Sutcliffe: Lancaster Amish Likely to Benefit from Outreach about Genetic Screening

By Purnell T. Cropper | October 22, 2010

“Through a founder effect, one in eight Lancaster County Amish carries a genetic mutation for Familial Defective Apolipoprotein B-100, R3527Q, that is rare in the general population. Affected individuals are at increased risk for high LDL cholesterol levels and cardiovascular disease. These individuals are likely to benefit from early, aggressive treatment,” according to a poster presentation abstract by Erin Sutcliffe, Arcadia Univeristy Genetic Counseling student, at the National Society of GeneticCounselors’ (NSGC). “Attitudes Toward and Perceptions of Genetic Testing for Familial Defective Apolipoprotein B-100 within the Amish Community” was authored by E. Sutcliffe1,2, L. Conway2, A. Shuldiner3, B. Mitchell3, T. Pollin3. (1Lancaster General Hospital, 2Arcadia University, 3University of Maryland School of Medicine).

“This project used a qualitative interview approach to investigate the genetic risk perceptions of the Amish, their attitudes towards genetic testing, and their likelihood of engaging in preventative behaviors if found to carry this mutation. The goal was to identify elements necessary for a successful program that would identify high risk individuals in the Lancaster County Amish community and provide them with potentially life-saving treatments and interventions.

“Thirty individuals attending the Amish Research Clinic in Lancaster, Pa., were interviewed. Collected data were analyzed and coded for common themes. Participants perceived a great deal of importance in genetic risk and were aware of the significant impact genetic make-up has on health. Additionally, most individuals perceived genetic risk as more significant than family history, although family history was also understood to be a risk.

“All of the twenty-four individuals who would consider testing reported they would take proactive measures to reduce risks in the event of a positive result. Risk reduction tactics most participants preferred included diet modification, exercise, and natural health remedies, with prescription medication only as a last resort. However, several participants stated that most Amish individuals would not be likely to take advantage of predictive genetic testing if there was no relevant personal or family medical history. Therefore, the most successful protocol for a testing/treatment program for the Amish would involve community outreach and awareness of potential benefits of genetic screening, risk reduction education and support, and individualized medical management.”