Katherine Kron Helbig, who earned her Master of Science in Genetic Counseling in 2009 and was the first Genetic Counseling recipient of an Ellington Beavers research award while at Arcadia, has published her thesis project in Epilepsia, one of the premier journals in epilepsy research..
Helbig is now pursuing a Ph.D. at the Section of Epidemiology in the Institute for Experimental Medicine at the Christian-Albrechts University of Kiel in Germany. Germany does not have master’s trained genetic counselors, and Helbig is interested in using her training to pursue making genetic counseling there more patient-oriented and in bridging the gap between the science and medical issues and the needs of patients, reports Kathleen Valverde, Director of Arcadia’s Genetic Counseling program. She notes that Helbig’s research advanced knowledge of how both men and women with epilepsy make decisions about reproduction.
Helbig’s project looked at the perceptions people with epilepsy have of the risk to their children and whether that plays a role in reproductive decision-making.
“We investigated estimated offspring risk among people with epilepsy and factors important in the family-planning process. Data were collected for 88 participants using a questionnaire assessing perceived risk of offspring to develop epilepsy, importance of factors in the reproductive decision-making process, decision to have fewer children, and association between risk perception and family planning decisions. Thirty-four percent of participants had fewer children because of their epilepsy,” according to her abstract.
“Concerns about the ability to care for a child (p < 0.0001) and passing epilepsy onto a child (p = 0.003) were associated with the decision to have fewer children. The mean estimated risk of offspring to develop epilepsy was 26 percent, a four-fold increase over estimated population risks. Genetic counseling may be beneficial for people with epilepsy, given the considerable overestimation of offspring risk,” she concludes.
Her research was done in collaboration with several people, including Laura J. Conway and Kathleen D. Valverde, Assistant Professors in Arcadia’s Genetic Counseling program, and Dr. Michael Sperling of the Department of Neurology at Thomas Jefferson University. Sperling gave Helbig access to the patients at his clinic and closely supervised her project. Read more on her publication.