20
Feb2013

by David Perlman, PhD, President & Founder of E4-Eclipse Ethics Education Enterprises, LLC

I borrowed the title of this blog post from Nancy Berlinger, PhD, at the Hastings Center. Every spring, before the summer season, she writes a post for the Hastings Center Bioethics Forum about works of fiction that tackle ethical issues in research and medicine.

Bioethics as entertainment is nothing new. My personal Top 10 List of films, books, and television programs show research gone awry is:

  1. Coma
  2. Dark Angel 
  3. I Am Legend
  4. The White Plague
  5. Limitless
  6. The Strange Case of Dr. Jekyll and Mr. Hyde
  7. Frankenstein
  8. Jurassic Park
  9. The Fly
  10. The Hulk
These pieces of fiction are terrific for reflecting on research ethics. Fiction has an allure that fact lacks. With fiction, we can do the sorts of (thought) experiments that no institutional review board (IRB) in their right mind would ever approve. Stories resonate with our moral sensibilities. As I have written elsewhere, “stories are important tools for synthesizing universal truths from particular glimpses into our shared human condition.”

When I read a work of fiction that attempts to address ethical issues, I find myself using my moral imagination to play out the “what if” scenarios that confront the characters. Perhaps this is because, as a child of the 1970s, one of my first fiction reading experiences included the terrific Choose Your Own Adventure books. In this series of books, the reader becomes the protagonist and must confront moral choices. Some choices end badly; some don’t. Reflection on the likely consequences of one’s choices is at the heart of these books. In this way, these books, more so than straightforward works of fiction, help shape and sharpen one’s moral imagination and help to inculcate the habit of moral reflection. For this reason (and as a philosopher who studied the Ancient Greeks), I know Aristotle would have been pleased with the Choose Your Own Adventure series.

As an ethicist, I have often wondered why there aren’t more books about ethics that use this interactive format. So, I decided to write my own. Here’s a blurb I prepared to introduce people to the book, which takes place in the not-so-distant future:
My recipe for a creepy futuristic sci-fi novel: Take one part Robin Cook’s & Michael Crichton’s Coma, mix in one part Jessica Alba in Dark Angel. Stir in an organ transplant shortage, a devious surgeon, a nefarious body snatcher, and families of vegetative patients who would donate a kidney in exchange for perpetual life support. Whisk in the ability to choose your own adventure throughout and what do you get? A perfect “organ farm.” 
My novel, The Organ Farm, tackles issues of medical experimentation with patients in permanent vegetative state (PVS). The surgeon in the book trades the use of the patients’ bodies (as organ and tissue donors, especially ova for fertility experiments, which are fertilized then implanted back into the female PVS patients to gestate the fetuses) in exchange for continued medical maintenance of the patients. The description from Amazon.com says it best:
The year is 2022, and bioethics has come full circle. Learn how guerilla bioethicist, Maria Vasquez, infiltrates the medical tourist transplantation operation of Dr. Wallace Jefferson and what happens when she discovers that Jefferson's illegal operating room in former US base Guantanamo Bay has become a new base of operations for Dr. Zoltan Zaros' stateside fertility clinic Pregnancy Viability Systems, Inc.
I invite members of the PRIM&R community to check out The Organ Farm and leave a comment with your own Top 10 “Beach Blanket Bioethics” List of the books and films you would watch or read when on vacation and why.

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One thought on “Beach Blanket Bioethics

  1. David Perlman

    I posted the following at the IRB Forum but thought I would cross-post here to extend the conversation in my guest blog post.

    Using Fiction for Education in Research Ethics

    Hello, IRB Forum colleagues.

    Over at PRIM&R’s Ampersand blog, I was a guest blogger about the topic of using interactive technologies to educate people about research ethics. By now, I’m sure people have seen The Lab that ORI put out. Not many organizations would be able to afford this level of sophistication in its educational offerings. To my mind, it represents the flagship of interactive technology for education.

    My blog post was about using more modest but also more accessible means to educate – films, works of (science) fiction, classics from literature, etc. My concern in this guest post was about educating the public about research ethics using these tools (not something many of us think about while we are immersed in our daily grind to protect subjects and promote integrity in science). However, as I was writing the blog post I was also wondering whether folks use these sources with success to educate investigators at their institutions.

    For instance, I know that I like to use a clip from Miss Evers’ Boys to illustrate the idea behind the regulatory (and ethical) requirement to use language understandable by subjects for informed consent. The clip first shows the doctor using complex medical-ese to describe syphilis and why it’s important to test for its presence. The men who are gathered scratch their heads and are silent. Then Nurse Evers uses the local vernacular (and I’m a Southerner so I particular love this part) to describe the same thing. After she’s done translating, the men nod their heads and voice agreement or understanding. I even have a slide where I show the readability statistics for the doctor and the nurses’ dialogue. It’s more revealing than anything in my lecture can be to illustrate the importance of this particular requirement. (By the way, I’m happy to share the clip and/or slides to those interested, but obviously can’t post the clip here for copyright reasons.)

    I encourage you to read the guest blog post and comment here or there about your successes using film clips, works of literature or (science) fiction in teaching complex ethical and regulatory concepts to investigators or the public. Warning: the guest blog also has some shameless self-promotion about my new choose-your-own-adventure novel to educate the public about issues in research ethics. I’ve found using this format very engaging for instruction. Feel free to comment on that topic, too.

    I look forward to responses.

    Reply