Laci M. Gerhart Barley

Home » Teaching at UH Manoa » Discussing medical ethics and compassion: the story of Henrietta Lacks

Discussing medical ethics and compassion: the story of Henrietta Lacks

Last week in my Biology 171 section, I decided to share a particularly difficult story with my students. We were nearing the end of the unit on cellular structure and function, which ends with the process of cellular division by mitosis. These chapters always focus quite a bit on cancer and the online homework for the textbook I use included a short ABC news segment about Henrietta Lacks.

The short version of the story is that Henrietta Lacks was treated for ovarian cancer at Johns Hopkins in 1951, during which cells from her tumor were taken without her knowledge or permission. Henrietta died about a year later, but her cells lived on as the first ‘immortal’ cell line (called HeLa) and exploded the opportunities for cellular research. HeLa cells were used to develop the polio vaccine, used to test effects of gravity and pressure for ocean and space exploration, put into nuclear bombs to test radiation effects, imaged and processed in countless ways to better understand cell division and genetic structure and their related diseases. Biomedical companies that sold HeLa made ample profit – you can buy a vial of HeLa online today for about $1,000. Henrietta’s descendants did not learn of this until the 1970s and have never been compensated, financially or otherwise. The long version of the story includes the multi-generational issues of distrust, anger, and indignation that arise not just from Henrietta’s story, but also from other atrocities like the Tuskegee syphilis experiments, and the various eugenics movements throughout the United States that lead to the forced sterilization of thousands of women (and men), mostly of color. Which leads to my reasoning for telling these stories to my students:

I tell this story in particular, and others like to it, to my students for three reasons.
1) We don’t often discuss them explicitly, but all the topics we cover in class have a story behind them of who discovered that knowledge, and when, and where, and how, and with whose help (knowing or otherwise). Classes in English or History or Anthropology will teach students to analyze how aspects of race, sex, and gender affect events and perspectives – that is present in science too, even though we rarely talk about it with students.

2) I think we (the scientific community as a whole) often do a poor job of acknowledging and apologizing for our major screw-ups. The ABC video the homework includes paints the story as sort of tragic, but leading to so much good that even Henrietta’s descendants are ok with it now. A more in depth discussion with her family (like those in the recent book The Immortal Life of Henrietta Lacks) shows a much more complex emotional response. Johns Hopkins sort of apologized to the Lacks family, but the statement focuses more on the fact that Henrietta’s doctors didn’t do anything technically illegal. It is frustrating to me how easy and how common it is to fall into the “but we didn’t know any better at the time” or “but look how much good came of it” sorts of arguments.

3) The majority of my students intend to go into the various medical careers. I want them to know these stories so that they understand why some people are distrustful of doctors and the medical industry. It is not paranoia. There is a very real history of exploitation and injustice and I hope that knowing these stories will help make my students more compassionate towards their future patients.

As I was sharing all of this with my students, I got quite emotional and openly cried in front of all 300 of them. It was a little embarrassing, but I was amazed at the positive responses I got from them. After class, about a dozen students came up to talk more about Henrietta (and give me a hug). I received emails from about another dozen or so students sharing their own personal connections to the story. One student had volunteered in a health clinic and ran into just the sorts of mistrust by her patients that I mentioned. Another has family in the Philippines who pressure her not to go into medicine because of similar stories that happen there.

Another student, Michael Martinelli, was inspired by Henrietta’s story and our class discussion and wrote the poem below, which he performed at the UH Mānoa Poetry Slam that was held last week. He invited me to the event, and I am glad I attended. Michael’s reading was honest and open, and I think his poem does an excellent job of incorporating the different perspectives, and acknowledging the wrongdoing while still keeping a focus on compassion. His poem is reproduced with permission below.

Recently in Biology, I learned some disturbing history,
Usually, I don’t like to focus, on negative aspects,
But occasionally, it’s quite necessary,
I learned about HeLa cells, the implications,
Henrietta Lacks, was her name,
She was mistreated, quite a shame.
Then Tuskegee, and John Hopkins,
Unconsented infections, forced sterilizations,
Untreated diseases, inhuman conditions,
Unbelievably, a complete disgrace,

If you haven’t heard, research it,
You wouldn’t believe me, if I relate.

What can we learn, from this story,
Mistrust and hate, in our society?

Let’s not travel, down that treacherous path,
Let’s together create, a new legacy,
Don’t turn a blind eye, don’t be afraid,
Passive inaction, condones misdeeds,
Allows excuses, for terrible behavior,
Allows horrendous, immorality.

Some might argue, “For scientific progress,
Look at all the help, that we’ve provided,
Saved a lot of lives, it’s justified.
If we hadn’t done, what we did,
We would be behind, half a century.”

That’s a slippery slope, where do you draw the line,
Lets use some common sense, and practicality,
If your that passionate, about your studies,

Test first on yourself, let us know how it goes.

Others might ask, “How do I make a difference?
I’m but one person, in a world full of injustice”.

However, don’t lose faith in our society,
Like a pebble in a pond, ripples travel far,
What seems miniscule, can make a world of difference,
Lets set an example, for our future,
Instill some morals and ethics, in our young,
Teach them about, our history,
Not just the good, but uncaring misdeeds.

I commend our teacher, Dr. Gerhart Barley,
In using her position, to spread some knowledge,
Lets learn from our mistakes, the world is ours,
For better or worse, it’s a conscious decision,
With that in mind, lets be a society,
Of unprecedented love, and soulful caring.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: