Ancestral Antecedents of Illness: Opportunities for Assessment and Amelioration
Joseph B. Martin
Edward R. and Anne G. Lefler Professor of Neurobiology, Emeritus
Harvard Medical School
Amish communities have long made important contributions to medical knowledge through their participation in genetic research. Dr. Joseph Martin, whose research was instrumental in identifying the genetic underpinning of Huntington's disease and other disorders, will describe today’s rapidly developing landscape of medical genetics, focusing on the power of genetics to identify inherited disorders and the promise of new treatments. Remarkable breakthroughs are changing the way we can imagine the future of health care, though they also raise important questions for researchers, doctors, and patients.
Martin received his medical degree from the University of Alberta, Edmonton, in 1963, completed a residency in neurology in 1966 and fellowship in neuropathology at Case Western Reserve University in 1967, and received his PhD in anatomy from the University of Rochester in 1971. Martin began his career in academic medicine at McGill University in Montreal, where he later became chair of the Department of Neurology and Neurosurgery. In 1978, he joined the faculty of Harvard Medical School as the Bullard Professor of Neurology and chief of the neurology service at the Massachusetts General Hospital. In 1984, he was appointed the Julieanne Dorn Professor of Neurology at Harvard. in 1989, Martin began his tenure as dean of the School of Medicine at the University of California, San Francisco, and he went on to serve as chancellor of UCSF for four years. He returned to Harvard in 1997, serving as dean of the medical school until 2007 and then as Lefler Professor of Neurobiology until his retirement in 2016. He is the author or coauthor of more than 300 scientific articles and reviews, and a former editor of Harrison's Principles of Internal Medicine, a widely used medical textbook. He has received numerous national and international distinctions throughout his career.
The Amish as Health Care Consumers
Although the Plain people are a very traditional population, as health care consumers they exhibit traits that represent advanced forms of a number of industry trends. As cash purchasers, they have an extreme amount of “skin in the game” and constitute an important cash market, which is geographically concentrated and in some areas quite sizable. The Plain community is highly consumerist—they shop for care, negotiate directly with providers, and will engage in medical tourism. Further, the Plain community receives extremely transparent information about health care service prices, the very type of information that providers generally take great pains not to release. This presentation will assess the unique role of the Plain community as health care consumers and discuss how they impact providers and health care markets, and what broader lessons we can draw for the industry as a whole.
Katherine Hempstead is a senior policy adviser at the Robert Wood Johnson Foundation, where she works on health care issues, mostly related to coverage, cost, and access. She previously ran a data center in New Jersey state government, where she also worked in the office of the attorney general. In addition, she was formerly on the faculty at the Rutgers Center for State Health Policy, where she is still a visitor. Hempstead has a PhD in demography and history from the University of Pennsylvania.
Many people are surprised to see photos of a horse and buggy parked outside of a groundbreaking medical clinic operating on the forefront of today's genomic revolution. To neighbors and locals around Lancaster County, this scene may not seem so jarring. Those neighbors know that the same team will be parked later outside of a local chiropractor or in the unmarked driveway of a popular herbalist. Amish in the Lancaster area interact with medicine using a unique pluralistic healthcare system, and utilizing this approach to the body results in a constant calculus around which kind of medicine may be the most suitable. This talk will look at this medical decision-making and the necessary negotiations around various technologies inherent in making these kinds of healthcare choices. Indeed, normative health practices and the suitability of health technologies are intensely impacted by the cultural practices inside and between church districts. Shining a light on the interactions between Amish community members and the various healthcare outlets they employ can illuminate new lessons about the ways Amish balance practices that seem so contradictory to outsiders.
Martha King is a teaching assistant professor in the anthropology department at the University of North Carolina, Chapel Hill. A scholar and teacher working on the intersections of belief systems, expressive culture, rural communities, healthcare, and the body, King holds an MA in folklore and a PhD in anthropology from UNC Chapel Hill. Her current research considers the bodily care employed by the Amish and their relationships with biomedicine. King has also worked in areas including representation in ethnographic research, social issues of returning genetic data in sick populations, the production of knowledge in medical genetics, and rural folk practices in the American South.
Understanding the Why: Engaging Amish and Plain Communities in Addressing Health Disparities
A common approach to addressing health disparities in any community begins with first identifying health issues (the what) and moving to addressing the disparities noted (the how). Often, the move from “what” to “how” leaves out the critical question of why? Why do we see health disparities in certain groups? The answer to that question lies within the community itself. Over the past 20 years, the community-led group Project Hoffnung (“hope”) has identified the burden of breast cancer in Amish communities and developed a multi-state initiative aimed at empowering communities with the tools they need to take charge of their health. Through two decades of coalition-building in rural communities, a model will be discussed that lays the groundwork for effective community engagement in Amish and Plain communities in addressing health disparities that puts the communities center stage.
Melissa Thomas is an assistant professor at Ohio University Heritage College of Osteopathic Medicine. She has worked on addressing health disparities through community-engaged research and outreach models for over 20 years, with a specific emphasis in rural and Appalachia Ohio. As founding director of the nonprofit Center for Appalachia Research in Cancer Education (CARE), Thomas has served as principal investigator on a number of research studies aimed at reducing the burden of cancer through culturally-competent health education programs. She holds an MS in administration from Central Michigan University and an MSPH and PhD in public health from Walden University.