Just basically asked the students to
think about and toss out ideas).

a. Improve the world

b. Altruism
c. Develop better solutions
d. Come up with cures
e. Make new discoveries
f. Progression of society
g. Money
h. Coercion
A. Bacon Moore, Ph.D.

Class notes I generated for HeLa book club discussion.

* one conversation starter is to get folks thinking about whether or not they
are organ donors. What did they picture when they checked that box off?
Did they picture their liver could end up in a petri dish at emory for a first
year medical student to dissect? How does that feel? Do you feel
deceived by that? Does it matter?
* have you ever had a mole removed? What happened to that mole after
you left the doctor’s office?
*the students did not really know exactly what was coming in the book, but
I used these questions just to try and get them to think about the feeling of
“being duped” or feeling betrayed by a system/ entity that they are often
taught to trust.

4. Expectations & Responsibilities of Research and Researchers

a. Honesty
b. Do no harm
c. Share their results
d. Know the previous research being done
e. Understand “best practices” in terms of statistics and methods
f. Not make the data up
g. Keep personal stake out of it (don’t force something with the goal of fame
and riches)… so: how do business/ industry and science merge? THINK
ABOUT PHARMECUETICAL COMPANIES. – this became an interesting
side conversation in one class.
h. Tell the truth
i. Accuracy and validity in data
j. Create and stick to a protocol
k. Physical safety
l. Respect my beliefs and feelings
m. Be free of prejudice and racism and other –isms.

HeLa, Day 2 of Book Club

A. Bacon Moore, Ph.D.

Class notes I generated for HeLa book club discussion.

In the next hour of class, we did the following. You will notice right away that I did
not start off with chapter 1. I wanted to start with 6 b/c I’d already read the
students the prologue and I wanted to continue with Skloot’s story of the effort to
start the her research. Plus, I knew there would be an interesting and quick
“hook” for the students. Tuskegee.
Read Chp 6 _ page 49 – 51.
We moved the desks out of our way and arranged our chairs into a big circle. Students
took turns reading aloud from Chp 6.
“Lady’s on the Phone”
1. Reactions to learning about the Tuskegee experiments
a. No one had heard of this.
b. I decided we could not fully process this until we talked more about
syhipis. And, in high school bio, we teach sex ed. This was the perfect
chance to really teach these kids about an STD in a very connected and
real way (and, honestly, I figured it would be a good way to minimize
some discomfort for the students because we really needed to understand
syphilis/ how it’s transmitted/ how it’s treated/ how you avoid spread) in
order to fully appreciate the Tuskegee study.
2. Syphilis fact sheet and hand out. I distributed copies of the CDC
document/ fact sheet.
a. Read Aloud the sections called:
i. How do people get syphilis?
1. Points we made in class: syphilis is really easy to spread.
Lots of folks can get it. So, it’s worth treating. This is an
“important issue.” We understand that folks would want to
research it and figure out how to take care of it.
ii. What are the Signs & Symptoms?
iii. How can syphilis be prevented?
1. Paragraph 1 & 3
3. Read “Effects of Untreated Syphilis in the Negro Male, 1932 – 1972” I did a
literature search to find the source documents/ original articles, printed in the
1950s by the scientists who actually conducted the Syphilis studies. It’s not too
hard to find electronic reprints of these scientific, peer-reviewed publications. I
had multiple motivations for doing this, but I wanted the students to see that this
A. Bacon Moore, Ph.D.

Class notes I generated for HeLa book club discussion.

study “was real.” All kinds of things get printed up and put out for dissemination
and use by others. This led to great conversation (ala the Nuremburg trials as
well… should we use data gathered by unjust/ unethical means?).
a. What’s the rationale for reading this?
i. The scientists who did this really believed in what they were doing.
ii. They justified it by saying that there were not treatments for the
disease when they started the study anyway (they were wrong, but
that’s what they believed).
iii. True scientific method, devoid of a moral compass/ social
judgment, is that you do not alter the methodological approach.
You develop and course of action and remain true to it.
iv. What is informed consent?
1. You read and sign this when you go to the doctor.
2. You would be asked to read and sign it when you are in a
research study.
3. How would you feel if information about you was put into a
research study and you did not know it?
v. This paper introduces the Declaration of Helsinki.

1. This Declaration feeds off of the Nuremberg Code.

a. Discuss Nuremberg Code.

b. http://www.ushmm.org/research/doctors/index.html

* we did FAR LESS with this that I would have wanted to do,
but we do come back to it very soon. I just had way to much
planned for this day and the students had lots they needed
to process and discuss about Tuskegee. Tuskegee and the
racism that allowed it to happen comes up again later in our
book club in what I thought was a profound way, so I ended
up being very glad for many reasons that we spent the
amount of time on this that we did.