The Longest Way Round Is the Shortest Way Home
James E. Bowman, MD, was a trailblazing African American physician-scientist, a pioneer in genetics and bioethics, and an inspiration to generations of minority students at the Pritzker School of Medicine. Writer Stephen Phillips spoke with Bowman's former colleagues, leaders whose lives he touched and his daughter Valerie Bowman Jarrett to report on the life and times of a "renaissance man."
It was a turbulent time. Social unrest and racial tension still simmered from the '60s, and a groundswell of activism was building around a serious blood disorder disproportionately affecting African Americans that would have a galvanizing effect on public health, from the bottom-up and the top-down.
In 1970, there was no treatment for sickle cell anemia, and knowledge of how to manage it was rudimentary. For patients, life expectancy was about 20 years. Roughly one in 500 African Americans was born with the condition, noted Virginia Commonwealth University medical professor Robert B. Scott in the Journal of the American Medical Association that October. Yet funding was a fraction of that for less prevalent disorders afflicting other groups, he wrote.
On the streets, the Black Panther Party took matters into its own hands, utilizing a newly available testing kit to mobilize screening in African American communities in Oakland, California, Chicago and elsewhere. "The Black Panther Party was putting charts about genetic disease and images of sickle cells in their newspaper that circulated in working-class communities," said Alondra Nelson, associate professor of sociology at Columbia University and author of "Body and Soul: The Black Panther Party and the Fight Against Medical Discrimination."
And the rumblings hadn't gone unnoticed in the White House. In February 1971, President Richard Nixon designated sickle cell anemia one of two "critical areas" for urgent investment under his proposed "National Health Strategy." The other was cancer.
The following year, he signed the National Sickle Cell Anemia Control Act, which authorized funding for screening, outreach and research to "reverse the record of neglect on this dread disease."
After decades of inaction, there was a headlong rush to tackle sickle cell anemia. And in the well-intentioned zeal to roll out mass testing and raise awareness, little attention was being paid to the accuracy of information disseminated to the public and the ethical implications of screening on the scale that was being embraced, said an outspoken professor of medicine and pathology from the University of Chicago.
James E. Bowman, MD, who died in September 2011 at 88, had just become the first tenured African American faculty member in medicine at the University.
In journal articles and meetings with lead players, Bowman excoriated the conflation of sickle cell anemia with the more common sickle cell trait (in which just one predisposing gene, as opposed to the two needed to produce the disease, is present, and the person is healthy) that was fanning public alarm. Recently named director of the University's laboratories, he assailed crude testing practices. To improve understanding of test results, he called for more education and counseling.
Clarice D. Reid, MD, former director of the National Heart, Lung, and Blood Institute's (NHLBI) Sickle Cell Disease Program, can still recall "the shock effect of his words.
"Jim spoke out. It wasn't just about doing the right thing; you had to do it the right way.
"Sickle cell was launched as a policy issue with no information about it in the general populace," Reid added. "Coming out of the civil rights movement, there was mistrust and unrest in the black community, and now there's this disease. There was widespread hysteria and confusion between sickle cell disease and sickle cell trait. On top of that, we're trying to mount a national program."
In Oakland, birthplace of the Panthers, Bertram H. Lubin, MD, now president and CEO of Children's Hospital & Research Center Oakland, was co-director of the Northern California Comprehensive Sickle Cell Center. "I thought, 'This is nice, a community group doing screening,'" he recounted. "But there was no informed consent, and people who tested positive didn't know if they had disease or trait. Jim was furious. He thought the intentions were good, but the implementation was outrageous. And he wasn't shy about saying so."
Bowman didn't confine his scrutiny to grassroots efforts. He castigated the government for propagating misinformation, and questioned the wisdom of aggressive screening programs underway in several states, cataloging instances of "genetic discrimination." These included hiking insurance premiums for people with sickle cell trait and dismissing black flight attendants with it, based on the misunderstanding they were unable to work at high altitude.
"At the time, we were seeking to screen the whole world," Reid said. "Jim reminded us there were potential ethical issues and the right not to know your genetic status."
It was a critique that had all the more impact for the person making it: a deeply engaged researcher committed to addressing the very issues they were raising.
From 1973 through 1984, Bowman presided over the Comprehensive Sickle Cell Center at the University, one of 10 such centers nationwide dedicated to patient care, research and education. Funded by the National Institutes of Health, a major educational publication from this center was "Sickle Cell Fundamentals," the 1975 book he wrote with colleague Eugene Goldwasser, PhD'50 (1922-2010), that became required reading by government-funded programs.
"That was the Bible," said Reid. An informational film, based on the book and co-produced by Bowman, Goldwasser and filmmaker Mallory Pearce, garnered CINE (Council on International Nontheatrical Events) Golden Eagle Awards.
Between 1972 and 1975, Bowman also served on six national committees concerned with sickle cell-related matters. He also helped organize a landmark sickle cell exhibition at the Museum of Science and Industry in Chicago.
While there remains much to do, today sickle cell patients can live to 50 and older, thanks to improved knowledge of the condition and how to manage it.
For all the contentiousness and missteps, Reid looks back on those early days fondly.
"It was a time of people moving together toward a common goal," she recalled. "And to achieve that goal, you had to get around all the misinformation and disinformation." Bowman, she said, was "the renaissance man, the social conscience . . . and bridge between the science, medicine and ethics."
His contributions reverberated beyond sickle cell.
Olufunmilayo Olopade, MD, FACP, professor of medicine and human genetics, and director of the University of Chicago Medicine's Cancer Risk Clinic, credits Bowman with "informing" her advocacy for patient protection protocols adopted in hereditary cancer screening.
And in the heady early days of genomics in the mid-1990s, Bowman, by then a senior scholar at the University of Chicago's MacLean Center for Clinical Medical Ethics, was recruited to the Ethical, Legal and Social Issues Working Group of the Human Genome Project. Amid "reports of a gene for this or that condition," the air was thick with "genetic determinism," recalled chair Troy Duster, PhD, professor of sociology and bioethics at New York University. "Jim was the most vociferous voice. I used to tell my social science colleagues that on bioethics issues he was a better social scientist than some of them, because they didn't know a lot about the scientific aspects of disease, and tended to rely on published literature or physician colleagues. Jim understood the medical part, but was also sophisticated about the social and political underpinnings of medical decisions."
Such insights were grounded in Bowman's experience as an early geneticist confronting the ethical quandaries of genetic testing before the emergence of bioethics as a stand-alone discipline, and as an African American physician-scientist confronting prejudice in segregation-era America.
The eldest of five, Bowman was born in then-segregated Washington, D.C., in 1923, and attended storied Dunbar High School. Bucking his father's wish that he follow him into dentistry, Bowman enrolled at Howard University College of Medicine. He completed his studies in three years (as part of an Army-sponsored expedited curriculum) in 1946, earning induction into the Alpha Omega Alpha Honor Medical Society as a leading member of his graduating class. Precluded by segregation from joining the army as an officer, he completed an internship at Howard's Freedmen's Hospital before moving to Chicago, where in 1947 he secured a residency in pathology at St. Luke's Hospital (now part of Rush University Medical Center). Bowman was the first black resident and made an immediate impression. In a 2006 interview for the UCLA-Johns Hopkins Oral History of Human Genetics Project, he recalled a friend's response on being told about the residency. "They said, 'But you know you have to go in through the back door…' Well I said, 'That's absolute nonsense. If I'm a resident …, I'm going to walk through the front door.' So the first day… I walked in the front door... All of a sudden, the Negro maids and janitors looked at me and stared at me and followed me down the hall… The next day, I walked in the front door, and there was a crowd of Negro janitors and maids… waiting to go in… with me. So I integrated the front door of St. Luke's Hospital!"
After the residency, Bowman became pathology chief at Provident Hospital until 1953 when, amid the Korean War, he was drafted, opting to join the Army's Medical Nutrition Laboratory in Denver, Colorado, as pathology chief. He'd recently married Barbara Taylor (daughter of the first African American Chicago Housing Authority chief, Robert Rochon Taylor), who had completed a master's degree in education at the University of Chicago. When the couple moved to Denver, Barbara taught at Colorado Women's College.
When his service ended in 1955, neither he nor Barbara could stomach "anything that smacked of segregation," he recounted in the oral history. "We… said, '… Why don't we find a position overseas…?'" They decamped to Nemazee Hospital in Shiraz, Iran, where Bowman became chair of pathology. Barbara taught preschool and lectured in psychology and anthropology at the hospital-affiliated medical school.
"It completely changed the trajectory of his career," said his daughter, Valerie Bowman Jarrett, a senior advisor to President Barack Obama and chair of the White House Council on Women and Girls.
From this unlikely setting, Bowman bootstrapped himself into the forefront of the emerging field of genetics.
It all began with a fateful encounter with a gravely ill little girl.
Miraculously, following a blood transfusion, the child recovered. Bowman and his colleagues were mystified, he recalled in the 2006 interview. But a visit by Bowman to a market where he spotted fava beans provided the breakthrough. They were dealing with favism, a genetic condition in which consuming fava beans triggers a dangerous anemic reaction.
Bowman led expeditions to collect blood samples from among Iran's ethnic groups to understand susceptibility to favism across different populations. The fieldwork offered a fascinating glimpse into different cultures, the genetic footprints of their movement and the evolutionary dynamics shaping genetics.
Bowman immersed himself in the literature. "I taught myself," he said in the oral history. "It was partly biochemical genetics, anthropology, history… It was wonderful."
He struck up correspondences with researchers worldwide, including Alf Alving, MD, who was at the University of Chicago, where researchers had linked the same genetic mutation involved in favism to a potentially fatal reaction to the antimalarial primaquine. Alving invited Bowman to look him up should he return to America.
It was a formative time on the personal front, too, said Jarrett, born in Iran in 1956. "It strengthened my parents' relationship because they were so far from home and had to rely on each other. They also made lifelong friends they treasured deeply."
In 1960, they left Iran for the University of London, where Bowman had won a fellowship at the Galton Institute, a pioneering training ground for geneticists. Here, he would finally "learn the genetics that I'd been reading about," he said in the 2006 interview.
Returning to America in 1961, he took up Alving's offer. The calm but forthright manner that students and colleagues would come to know was on display in that initial conversation.
"[Alving] said, 'Dr. Bowman, I have a paper here I want you to read… What do you think of it?'" Bowman recalled in the 2006 interview. "I looked at the paper and I saw that their statistics were all wrong, and the conclusion… I called him up and I said, 'Your paper is wrong.' He said, 'What?'… And I went back and explained why it was wrong."
Bowman subsequently was offered a dual appointment as assistant professor of medicine and pathology, and director of the University's blood bank.
"A new era of genetic enlightenment occurred in the 1950s," said Alvin Tarlov, MD'56, former University of Chicago chair of medicine. "Jim was the expert on the clinical meaning of genetic disorders that affected red blood cells."
Bowman's field studies in population genetics took him to Mexico, Ghana, Nigeria, Ethiopia and Uganda. From 1959 to 1967, he published eight papers in Nature, six as lead author. A summation of much of his research, "Genetic Variation and Disorders in Peoples of African Origin," came out in 1990 and was co-written with Robert F. Murray, Jr., now-retired chairman of the Department of Genetics and Human Genetics at Howard.
But Bowman was never too busy to extend a helping hand to students.
From 1986 to 1990, this mentoring was done in his capacity as Pritzker's assistant dean of students for minority affairs. "It was supposed to be a 20 percent commitment, but some days it took 100 percent of the time. He didn't compartmentalize," recalled colleague Rosita Ragin, now assistant dean for multicultural and student affairs.
"He'd had a tough time himself and was bound and determined to make it easier for the next generation," said Jarrett. "His office door was always open."
That door happened to be next to Pritzker's main lecture hall. And into it streamed a procession of students, many now leaders at the University.
William A. McDade, MD'90, PhD'88, associate professor of anesthesiology and critical care and the University's deputy provost for research and minority issues, visited Room P117 as a precocious 20-year-old graduate student, clutching "Research in Progress," a catalog of research opportunities for the Biological Sciences Division. McDade, who was nearing the end of his first year in the Medical Scientist Training Program, emerged following a counseling session with a project selected that would set him on the path toward becoming a sickle cell expert himself.
For Anita Blanchard, MD'90, associate professor of obstetrics-gynecology, the first member of her family to attend medical school, Bowman was a "lifeline."
"He became like a second father," she said. "My father was wonderful, but he couldn't help with navigating medical school and a career as a physician. Dr. Bowman stepped in and did that."
For Eric Whitaker, MD'93, MPH, executive vice president for strategic affiliations and associate dean for community-based research, Bowman "was the steady force amid the tumultuous times of becoming a doctor."
He was a taskmaster too. "I was active in a lot of different organizations and ended up becoming national president of one of the largest medical students' organizations," Whitaker said. "His take was you're here to become a doctor; there's no such thing as an almost doctor."
Jarrett recalled this side of her father from their chess games. "He was a very good player and would play me totally fair. It took me a long time to beat him, but when I finally did, I felt a great sense of accomplishment."
She remembers a home in which public service was paramount (Barbara Bowman cofounded the Erikson Institute, a pioneer in early education), and expansive discussions reflected her father's "insatiable intellectual curiosity."
"The conversation around our dining room table was always a spirited conversation. It wasn't for the faint-hearted; you had to come prepared to defend your positions."
Bowman doted on Barbara, Valerie and granddaughter Laura Jarrett (a 2010 Harvard Law School graduate), whom he used to pick up daily from the University of Chicago Laboratory Schools.
"He made us his highest priority, no matter what else was going on in his life," Jarrett said.
Many mentees were drawn into the close-knit Bowman household in Hyde Park and its extended social circle.
"Jim was not a parochial thinker," said Raphael C. Lee, MD, ScD, the Paul S. and Allene T. Russell Professor of Surgery, and professor of medicine and of organismal biology and anatomy. "He was very knowledgeable and thoughtful about extant matters of human health and rights around the world.
"The Bowman house," Lee said, "was often a social gathering place for makers of political change in Chicago, including the Obamas, and that goes back decades."
Bowman's wider influence is exemplified by his relationship with John W. Rogers Jr., CEO of Ariel Investments, the nation's largest minority-owned money management firm.
Rogers was a 22-year-old trainee stockbroker at William Blair & Company when the Bowmans invested with him. They also backed Rogers when he came to them, two years later, with a "crazy idea" to strike out on his own. "Not only was I young, there had never been an African American mutual fund in Chicago," recalled Rogers. "But they said yes. I remember telling them what I was going to try to do. They couldn't have been more supportive. It meant a lot; it was a stamp of approval when I desperately needed it."
Bowman joined Ariel's board, assiduously attending meetings for 25 years. He was a "moral compass," said Rogers. "He was committed to doing things right; there were going to be no questions."
"My father used to joke any time I'd call him with an ethical dilemma: 'If you need to pick up the phone and ask me, you know the answer is no,'" recalled Jarrett.
In his final years, Bowman derived immense satisfaction from Jarrett's success.
"He was very proud," Whitaker said. "Watching Barack Obama's rise with the help of his daughter was the capstone to a beautiful life."
In 2008, Bowman's health began to falter. He was diagnosed with cancer. He battled it gamely, but finally succumbed on September 28, 2011.
"I never met anyone with such boundless enthusiasm and deep-seated commitment," Ragin said. "Yet he always seemed so modulated and paced."
The spirit was intact to the end, she said. In the final days, Ragin visited his bedside. "I took his hand, and he grasped it firmly and raised it high. I said, 'I know, Jimmy, we have a lot left to do. I'm on it.' Without a word, he made the effort, exhorting me."
The Bowman Society
One of James E. Bowman's joys in his final years was the Bowman Society, founded in his honor in 2005 by William A. McDade, MD'90, PhD'88, associate professor of anesthesiology and critical care and deputy provost for research and minority issues at the University, as a resource for minority faculty and students. The group has blossomed, hosting a roster of distinguished speakers. A fixture at each meeting until his death, despite ill health, was Bowman himself, ever ready with a question or remark. "He'd always say hello, ask me about my research and encourage me," said Shamsideen Musa, MS4, a regular attendee.
"He didn't want it to be something that was done for a short amount of time and then faded," said Melissa Gilliam, MD, MPH, professor of obstetrics-gynecology and pediatrics, and associate dean for diversity and inclusion. "He wanted it established as something that creates long-term opportunities."