When Bad Genes Ruin a Perfectly Good Outlook: Psychological Implications of Hereditary Breast and Ovarian Cancer via Narrative Inquiry Methodology Cammi Clark ORCID Scholar ID #0000-0003-0505-0149 A Dissertation Submitted to the Ph.D. in Leadership and Change Program of Antioch University in partial fulfillment for the degree of Doctor of Philosophy July 2019 This dissertation is approved in partial fulfillment of the requirements for the degree of PhD in Leadership and Change, Graduate School of Leadership and Change, Antioch University. Dissertation Committee • Elizabeth Holloway, PhD, Chair • Jon Wergin, PhD, Committee Member • Piri Welcsh, PhD, Committee Member Copyright 2019 Cammi Clark All rights reserved Acknowledgements I am writing this acknowledgement as a public thank you to the many people in my life who helped push me across the finish line—whether they realize it or not. I would like to start by thanking my immediate family who sacrificed many late night snuggles, fun family times out on the water and shopping sprees, to ensure they never have to hear me utter the words, “I can’t today, I have to work on my dissertation,” again. I encourage them to look toward the glimmer of hope for post-dissertation normalcy. I’d also like to thank my dissertation committee members for not letting their frustration show when I relentlessly hovered over them, waiting for their feedback on each revision. I appreciate their extreme patience in allowing me to think outside of the box to make my research my own and accepting nothing less than completion from me. Without doubt, I’d like to thank all my cohort members—those who have moved on, those in the quagmire, and those just beginning—for their support, friendship, and always being at the other end of my texts, whether it be to wallow, encourage or empathize. Your efforts gave me the confirmation I needed to know I was not alone, and that this really was challenging. Lastly, but of course not least, I must thank Mary Claire King, Ph.D. Without her life-changing research, my own research would not exist. i Dedication This research is dedicated to my insanely large (or is it largely insane?) family for being on the front lines with HBOC and not backing down. It is your strength that keeps me going. ii Abstract Scientists debunked the belief that breast cancer is always viral with the mid-90s discovery of the first hereditary genetic mutation linked to a significantly higher-than average chance of breast and ovarian cancer. This genetic condition, called Hereditary Breast and Ovarian Cancer (HBOC), passes the mutation from generation to generation in a family. Thousands of variations of such mutations exist, and carriers account for 10 to 15% of all breast cancer, and up to 20% of ovarian (Childers et al., 2017). In addition, genetic testing uncovered a rapidly rising number of healthy people (never had breast/ovarian cancer) who are also carriers, flooding healthcare providers seeking potential options to reduce their elevated risk. Those prophylactic measures are invasive, permanent and can cause physical—and emotional—scarring. As a newer medical phenomenon, few, if any, studies address the potential psychological implications, which include fear, anxiety, guilt, family tension, and more. Using narrative inquiry methodology, this study analyzes the authentic lived or felt experiences of individuals when they learn that they have inherited a mutation that significantly increases their risk of breast, ovarian and related cancers, and their choices that directly affect their effort to outrun a cancer that may never come. This dissertation is accompanied by the author’s MP4 video introduction and is available in open access at AURA: Antioch University Repository and Archive, http://aura.antioch.edu/ and Ohiolink ETD Center, https://etd.ohiolink.edu/ Keywords: Breast Cancer, Breast Reconstruction, HBOC, Hereditary Breast and Ovarian Cancer, Narrative Medicine, Narrative Inquiry, Psychology of Cancer, Story, Storytelling iii Table of Contents Acknowledgements ...........................................................................................................................i Dedication ....................................................................................................................................... ii Abstract .......................................................................................................................................... iii List of Tables .............................................................................................................................. viii List of Figures ................................................................................................................................ ix Chapter I: Positionality and Statement of the Problem ................................................................... 1 Research Question ................................................................................................................... 5 Choosing Narrative Inquiry Methodology ............................................................................... 5 Overview of Remaining Chapters ........................................................................................... 7 Chapter II: Critical Review of Hereditary Breast and Ovarian Cancer ......................................... 8 Incidence of Breast and Ovarian Cancer ................................................................................. 9 History of the Discovery of HBOC ....................................................................................... 10 Biology and Incidence of BRCA1 and BRCA2 .................................................................... 11 Genetic Exceptionalism ......................................................................................................... 13 Genetic Screening .................................................................................................................. 14 Reducing Risk ........................................................................................................................ 17 Psychological/Emotional Implications .................................................................................. 17 Celebrity Public Awareness ................................................................................................... 21 Where Do We Go Now? ........................................................................................................ 23 Methodological Approaches to Psychological Ramifications ............................................... 24 Vulnerable Groups ................................................................................................................. 26 Men With HBOC .............................................................................................................. 26 Global Perspective of HBOC ............................................................................................ 27 Genetic Counseling ................................................................................................................ 28 Other Hereditary Cancer Syndromes ..................................................................................... 29 Narrative Medicine ................................................................................................................ 34 “Keep Calm and Tell Me Your Story” ............................................................................. 41 Narrative Medicine in Practice .............................................................................................. 42 Writing Workshops. .......................................................................................................... 43 Award-Winning Narrative Medicine. ............................................................................... 44 iv Implications for Leadership and Change ............................................................................... 45 Chapter III: Narrative Inquiry Methodology ................................................................................ 47 Background to HBOC and the Role and Use of Stories ........................................................ 48 Reflexivity ............................................................................................................................. 51 Principles of Dynamic Narrating in Research ....................................................................... 52 Plot Analysis .......................................................................................................................... 54 Thematic Analysis ................................................................................................................. 56 Commonplaces ...................................................................................................................... 56 Scope of the Study ................................................................................................................. 57 Method of the Study .............................................................................................................. 58 Purposeful Sample ............................................................................................................ 59 Participants ........................................................................................................................ 59 Setting Up the Interviews .................................................................................................