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Genetic Isolation: Studying the Hutterites
Genetic Isolation: Studying the Hutterites
Medicine on the Midway (cover story) | June 2008

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Sanjiv Shah, MD, glanced up from his arterial tonometer as his next subject approached. “Give me two marks on the paper, Doctor,” Donnny Waldner entreated as he took his seat. “No, I can’t cheat,” Shah replied, and returned to his work with the tonometer, a non-invasive method to measure the central coronary artery.

Shah’s was one of 11 stations spread like the face of a clock around the school gymnasium, and Donny would have to collect check marks on a form showing he had visited each of them before thee day’s end. Physicians and researchers would test his sense of smell, his vision, his lungs and, of course, his central coronary artery.

The battery of tests brought a range of medical care that isn’t always available to Donny and his neighbors in this remote corner of South Dakota. But that’s not the only reason Donny—and Shah and his medical colleagues—had gathered in the drafty gym this cold winter morning.

These tests would be more than a thorough checkup for the families in this farming community: They would add to over a half century of research that has amassed medical and genetic data on the Hutterites, a small religious community whose very isolation is helping scientists make discoveries that could affect the health of millions.

For one weekend in December, Carole Ober, PhD, a University of Chicago human geneticist, led a group of researchers from the University of Chicago, Northwestern University and Children’s Memorial Hospital to the Millbrook Colony of Hutterites for a
follow-up to a study she began a decade ago, funded by the National Heart Lung and Blood Institute (NHLBI).

In three days, physicians and researchers tested 130 of the 150 people who live in the colony’s rows of connected gray houses. The closest town is Mitchell, S.D., population 14,558. Roughly 15 minutes away by car, it lays claim to the world’s only Corn Palace, the Dakota Discovery Museum and the Enchanted World Doll Museum.

Millbrook is one of more than 30 colonies scattered across South Dakota that Ober has visited to collect data on asthma and fertility. Though the different research teams in Ober’s group study various aspects of the Hutterites’ health, all their findings will join a Hutterite gene bank that builds on almost 60 years of research.

Science meets Hutterites

The Hutterites’ relationship with scientific visitors goes back to the 1950s when biologist Arthur Steinberg from Case Western Reserve University first visited the colonies. He saw the isolated population as harboring excellent potential for genetic study. He knew that 1,265 of them had arrived in North America in 1874, and could trace their ancestry to fewer than 90 people.

The Hutterites could tell Steinberg virtually every detail of their ancestors’ trip overseas because those ancestors had kept meticulous records. They recorded them all in a single book, Das grosse Geschichtsbuch. All 612 pages of it survive today in a South Dakota colony not far from Millbrook.

Steinberg considered the Hutterites an ideal population for biological research. Such a small population limits genetic diversity and their communal lifestyle eliminates environmental variability.

“The Hutterite environment is so remarkably uniform,” Ober said, adding that its members eat the same food, share all goods and receive the same education.

So for two more decades, Steinberg continued his research, hand-writing family trees in dozens of notebooks.

After years of continuing Steinberg’s work, Ober now keeps those notebooks. She first encountered them in 1979, when she was looking for a post-doc position. Then at Northwestern, geneticist Alice Martin, MD, offered Ober a job in her lab studying genetics and population structure among the Hutterites. Having written her dissertation on the social structure and gene distribution of a Rhesus monkey population, Ober’s background in anthropology and genetics fit Martin’s needs perfectly. Ober traveled to the colonies later that year.

Ober took a position in obstetrics and gynecology at the University of Chicago in 1988. And now she organizes her own trips—roughly three a year to conduct these follow-up studies. Her group goes during the winter months, when the earth is gray and dry and the Hutterites aren’t so busy with farm duties.

On this trip, Shah took Donny Waldner’s blood pressure as he held very still, his back straight, and watched.

122 over 72.

“What happens if you get excited? Wouldn’t it be off? If somebody would be scared or something?” Donny asked.

“Yeah, that would make it higher,” Shah said.

A few seconds passed as white lines against a black background peaked and valleyed across Shah’s computer screen. Beeps rose occasionally from the carotid artery monitors. From behind partitions in the room’s back corner, there was the soft swoosh of blood flowing through hearts on the echocardiogram machines. Suddenly, Donny interrupted the lull with a forceful throat clear, and with his head slightly lowered, raised his eyes toward Shah.

“I did it on purpose, to see if it’s gonna go up,” he said, referring to the line dancing across the screen.

From behind his glasses, Shah returned Donny’s guilty glance. “OK, try to hold still. You want to get out of here, don’t you?”

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