Religion/Spirituality and the Breast Cancer Genes (BRCA)
Alexandra Nichipor, MTS '15, Harvard Divinity School, Research Assistant, Initiative on Health, Religion, and Spirituality, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute
Background: Increasing numbers of patients are undergoing genetic testing, particularly for risk-conferring genetic mutations such as BRCA1 and BRCA2, which are linked to an 85% lifetime risk of breast cancer and elevated risk of many other cancers. However, little is known about the influence of religion/spirituality on the ways that patients understand and cope with the knowledge of their genetic risk. Prior anthropological studies have examined the relationship between Ashkenazic Jewish heritage and population rates of genetic mutations, but have not sufficiently examined the ways that religion and knowledge of genetic risk influence patients’ lives. This project seeks to map the landscape of the relationship between religion/spirituality (as culture, as practice, as philosophy) and the experiences of women with BRCA mutations.
Methods: This project utilizes a qualitative study design consisting of demographic questions about age, sex, and heath status, and 8 open-ended questions about religious/spiritual background and coping. This survey was distributed via an online forum for women with BRCA mutations, and 93 participants responded. Theme extraction was employed to analyze the results of this survey.
Results: Respondents primarily identified as Christian (45%), atheist/agnostic/spiritual but not religious (28%), and Jewish (19%). 20% of respondents noted that their faith changed after diagnosis, with most indicating that their religious/spiritual beliefs had deepened or gotten stronger after diagnosis. 85% of respondents noted that they found some spiritual practices helpful in coping with knowledge of their BRCA status, with the most commonly-cited activity being prayer. 22% said they found at least some religious texts, stories, or doctrines particularly hard to handle after diagnosis, with a number of respondents indicating situations of religious coercion.
Conclusion: These findings indicate that religious/spiritual practices and beliefs may play a substantial role in the lives of those undergoing genetic testing for cancer risk. Future research should develop a fuller picture of this role, and aim to include more women of minority faiths (Hindu, Muslim, etc.).
Background: Increasing numbers of patients are undergoing genetic testing, particularly for risk-conferring genetic mutations such as BRCA1 and BRCA2, which are linked to an 85% lifetime risk of breast cancer and elevated risk of many other cancers. However, little is known about the influence of religion/spirituality on the ways that patients understand and cope with the knowledge of their genetic risk. Prior anthropological studies have examined the relationship between Ashkenazic Jewish heritage and population rates of genetic mutations, but have not sufficiently examined the ways that religion and knowledge of genetic risk influence patients’ lives. This project seeks to map the landscape of the relationship between religion/spirituality (as culture, as practice, as philosophy) and the experiences of women with BRCA mutations.
Methods: This project utilizes a qualitative study design consisting of demographic questions about age, sex, and heath status, and 8 open-ended questions about religious/spiritual background and coping. This survey was distributed via an online forum for women with BRCA mutations, and 93 participants responded. Theme extraction was employed to analyze the results of this survey.
Results: Respondents primarily identified as Christian (45%), atheist/agnostic/spiritual but not religious (28%), and Jewish (19%). 20% of respondents noted that their faith changed after diagnosis, with most indicating that their religious/spiritual beliefs had deepened or gotten stronger after diagnosis. 85% of respondents noted that they found some spiritual practices helpful in coping with knowledge of their BRCA status, with the most commonly-cited activity being prayer. 22% said they found at least some religious texts, stories, or doctrines particularly hard to handle after diagnosis, with a number of respondents indicating situations of religious coercion.
Conclusion: These findings indicate that religious/spiritual practices and beliefs may play a substantial role in the lives of those undergoing genetic testing for cancer risk. Future research should develop a fuller picture of this role, and aim to include more women of minority faiths (Hindu, Muslim, etc.).