Doctoral Student: Ronna Popkin
Graduation Year: 2019
Degree/Concentration: PhD/Sociology
Dissertation: "Variants of Significance? The Production and Management of Genetic Risk for Breast and Ovarian Cancer in the Era of Multi-Gene Panel Testing.”
WHAT WAS YOUR DISSERTATION TOPIC AND RESEARCH?
My dissertation research examines the production and management of genetic risk for breast and ovarian cancer in the United States in the new era of multi-gene panel testing. Drawing on three years of ethnographic fieldwork and in-depth interviews with genetics health professionals and women with mutations, the project is the first social science study to examine how breast and ovarian cancer genetic risk is constructed and managed among women with variants of uncertain significance or moderate-risk mutations. Moving beyond an individual-level focus on women’s risk management decisions, the project instead explores how the structures, practices, and organization of genetic medicine constrain and enable those decisions.
WHAT MADE YOU INTERESTED IN PURSUING THIS WORK? WHY DO YOU ENJOY IT?
My original interest in women’s health and genetic risk for cancer was inspired by my mother’s life journey, as she is a BRCA1 mutation carrier who has survived two primary breast cancers and ovarian cancer. Then, in the spring of 2013, there were concomitant shifts in the social, scientific, and regulatory contexts of cancer genetic testing in the United States, and I became interested in how the field of genetic medicine was responding to those changes and the impact of the changes on women’s lives. The Supreme Court of the United States issued a unanimous ruling that revoked the patents on the BRCA genes that the laboratory Myriad Genetics had held since their discovery nearly two decades earlier. In combination with concurrent increases in the speed and power of genetic sequencing methods, that Supreme Court decision transformed the landscape of genetic testing in the United States. Other laboratories quickly entered the BRCA testing market and competed by bundling tests for BRCA mutations with tests for mutations on 20 - 30 other genes associated with low to moderate BOC risk. Compared to the earlier targeted tests of the well-known, high-risk BRCA1/2 genes, these multi-gene panels generated considerably more genetic information for experts to interpret and explain, much of which was not medically actionable. Hence, the rapid shift to panel testing for genetic risk ushered in a new era in genetic medicine rife with scientific and clinical uncertainties. What I have enjoyed most about this work is the opportunity to do research that has scientific and social significance and could help to improve women’s health care.
HOW HAS THE "SMS LENS" (SEEING PUBLIC HEALTH AS EMBEDDED IN SOCIAL/CULTURAL/ECONOMIC/POLITICAL CONTEXTS) INFLUENCED YOUR PROFESSIONAL ATTITUDES AND APPROACHES IN ADDRESSING ISSUES IN YOUR WORK?
As a feminist health scholar, I chose to pursue a PhD in SMS because I wanted to be in a program that didn’t just tolerate, but rather required students to engage in interdisciplinary scholarship that examines the social, political, and economic dimensions of health and medicine. The "SMS lens" encouraged me to study the active, and sometimes variable, production of cancer genetic risk rather treating risk as a preexisting, objective fact that was discovered. In addition, I explored how the structures of gender and genetic medicine in the United States are coproduced, illustrating how the practices of breast and ovarian cancer genetic medicine both emerge from and reinforce conventionally gendered notions about women’s bodies and social roles.
WHAT TYPE OF WORK ARE YOU CURRENTLY DOING, AND HOW HAVE YOU APPLIED THE SKILLS YOU LEARNED IN YOUR SMS TO THAT WORK?
I am currently a Program Officer in the Population Dynamics Branch of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). In this position, I manage a portfolio of extramural grants in my areas of science and work with other program officers and extramural staff at NICHD to shape programmatic and funding priorities in demography, reproductive health, and the population sciences. The skills I have learned through my interdisciplinary training in SMS have helped me to critically engage with a broad range of science and to work with researchers from a variety of fields.