Living the Issue

The relationship between career and family is often discussed in terms of conflict, especially when a parent faces a major challenge such as the severe illness of a child. But for biophysicist Adil Shamoo, a family health crisis became the catalyst for a new career.

Shamoo’s transformation illustrates the surprising turns that life can take, the role that passion can play in shaping goals, and how adversity can lead to inspiration. It also highlights Shamoo’s area of interest for the past 2 decades: the responsible conduct of research, a field that combines issues of research integrity and bioethics. His field, he says, provides opportunities for many other scientists to apply their valuable experience and expertise in work that offers not just intellectual challenge and moral purpose but also “a whole range” of possible jobs.

Transforming a career

A native of Iraq, Shamoo earned his bachelor’s degree in physics from the University of Baghdad, his master’s in physics from the University of Louisville in Kentucky, and in 1970, his Ph.D. in biophysics from the City University of New York. In 1971, he became an assistant professor at Mount Sinai School of Medicine in New York City. By 1979, he was a tenured full professor and chair of the department of biochemistry and molecular biology at the University of Maryland School of Medicine in Baltimore. He was a conventional bench scientist with a busy lab producing scores of research publications.

What happened? In the early 1980s, his curiosity was piqued when then-Representative Al Gore and Representative Ted Weiss held congressional hearings about scientific fraud–but it was decidedly a secondary interest. It would have remained so except for an unexpected family catastrophe. In 1986, his eldest son, a teenager, developed schizophrenia, widely considered the most severe and disabling of mental illnesses.

Shamoo threw himself into providing for the boy’s care and into “advocacy for more mental illness research” through the National Alliance for the Mentally Ill, an organization of family members of people with mental illness. Because of his research credentials, “they put me on the science review committee,” where he first heard about the case that would change the course of his life’s work.

In the late 1980s, Greg Allers was a student at Santa Monica College in California and on the dean’s list despite a diagnosis of schizophrenia. The medication that made this accomplishment possible also caused tardive dyskinesia, an irreversible and potentially serious movement disorder, so he and his parents allowed him to participate in research seeking a new medication. The study protocol abruptly “washed him out of his medication,” Shamoo says in the jargon of the field–which led to a deterioration of his condition from which he did not fully recover. Allers “fell apart, unable to continue his education or to live anything like” his previous life. Allers’s father tried “doggedly for … more than a year … to get them to put him back on medication,” but failed, Shamoo says. NAMI asked Shamoo to look into the case to see whether the research was conducted properly.

“The research had some legitimacy,” Shamoo says. “At the time I didn’t know it, and it took me literally 3 years to come to my conclusion,” but the approach the researchers took “was not really ethical. The relapse rate in sudden washout–I learned all that years later–is 40% to 60%. Tapering it off would be about 15%,” Shamoo says. “Also, they did the experiment as outpatient, which makes no sense,” because that deprives vulnerable patients of needed supervision and support.

His own son was never a research subject, but Shamoo had an intimate understanding of the issues involved in schizophrenia. “Not only do I understand it, I live with it. I knew this was not appropriate.” At NAMI’s request, he agreed to “talk to the father, to read the literature, to understand the situation, and to do a report.” A serious interest in research integrity had grown out of what Shamoo had learned from the Gore and Weiss hearings. Already, he had “organized the first international conference on research integrity” and started Accountability in Research to examine issues. But the bench research of his lab remained his primary interest.

The Allers case ignited his passion and began his self-education in the field that became first a consuming interest and then a new career. “It took me 10 years to become very versed, [reading] many, many articles. I studied a great deal, read books and articles, attended workshops.” Educating himself in a new field did not strike him as unusual. “To me, having a Ph.D. and being a professor is a lifelong learning experience. The degree, to me, is to teach you how to teach yourself later on.”

He continued his lab work during this period, but it steadily “lost its zeal.” He published in basic-research journals until 1995, then closed his lab and definitively shifted his focus to the responsible conduct of research.

A field in need of scientists

These days, experiments resembling the schizophrenia study in which Allers participated “would never be approved,” Shamoo says. But the ethics of research with human subjects is “still a patchwork and needs more reform.” This need means opportunities for scientists with research experience to contribute to the progress of a very important field, Shamoo believes. Many people now working in bioethics have backgrounds in law or philosophy and lack the deep understanding and “realistic approach” that scientists bring to the issues. “You’re in the trenches. … You’ve lived the issues, … in my case, for a quarter of a century. You have a better feel than somebody who is just a Ph.D. in bioethics or philosophy studying [research]. … I write differently [from nonscientists], I think differently, and I’m an applied [ethics] researcher. I am not a philosopher.”

Shamoo’s tenured professorship provided a secure base for making his career change, but the field offers many employment opportunities for scientists with knowledge of bioethics or research integrity. “They could be in a university department of bioethics, … clinical trial offices, hospitals, in human-subject protection, in research integrity.”

People with “a real scientific background” can prepare for this work “in many different ways,” Shamoo says. One is to get a master’s degree in bioethics at one of the “many, many programs, even distant-learning programs.” Another route is a certificate program, such as one that Shamoo recently helped organize at Sarah Lawrence College in Bronxville, New York. In addition, “one can self-teach, [depending] on how independent they are,” or “do a postdoc in bioethics. You get a fellowship to basically convert yourself … and [work with] an established figure on a project. … By working on an area, in an apprenticeship program for a year or two, you learn [the field].”

Were it not for his son’s illness and the resulting encounter with the Allers case, Shamoo probably would not have switched fields, and his work at the bench probably would have lacked the urgency of his subsequent policy work. “I became much more passionate because I had a personal interest, and I knew the exploitation and harm.” But, he says, scientists need not experience a searing family catastrophe to join him in the significant and satisfying work on the responsible conduct of research.

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