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  • BIOETHICS FORUM ESSAY

Insights from Fictional Research Subjects

Mainstream research ethics rests on an incomplete foundation.  For the most part, human subjects regulations and guidelines reflect the views of professionals and others who have never been subjects themselves.  The knowledge that comes from personal experience is largely missing from research ethics decision-making.

Recognizing this problem, researchers and ethicists have turned to empirical investigations to learn more about what volunteers think about participating in research.  Some of them have written about their research experiences, and journalists and academics have relayed subjects’ stories, as well.  I’ve read a great deal of this material in the past few years, as I worked on a book about subjects’ research perceptions.  The material is highly informative, and I recommend it to anyone interested in research ethics.

But here I want to recommend another information source: fictional accounts of research participation.  Good research fiction is grounded in fact.  Anyone familiar with human research can see that writers are not creating their imaginary subjects from scratch.  And fiction is where ethicists can find rich and vivid descriptions of subjects’ inner lives.

Nearly 200 years ago, Mary Shelley paved the way in presenting experimentation from the subject’s point of view.  A large portion of Frankenstein is devoted to the monster’s side of the story.  In this part of the novel, the monster recounts his transformation from an innocent being in need of guidance and protection to a vengeful murderer.  The monster confronts Frankenstein with the results of his abandonment.  But when the monster begs his creator for help, Frankenstein refuses.  In Frankenstein, Shelley expresses more sympathy for the subject than for the scientist who ignores his research responsibilities.

More recent fiction offers literary takes on contemporary research practices.  For example, if you want to understand the informed consent process from a subject’s point of view, read or see Margaret Edson’s play Wit.  The script relays a cancer patient’s internal monologue during a physician-investigator’s description of the study he wants her to join.  As he talks about the study drug regimen, she thinks about his word choices and the cancer reading she needs to do.  She isn’t paying attention, but signs the consent form anyway.

Two other works of fiction portray consent discussions involving healthier subjects.  David Gilbert’s novel, The Normals, chronicles a phase 1 trial volunteer’s adventures in a drug company’s residential testing unit.  The novel touches on many research ethics topics, including the volunteer’s response to researchers’ study explanations.  He soon becomes impatient while listening to one such explanation, declaring, “I’m sick of being informed.  I’m just going to stay ignorant and do what you guys tell me to do.”   Robert Cohen’s novel, Inspired Sleep, presents the thoughts of a sleep study participant as the investigator describes his study.  While the investigator speaks, the participant is busy looking at the lab, thinking about her unattractive feet, and wondering why the investigator hasn’t called her by name.

These stories show why many subjects don’t learn much from consent discussions.  Subjects bring their own concerns and preoccupations to the research setting.  They aren’t necessarily in the right frame of mind to hear the dry and unfamiliar information that researchers present.  In unaccustomed surroundings, they pay more attention to what the room looks like and the researcher’s interpersonal skills than to the substantive message they are hearing.  Empirical studies reveal that there can be a wide gap between what researchers say and what subjects take in.  Narrowing that gap requires a better understanding of subjects’ mindsets, and fiction can help readers develop that understanding.

Modern fiction often questions the value of certain research objectives, too.  Although bioethicists tend to defend the scientific quest to enhance human life, creative writers are less enthusiastic about this. They aren’t convinced that we would be better off with drugs that allow us to avoid basic human challenges like facing mortality and dealing with difficult relationships.

Writers dubious of enhancement efforts include Don DeLillo, Gary Shteyngart, and George Saunders. In DeLillo’s classic novel, White Noise, a character is sorely disappointed after turning to an experimental drug to reduce her fear of death.  Shteyngart’s novel, Super Sad Love True Story, includes the tale of a biotech company’s failed attempt to develop life-extending interventions for “High Net Worth” individuals. In his short story, Escape from Spiderhead, Saunders skillfully ridicules and vilifies enhancement research conducted on prisoners who have “volunteered” for the assignment.

In each of these tales, the enhancement quest is depicted as morally suspect.  The authors contradict the feel-good narratives that enhancement enthusiasts deliver.  They also convey their concerns indirectly, avoiding the didacticism that characterizes many academic and ideological enhancement critiques.

Many other fictional works reveal the human dimensions of research participation.  Some examples are Ann Patchett’s State of Wonder, which examines drug studies involving indigenous people in the Amazon; Matthew Thomas’s We Are Not Ourselves, which considers a patient’s and surrogate’s responses to an Alzheimer’s drug study; and Daniel Keyes’s Flowers for Algernon, the story of an experimental subject with mental disabilities.

Fiction is a resource for ethicists to better understand the experience of being a research subject.  Scholars and research professionals should recognize that fiction can shed light on the research ethics issues they explore in their work.  Fiction ought to be incorporated into ethics education, too.  Creative writers present research in fresh and insightful ways, and ethicists can learn from them.

Rebecca Dresser, JD, is a professor of law at Washington University in St. Louis and a Hastings Center Fellow. Her most recent book is Silent Partners: Human Subjects and Research Ethics (Oxford University Press, 2016.)

 

Published on: January 11, 2017
Published in: Clinical Trials and Human Subjects Research, Hastings Bioethics Forum

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