Human Subject: An Investigational Memoir

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23. The Face Is Unfamiliar

“En effet, le désir ardent de la connaissance est l'unique mobile qui attire et soutient l'investigateur dans ses efforts; et c'est précisément cette connaissance qu'il saisit réellement et qui fuit cependant toujours devant lui, qui devient à la fois son seul tourment et son seul bonheur.”

It was the last week of the herpes study, and I was looking forward to being done with the whole human-subjects biz for good. Then my mother mentioned that she was taking a dietary supplement that was supposed to have anti-aging properties. Not usually one to fall for quackery, she explained that a reputable scientist she knew had discovered the compound and then founded the company. Still, I thought I should check it out.

A few decades ago I became aware of a rare disease that I call dementia famosa. It strikes people, usually of the male persuasion, who have achieved fame for their work in a particular field. The main symptom is a belief that they are now qualified to pontificate in another, sometimes related but often totally new, field. Because of their prestige (or notoriety), these people attract media attention and ardent followers. Examples include Noam Chomsky (from linguistics to politics), Larry Flynt (from pornography to politics), and Arnold Schwarzenegger (from bodybuilding to acting to governating).

The first dementia famosa victim that I identified was Linus Pauling, who was actually stricken twice with the disease. In 1954 he won a Nobel prize for his work in physical chemistry. Then he became a well-known anti-war activist whose campaign against nuclear testing earned him another Nobel, the Peace Prize, in 1962. His second attack occurred in the 1970s, when he began advocating megadoses of vitamin C to prevent colds. People were quick to embrace the Pauling prescription. After all, how could a two-time Nobel prize winner be wrong? Many people may not have realized that he had absolutely no training in biomedical science.

Unlike his prize-winning peace activism, the megavitamin crusade may have done more harm than good (except to the manufacturers of megavitamins). Pauling later expanded the alleged benefits of vitamin C to include cancer prevention, but no reputable studies have ever confirmed its efficacy for preventing either the common cold or cancer. In fact, some studies have suggested that vitamin C may be carcinogenic or otherwise harmful. But Pauling continued to promote megavitamin use until his death in 1994. Some people questioned his motives, citing a cozy relationship with the health-food and pharmaceutical industries, but to this day, millions of people still believe that you can ward off colds with massive doses of vitamin C.

Wondering if my mother’s acquaintance could be suffering from dementia famosa, I took a look at his company’s Web site. There was information about the supplement, plus biographies of all the members of the scientific advisory board. The company and product looked pretty legitimate to me, and a quick Internet search didn’t reveal any detractors. Then I saw these fateful words on the company’s Web site: “clinical trial . . . now under way.”

It was a trial of two doses of the supplement, compared to placebo, to assess the effects on learning and memory. The topic appealed to my fondness for symmetry: I could end the book the way I started it, with the test of a substance’s effects on my aging memory. The oxycodone study had paid better: $200 versus three months’ worth of the $40-a-month supplement. But I didn’t have to sit in a hospital room for two days or plunge my hand repeatedly into ice-cold water. And if the stuff really worked, my memory woes could be over. I immediately signed up to participate.

This was the first clinical trial I’d ever seen that was conducted entirely over the Internet. Well, I suppose they had to send the supplements by mail, but the informed consent, screening, and periodic testing were all done online. And even though the investigators were 3,000 miles away, they were using the commercial IRB in my state, which just goes to prove that these days you can be anywhere while being everywhere.

I made it through the initial “paperwork” just fine, but there was one item I’d never seen in any other study: “Describe in 20 words or less why you want to participate in the study.” I love a challenge, so I had fun with this one; I managed to cite both concern for my mother and my own curiosity, in complete sentences totaling exactly 20 words. I wondered why this information was relevant to the study and why no other researchers I’d encountered seemed to care about the motivation of their subjects.

Then there were some memory tests that were supposed to last 45 minutes. About 10 minutes into the series, the test I was taking hit a dead end: “file not found.” I wrote to the site’s tech support email address, but got no reply. Then I searched for an email address for the PI (what, me make a phone call?) and finally found one that looked current. I sent an email, and I waited.

The next day the study coordinator wrote to me. She said they were having technical difficulties and that she would let me know when I could resume the screening process. Two months later I still hadn’t heard from them.

The two memory tests that I had managed to finish gave radically different assessments of my capabilities. In the first test, a series of video clips appeared on the screen, each with a person introducing him/herself. “Hi, I’m Larry.” “Hi, I’m Gloria.” And so on, 14 times. Afterwards the people appeared again, saying nothing, and I had to type their names. I could only remember the people who had some item of clothing or nonfacial physical feature that I was able to associate with their name; I only got about five names right. On a second trial, with the same people, I got about seven right. But the second test was easy: A series of four sets of first and last names appeared on the screen, and I had to reconstruct them when given just the last name. Of course, both tests would have been more difficult for someone whose native language wasn’t English (the names “Laura” and “Smith” might have seemed alien). I wondered if such a person would be more likely to appear memory-impaired and therefore more eligible for the study.

One of my many self-diagnoses relates to my inability to remember what people look like. I can talk to someone for an hour and then not recognize the person five minutes later. I suspect that I have a mild form of prosopagnosia, or “face blindness,” an incurable condition in which people are unable to recognize faces. They compensate by focusing on such attributes as hair color and clothing, just as I did in the face-name matching exercise. For as long as I can remember, this problem has caused me embarrassment in both social and professional settings. One thing I liked about the library job I had foolishly abandoned was the fact that it wasn’t actually in a library: I only dealt with customers by phone and email, so the ability to recognize faces was never an issue.

Reminded of this affliction by my poor performance on the memory test, I searched at ClinicalTrials.gov for prosopagnosia studies, but found none. My first thought was that there must not be any active research in this area, but then I found the Web site for the Prosopagnosia Research Centers (http://www.faceblind.org), a cooperative effort between Harvard University and University College London. The site offered a series of three self-diagnostic tests (all IRB-approved, naturally) that involved viewing and remembering the following sets of items:

Each test required that I pick out the items I’d been shown, from a series of both seen and unseen items. On the names test I scored above average, and on the eyeglass test I was only slightly below average, but on the faces test I was in the 9th percentile. I still got about 70 percent correct, so I had to admit that my affliction was pretty mild.

Again I was struck by the Anglocentric bias in the test. How easy would it be for someone from Mongolia to remember the name Simon Fairchild? And then there was the fact that all the faces were lily-white. At least the researchers addressed that bias on the site, explaining that most of the people they test are Caucasian, but that they’re developing a series of Asian faces.


I had so eagerly anticipated the end of the herpes study that I was baffled at first by the sadness I felt on the morning of my last pill and swab. Analyzing this feeling, I realized that it had several causes:

  1. I’m incurably nostalgic, so I mourn the passing of even the most unpleasant episodes of my life.
  2. I could no longer look forward to being relieved of a weighty burden. In other words, I had enjoyed the aggravation and inconvenience because, to paraphrase a punchline, it would feel so good when I stopped.
  3. Unable to contribute on a daily basis to medical research, I felt that my life had little purpose.

I figured that I was stuck with No. 1 (the absurdity of indiscriminate regret) and No. 2 (the pathology of masochism), but there were ways to deal with the last issue. For one thing, I could get a job. So what if I’d never heard back from the company that interviewed me for two different positions? And so what if I had totally blown the pre-employment test given by another company? There were plenty of other opportunities, right?

At my last visit with Donna, she took my blood pressure (which had skyrocketed to 112/68), took some blood (to make sure I was still negative for HIV and HSV-1), weighed me (108!), and did a quick physical exam to make sure nothing had changed in 15 weeks (“Your labia haven’t fallen off,” she reassured me). She said that she would let me know when she had the results from the analysis of my 392 swabs. I didn’t expect that those results would be very informative, but it might be helpful to know if I had a propensity to shed more at certain times of the day.

Donna wrote me a prescription for a year’s worth of acyclovir, at the dose I’d been on before the study. It was never clear to me why, if 800 mg per day was considered effective at keeping the virus in check, the study medication had been given at three times that dose. But I guess that dose had only been proven effective at preventing recurrences, not at protecting partners.

Before I left, Donna once again thanked me for my stellar performance as a subject, calling me an “exemplary swabber.” Alluding to our conversation from months back, she offered to write me a letter of recommendation. I think she was only half kidding. On my way out the door, I told her—again—about the book I was writing. I assured her that my subjects were all strictly anonymous. She expressed interest in seeing the final product.

Later that evening I weighed my options for the future. I could continue competing for jobs that—assuming that I could ever get one—probably wouldn’t interest me for very long. That seemed unfair both to me, with my fragile ego, and to the employers who would be wasting their time on an incompetent and indecisive candidate.

The only other viable option, I had to admit, was to continue volunteering for research. After all, it wasn’t really the studies I was tired of so such much as the need to write about them. Now that I was tying up the loose ends in my narrative, the life of a guinea pig began to have more appeal. Given the number of studies that had rejected me, perhaps this wasn’t the most efficient way for me to contribute to society. But it sure as heck beat looking for real work.

Back at ClinicalTrials.gov, I saw once again that most of the studies had criteria that I didn’t meet. Surely, though, I could persuade the researchers to bend the rules for an exemplary, stellar subject like me. All I needed was a good letter of recommendation.


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