Religion, Spirituality, and the Clinical Introduction of New Prenatal Genetic Technologies: Walking the Line Between Patient-Centered Care and Controversy
Ruth Farrell, M.D., MA, Staff, Cleveland Clinic
Pat Agatisa, PhD., Cleveland Clinic
Rev. Amy Greene, Director of Spiritual Care, Cleveland Clinic
Introduction: Advances in prenatal genetic technologies have made it possible to identify dozens of fetal genetic conditions from a single maternal blood sample. While it is known that the decision-making process for these tests is made in conjunction with a pregnant woman’s values about disability, quality of life, and termination (concepts often grounded in an individual’s religious and spiritual beliefs and practices), how to facilitate effective discussions around these topics when desired by the patient remains uncertain. In the context of reproductive health, the topics of religion and spirituality oftentimes provoke controversy. As a result, it can be difficult for patients and reproductive healthcare providers to have meaningful conversations around religion and spirituality as they relate to prenatal genetic testing, a factor that can interfere with the exchange of information and consent process. This raises the question of how providers can best support patients in their decision-making with the continued rapid growth of prenatal genetics, increasing not just the amount of information that can be gained about the fetus but also the complexity and uncertainty associated with decisions about the pregnancy and family.
Methods: We conducted in-depth interviews to explore the role of pregnant patients’ spiritual and religious beliefs considering the use of cfDNA screening, the newest prenatal genetic testing option.
Results: In-depth interviews were conducted with 26 women who were 1-5 months postpartum (mean 3.0 months). Seventeen of these women had cfDNA screening and 9 declined cfDNA screening. Four main themes emerged: (1) Consideration of one’s religion and spirituality plays an integral role in pregnant women’s healthcare decisions about cfDNA screening, specifically defining quality of life of a child with a potentially severe genetic condition. These are personal guideposts throughout the screening process, beginning with the initial decision to screen and carrying over into subsequent prenatal care decisions based on the result of that initial screen decision. (2) It is anticipated that patients’ religious and spiritual beliefs will play an increasingly important role in the decision-making process as it becomes possible to learn about hundreds of genetic conditions associated with different phenotypes and severity. (3) While some pregnant patients want to engage in discussions about their religious and spiritual beliefs when considering their testing options, others are not comfortable discussing such topics or feel this is beyond the purview of their obstetric provider. (4) Overall, there is hesitation to discuss religious and spiritual beliefs with an obstetric provider out of fear of negative ramifications for the provider-patient relationship and/or their prenatal care.
Conclusions: Religion and spirituality play an important role in patients' navigation of the complex array of prenatal testing decisions, and will play a more expansive role with advances in cfDNA technology. There is a need to develop personalized strategies for patients and reproductive healthcare providers to engage in discussions about religion and spirituality to assist in a decision-making process marked by increased complexity and uncertainty for the patient and her family.
Pat Agatisa, PhD., Cleveland Clinic
Rev. Amy Greene, Director of Spiritual Care, Cleveland Clinic
Introduction: Advances in prenatal genetic technologies have made it possible to identify dozens of fetal genetic conditions from a single maternal blood sample. While it is known that the decision-making process for these tests is made in conjunction with a pregnant woman’s values about disability, quality of life, and termination (concepts often grounded in an individual’s religious and spiritual beliefs and practices), how to facilitate effective discussions around these topics when desired by the patient remains uncertain. In the context of reproductive health, the topics of religion and spirituality oftentimes provoke controversy. As a result, it can be difficult for patients and reproductive healthcare providers to have meaningful conversations around religion and spirituality as they relate to prenatal genetic testing, a factor that can interfere with the exchange of information and consent process. This raises the question of how providers can best support patients in their decision-making with the continued rapid growth of prenatal genetics, increasing not just the amount of information that can be gained about the fetus but also the complexity and uncertainty associated with decisions about the pregnancy and family.
Methods: We conducted in-depth interviews to explore the role of pregnant patients’ spiritual and religious beliefs considering the use of cfDNA screening, the newest prenatal genetic testing option.
Results: In-depth interviews were conducted with 26 women who were 1-5 months postpartum (mean 3.0 months). Seventeen of these women had cfDNA screening and 9 declined cfDNA screening. Four main themes emerged: (1) Consideration of one’s religion and spirituality plays an integral role in pregnant women’s healthcare decisions about cfDNA screening, specifically defining quality of life of a child with a potentially severe genetic condition. These are personal guideposts throughout the screening process, beginning with the initial decision to screen and carrying over into subsequent prenatal care decisions based on the result of that initial screen decision. (2) It is anticipated that patients’ religious and spiritual beliefs will play an increasingly important role in the decision-making process as it becomes possible to learn about hundreds of genetic conditions associated with different phenotypes and severity. (3) While some pregnant patients want to engage in discussions about their religious and spiritual beliefs when considering their testing options, others are not comfortable discussing such topics or feel this is beyond the purview of their obstetric provider. (4) Overall, there is hesitation to discuss religious and spiritual beliefs with an obstetric provider out of fear of negative ramifications for the provider-patient relationship and/or their prenatal care.
Conclusions: Religion and spirituality play an important role in patients' navigation of the complex array of prenatal testing decisions, and will play a more expansive role with advances in cfDNA technology. There is a need to develop personalized strategies for patients and reproductive healthcare providers to engage in discussions about religion and spirituality to assist in a decision-making process marked by increased complexity and uncertainty for the patient and her family.