genomics & society

Genetic Medicine with the Amish: not so plain and simple

Posted by martha k on July 9, 2012

In February, the journal Nature published a piece by science journalist Trisha Gura outlining the history and work of the Clinic for Special Children (CSC) in Strasburg, PA. The clinic and its physicians have been profiled a number of times in the media, including a piece on Dr. Morton published in Smithsonian Magazine that eventually led me to their door. My research among the Amish of Lancaster County investigates how their religious community and group identity impact the way Amish utilize healthcare, value varied medical approaches, appropriate technology, and understand the individual and social body. Like previous profiles, Gura’s article was well researched and touched on a number of the fascinating aspects of clinical care at CSC—including their tactic of stepping over the systemic partitions between research and clinical care in order to more effectively treat their patients. This team has shaped their practice of medicine to rise and meet their patient population, and their use of genomics has resulted in diagnoses and treatments becoming less costly, easier to comply with, and more culturally perceptive.

Becoming fluent in the subtleties of Anabaptist life in the Lancaster area allows the staff and physicians at CSC to practice real genomic medicine on the ground. When a new family with the surname Stoltzfus comes through the door just after a family with the surname Martin, the physicians are armed with sets of knowledge based on that information alone before ever setting foot in those two exam rooms—these surnames not only indicate different church affiliations, they represent different founding populations and resulting likelihoods of distinctive genetic issues. Type of dress, style of head covering, and mode of transportation to the clinic are among the cultural cues that CSC’s doctors and staff know how to read. And this reading serves a more comprehensive purpose than mere “cultural competence,” or even building doctor-patient rapport; this reading instantly informs their differential diagnostic procedures.

While generally well done, much journalistic coverage of CSC lacks the space and depth needed to account for the social and cultural forces that impact relationships between CSC and the Plain communities it serves.  My current project focuses on Lancaster Amish use of biomedical approaches, particularly via their relationship with CSC. Newborn screenings, molecular diagnoses, and pediatric treatments available at CSC involve ongoing encounters between biomedical forms of knowledge and Amish worldviews. For the Lancaster Amish, approaches to these  and other medical issues are dictated by participation in a bounded community. In other words, the focus on a church district (what we might think of as a congregation) that forms a tightly united social body remains a primary tenant of Amish spirituality and a core value in the cultural world of the Amish. It is a driving force behind social practices involving dress, use of technology, education, language, mutual aid, and types of interaction with the non-Amish world around them. Many outsiders think that Amish praxis has a lot to do with living in the past, rejecting the modern, or being simple for simple’s sake, but the reality is that Amish spirituality dictates that cultural standards unite the faithful and form a protective boundary around the community. This, of course, is not to suggest that they do not face spiritual and personal difficulty. Many of the Amish families I worked with at the Clinic for Special Children face profound disabilities and can tell us a great deal about personal struggle. Even with that struggle, it is the church district—not personal need—that motivates many decisions in Amish life.

Cost of care provides one example of how the interchange between self-determination and community will impacts Amish use of biomedical services. Due in part to community reliance, the Amish carry no health insurance; they participate in no federal or state aid programs like Medicare or CHIP. This greatly decreases the use of biomedical services—particularly for preventative care. Amish consultants admit to me frequently that the cost of cash-pay health care drives them away from visiting doctors’ offices. The charges seem incongruous to the results, and most of that “extra money” is seen as lining the pockets of physicians. Existing as a self-supporting group requires practicing constant mutual aid within the church as part of their communal lifeway and this includes paying the medical bills of church members. In many Lancaster districts, this processes is relatively formalized with a majority of members in a district regularly contributing to an aid account administered by volunteers. This works well for small procedures, one-time requests, and other relatively straightforward medical charges. But it begins to break down when bills become more costly and complex. If an immune-compromised child must be repeatedly hospitalized or becomes a candidate for a bone marrow transplant, many Amish families amass charges exponentially larger than their yearly income and often beyond the limits their church district can shoulder. The recommendation of the physician and the desires of the parents may be overridden by a decision of the church. There are cases where families have declined needed and potentially curative care for a child with a bleak prognosis because their district could not continue paying medical bills.

Even families under care at CSC have experienced these kinds of episodes. But the clinic remains acutely aware of their need to address the social body of their patient population as well as the individual bodies of the children playing in the exam rooms. One small part of that is the constant attention to controlling the cost of care in ways large and small—from the lab being fully incorporated in the clinical setting, to a constant attention toward the natural history of disease on the local level, to advocating for patients with hospital billing departments. The deliberate integration of disease knowledge, genetic information, and community history has created a space where general pediatrics is thoroughly integrated with genetic science and the continuity of care not only reduces testing and treatment charges, it provides for a cumulative knowledge that is unavailable at tertiary and academic care centers.

CSC being a “model for personalized medicine,” as Gura suggests, is both right and hopeful. But the term itself belies their answer to the challenge; CSC has found success, both medical and cultural, by altering their gaze to see through the personal and project the deme back onto the medical problem at hand.  Placing primacy on the group, just as the Amish do spiritually and culturally, allows them to more effectively treat the individual. The Amish demonstrate a constant dynamic of acceptance and rejection of new technologies in many arenas. In Lancaster, their participation in genetic medicine and research is due in great part to a setting that understands patient autonomy does not apply in ways that are taught in medical school or enforced by HIPAA regulations. As the Lancaster Amish districts continue to shape their use of medical technology in light of the clinic’s presence, CSC manages to create a biomedical environment where this kind of cultural negotiation can occur.

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