Human Subject: An Investigational Memoir

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Preface

When the author of a new nonfiction book gives a lecture or is interviewed, one of the first questions asked by the moderator or interviewer is almost invariably “How did you get interested in this topic?” My muttered response to this question is almost invariably “Who cares?” But the guest gives a polite answer, forcing the rest of us to learn about whatever childhood trauma or chance encounter piqued the author’s interest in the topic. If we’re patient, we may eventually get to learn about the actual content of the book.

Because I'm a vengeful person, I will now make you wait for the real story while I tell you why I wrote it. Yes, you can skip ahead if you prefer, but you might miss out on some information that could be crucial later in the book.

In the summer of 2006 I was an increasingly restless reference librarian. My job, like most in the civil service, was fairly secure, with decent pay and excellent benefits. I had grown weary, however, of feigning interest in library patrons’ questions, 90 percent of which fell into one of three categories: genealogical quests, car-repair conundrums, and attempts at hypochondriacal self-diagnosis. The other 10 percent of the requests I got came from people who just wanted “a good book to read.”

In the hope of at last finding my true calling, I started taking computer science courses. I asked my employer for a leave of absence to pursue my studies, and when the request was denied, I happily quit. As it turned out, I didn't have enough brains, guts, or whatever part of the anatomy is required to become a computer expert at the age of 52. But that was OK, I figured, because it was really just time for me to quit being a librarian. It was time to stop pretending that I cared about books.

Oh, I still liked books in theory, and I thought it was great that just anyone could walk into the public library and find reading material (not to mention the dual necessities of Internet porn and a clean restroom). But, having decided that life is really too short to read fiction, I hadn't read a novel in months. How could I advise library patrons as to which books they might enjoy? I rarely even bothered to read nonfiction anymore, because (1) I couldn’t stay focused on anything for very long, and (2) what was I saying? Oh yeah, the other reason was that I couldn’t retain what little information I managed to absorb; the essence of even the most fascinating books completely evaporated within hours of my finishing them.

Unable to get anything out of reading books, I felt I had no alternative but to start writing them. A full-time job, I rationalized, would just distract me from the far more important task of writing. As it turned out, my timing in giving up a cushy job couldn't have been worse.

Most people desperately hang onto their jobs for the health insurance, but I figured that I could fall back on my husband's coverage. What I hadn't realized was that the insurance offered by his employer (for a not-so-modest fee) was lousy compared to the plan the library had bought for me. I also hadn't anticipated that my husband and I would divorce, leaving me with no insurance at all. Nor had I realized that my former boss would be so annoyed with me for quitting that she would never recommend me for another job.  

A writer with no health insurance and no prospects for steady employment has few options. The only one that made sense to me was to become a full-time participant in medical research and to write about the experience. Not only would I get free health screenings, an occasional modest stipend, and the chance to prove myself as a writer, but I could even get some of the drugs needed to control my various unmentionable diseases (to be mentioned later).

I must confess that my reasons for pursuing a career as a human subject weren't entirely selfish. Health professionals and patients rely on data obtained through clinical trials and other kinds of research to make informed decisions about health care. Someone (actually, thousands of someones) has to participate in those studies, so why not me?

After I had resolved to write this book, I discovered that there was already a huge  body of literature on the subject of human subjects, and a respectable fraction of it was being produced by the subjects themselves. The journal Guinea Pig Zero publishes (in print and at the Web site GuineaPigZero.com) true tales of people who make their living as healthy human subjects. GPZ also includes news, fiction, and art related to the business of renting out one's body for science.

The primary focus of GPZ founder-editor Robert Helms is the quest for economic justice for guinea pigs. I must say I was stunned to see how much money the professional pigs were making. I read about one study that paid $3,300. Granted, this study required the subjects to spend 23 days in confinement, but that's pretty decent compensation for less than a month's work. I wondered if I would ever find a study that paid that well.

Then I remembered that money wasn’t my primary motivation. Unlike the healthy people clamoring for higher wages and better working conditions, I believed that participating in medical research was a worthy activity in itself. 

As  the voice of the professional study subject, GPZ reflects a labor-versus-management attitude toward researchers., and the overall tone of the writers is generally adversarial and suspicious. While I also tend to react to the world with suspicion and skepticism, my purpose in launching this project was not to expose irregularities, but to document the unbiased experiences of one unemployed, underinsured guinea pig. I wanted to think of myself as an equal partner in the research process. About three months into my career as a test subject, I realized that this partnership was less symmetrical than I had first thought. Yes, the researchers were experimenting on me, but I was using them and their projects as the basis for my own research without even telling them. In short, they had become my unwitting human subjects.

And now a word about the structure of the book. Back in my reading days, I was frequently irritated by the stylistic quirks of authors. What most annoyed me was the hubris of some authors in assuming that the reader will follow them anywhere, even on detours of dozens of pages. Stories are abandoned midstream, to be taken up again only after a long interval of unrelated text. It irked me that the reader was expected to follow along, hungrily devouring every finely crafted, if completely irrelevant, crumb of creativity on the path to literary enlightenment. I, of course, never put up with that sort of treatment: I always skipped the intervening chapters so I could see what happened next in the story. Then, if necessary, I would go back and read the alternate chapters that contained a different story.

I wasn’t about to squander the chance to inflict similar frustration on my readers, so the narrative that follows includes many interruptions and detours. Chapters that are mainly about my personal experience as a research subject alternate with chapters that are mainly about some aspect of human-subjects research in general. This pattern gets a bit blurred toward the end, but together the chapters form a moderately well-organized collection of vaguely chronological thoughts and events. You’re free to skip whatever seems like an unwanted interruption, but, as with this preface, you may find that later parts of the narrative build on information contained in a part you skipped. Consider yourself warned.

Another literary conceit that annoyed me when I was younger was the habit many authors had of liberally peppering their work with quotations in languages I could not read. Over the decades I’ve acquired some rudimentary knowledge of a few languages besides English, while at the same time authors have stopped assuming that readers learned Latin or any other language in school (some authors seem to have skipped even the classes in their native language). So these days incomprehensible quotations are rarely an issue for me. Still, in an effort to frustrate the non-francophone masses, I’ve begun each chapter with a marginally relevant excerpt en français from Claude Bernard’s influential 1865 text, Introduction à l'étude de la médecine expérimentale. OK, I confess: I would have used the English translation, but it isn’t in the public domain. I would have had to obtain permission to use excerpts from it, and besides, why undergo the tedium of typing long passages when I can just copy and paste them off the Web? Bonne chance, everyone.

As with any study involving personally identifiable information, I have respected the privacy of the people and institutions I encountered in my research. The stories are true, but the names have been changed to protect me from lawsuits.

Finally, for those of you who prefer not to read a book without first reading a review of it, I have helpfully included two critiques, one positive and one negative, each written by a well-qualified reviewer. Read those first for an impartial preview of what you’re in for.


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