LANCASTER, Pa. -On a recent morning they knocked on Mary Ann Stoltzfus' door, the research nurse and her Amish helper, just as they have on so many doors over the years. They didn't call ahead - most Amish don't have telephones. They tracked down Stoltzfus the old-fashioned way: They asked her mother-in-law for the address when they ran into her.
There were consent forms to sign, nosy medical questions to ask. The pair turned Stoltzfus' kitchen into a makeshift doctor's office, where nurse Theresa Roomet drew five vials of blood as the 40-year-old mother of six rested her elbow on the lacy tablecloth.
What began as one Maryland doctor's desire to learn more about the genetics of diabetes has, more than 15 years later, turned into a major medical enterprise with many millions of research dollars, findings published in major scientific journals and studies of diseases from obesity to osteoporosis in the Old Order Amish of Lancaster County.
In the name of cutting-edge genetic medicine, Dr. Alan Shuldiner of the University of Maryland slowly won the trust of the Amish community, a group leery of outsiders. He has persuaded more than 4,000 of them to be pricked, prodded and scanned, to eat low-salt diets or drink high-fat milkshakes.
"More times than not," Shuldiner said, "they're willing to participate in our research. We have become more and more demanding over time. And every time, the Amish have risen to the occasion."
The Old Order Amish of Lancaster County are considered ideal for genetic research because their gene pool is small, coming from a limited number of founders who arrived from Europe in the 18th century and have lived essentially the same lifestyle since.
Scientists like Shuldiner say the isolation of this 30,000-member community creates a powerful means for scientists to find the genes that lead to common diseases. With just 50 or so sets of chromosomes passed down from generation to generation for the past 14, the search for mutant genes that lead to disease can be simplified, and patterns that would be lost amid the genetic noise stand out.
His research doesn't yield information that is just of interest to the Amish. Shuldiner said he hopes his findings on heart disease, high blood pressure and the blood-thinner Plavix can be translated to the rest of the population - the "English," as the Amish call those not part of their community.
