Graduation Year

2019

Document Type

Dissertation

Degree

Ph.D.

Degree Name

Doctor of Philosophy (Ph.D.)

Degree Granting Department

Anthropology

Major Professor

Heide Castañeda, Ph.D., MPH

Co-Major Professor

Linda Whiteford, Ph.D., MPH

Committee Member

Lorena Madrigal, Ph.D.

Committee Member

Deborah Cragun, Ph.D., MS, CGC

Committee Member

Dinorah Martinez-Tyson, Ph.D., MPH

Keywords

breast cancer, hereditary cancer, ovarian cancer, United States, women's health

Abstract

Genetic testing has become ubiquitous in contemporary society, from determining ancestry to addressing health concerns. This dissertation focused on a qualitative, feminist approach to understand women’s experiences of genetic testing for hereditary cancer syndromes, as well as their perspectives of risk. A total of 33 participants agreed to a semistructured interview and drawing of their family tree (pedigree). Eleven (40.7%) participants had been diagnosed with breast cancer, and 16 (59.3%) participants with ovarian cancer. Thirty-one (93.9%) participants had genetic testing, and of those, 17 (54.8%) had genetic counseling. Participants voiced several reasons why they wanted to undergo genetic testing or how they planned to use genetic test results, including: to obtain information for their family members, for cancer treatment options, for surveillance of other cancers, and/or for more information about their disease. Family was the most frequently discussed theme, but surveillance and treatment discussions highlighted important areas for provider communication improvement. Participants were also asked about how their reaction to their genetic test results, which ultimately underscored the importance of the provider in pre-test genetic counseling. Women who received positive test results (n=5, 16.1%) with a non-genetics professional (NGP) reported largely negative reactions, while women who received positive results (6, 19.3%) with a genetic professional (GP) reported much more relaxed reactions to their test results. Eighteen (58.1%) participants received negative test results, and many reported “mixed feelings” about their results, regardless of the type of provider they saw. While provider type did not seem to affect the way women in this group viewed their test results, their reactions point to important questions about how risk and ideas of genetic determinism are discussed with patients. When asked about risk, participants described constant worry around their cancer risks, and the ways in which they attempted to control their perceived risks. This dissertation research provides an in-depth understanding of women’s experiences and aspirations for genetic testing, which can be used by providers to improve the process of genetic testing and counseling. Among the many findings, I argue that male-dominated, biomedical hegemony can be seen in the patterns of care experienced and reported by the women in this study. This research contributes to the literature on women’s health, cancer, genetic testing, and biomedicine, and is meant to be applied to improve the outcomes of the many women who undergo genetic testing.

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