When I was a graduate student, I enrolled in a medical ethics course, and one of the first things we discussed was the infamous Tuskegee syphilis study. This was a twentieth-century effort to study the effects of syphilis in African-American men and resulted in hundreds of people not receiving adequate treatment simply to understand late-stage manifestations of the disease. My professor challenged us to debate the principle of informed consent itself and argue if this was simply a case of racist attitudes undermining a well-meaning public health initiative. And while we listened to her discourse and wrote analytical papers, the thought on all our minds remained. Who cares what they wanted to do? Look what happened.
The Tuskegee syphilis study is remembered today not as a public health initiative to combat syphilis in affected populations, but rather, a racist piece of pseudoscience that resulted in hundreds of black men suffering at the hands of white researchers. Why? Just to see what would happen. What does intent mean if people suffer in the end?
It turns out, as Megan Giddings’s novel Lakewood shows us, so-called noble intent can be the scariest factor of all.
Lakewood draws upon not only the Tuskegee study, but also a long history of unfair experimentation on black and brown bodies for the sake of scientific advancement. The examples are countless, and the result has led to well-documented medical distrust in minority communities. In my own field, genetics, mandatory sickle cell screening led to insurance and employment discrimination. Again, no proper consent. It wasn’t until 1972 that laws were passed against mandated sickle cell screening. Megan Giddings takes the distrust of her community and amplifies it, creating something wholly new and modern.
The novel follows Lena Johnson, a college student that loses her beloved grandmother to cancer. This death uncovers the sheer extent of the family’s debt, and Lena, who also cares for her ill mother, is forced to leave college for stable employment. When the Great Lakes Shipping Company comes knocking, bringing with it high wages, a place to live, and full health insurance coverage, Lena can’t resist. She packs up her things and moves to the small town of Lakewood, Michigan. Except this isn’t a shipping company, and Lakewood is no ordinary town.
Lena is a subject in a research study of massive proportions. Her body and mind are raw materials in the hands of scientists and innovators. On her and other subjects they test dazzling new medications. Drops that change eye color, mood-changing pills, and other studies we never truly understand. She’s frequently assessed, physically and mentally, and never left alone. One of the first things she notices is that almost all her fellow participants are minorities, starkly contrasted against the white townspeople and white researchers. She feels the unease right away, but thinks of her mother and signs the non-disclosure agreement.
Giddings maintains a tight hold on us for much of the book. Her plainspoken yet detailed prose draws us close to Lena, allowing us to get to know Lena’s independent spirit and sharp observations. In a few haunting sentences, Giddings is able to pinpoint Lena’s motivations, and we understand that she’s not trapped in a prison of her own creation, but in a prison created by a paternalistic, bigoted society.
“The painkillers took over. Lena rambled about quitting, about pain, about fear, and what it was like to get fucking slapped, and how did she know the bone wasn’t broken. How was it legal to treat people like this. It wasn’t. It wasn’t…The doctor leaned over, still holding onto her cast. She whispered into Lena’s ear, “Before you talk like that to any of us again, think about your mother.”
Prose like this keeps us tightly wound, hanging on Gidding’s every word and Lena’s every move. We feel a paranoia unique to the digital age, censored searches and blocked websites, constantly being heard and watched. And eventually, when things spiral out of control and Giddings lets us go, we’re left reeling. Dizzy. We pick up some pieces but not all of them.
Lakewood brings us to the question of intent, and it’s this that’s kept science protected for so long in the public eye. Unethical studies often take years to surface in the news, often needing the fresh eyes of a new generation to cry foul. After all, these studies all exist in the name of progress. Curing disease, alleviating pain, bringing mankind forward each and every day. But so much of science occurs without basic human regard, and while the studies Giddings describes may not exist, the feelings of distrust, fear, and anxiety are all too real. These are fears researchers must address from the very beginning, from the onset of study design. Something as seemingly innocuous as financial incentive can quickly tumble into power imbalance, paternalism, desperation.
“He was listening for my breath, feeling the warmth of my skin, but it wasn’t about connection or an upwelling of feelings. He was reminding himself, This is a person.”
After all, as Giddings is well aware, as all victims of unjust experimentation are aware, that intent doesn’t matter at the expense of humanity.
By Megan Giddings
Published March 24, 2020