Beyond the Double-Helix: The Story of Belonging
Mary Elise Nolen University of South Carolina Genetic Counseling Program, Columbia, SC; and Ben Davison, Second Presbyterian Church, Indianapolis, IN
In medicine, practitioners must manage patient expectations within the limits of medicine. The same is true of genetic counseling. Genetic counselors see patients in prenatal, pediatric, and oncology settings. They act as the liaison between genetic testing companies, doctors, and patients. They explain to patients what genes and chromosomes are and what genetic testing means for a patient, their health management, and their family. As a student I have participated in many cases where the patient comes in with expectations for the appointment that far exceeds the limits of what a genetic test may be able to offer. The Christian life contextualizes these expectations and meets them in profound and surprising ways.
In this paper, I will use a case example from my experience as a genetic counseling masters candidate. Drawing from this case I will describe themes of identity and expectation. I will offer a passage of scripture and discuss how the story of the gospel reveals to us a story to which we can orient our lives. While our physical bodies are instructed by our genes, we are in the larger Christian story revealing to whom we belong and for what purpose. This story is defined by the God who loves us.
In the field of genetics, we must remind patients and other healthcare practitioners that DNA is not destiny. A genetic diagnosis is not the whole of a person. Explicitly or implicitly, many want genetic testing to ensure that they and/or their children will not ever suffer or to prepare for how they will die. Many want to know WHY they or their family members had cancer, heart conditions, dementia, autoimmune disease, etc. Some want to know themselves or their family from their shared genes. We crave external definitions to know ourselves. This desire is rooted in a natural and healthy disposition to know thyself.
With every genetic diagnosis of a hereditary cancer syndrome, pediatric onset genetic condition, prenatally identified ultrasound finding, there is uncertainty or variability for each person. We try to steer patients away from fatalism and toward utilizing this genetic information as a tool, a piece of their health. However, it’s complicated to live in a world where we have more knowledge of our personal biology than anyone else has ever had in history. Philosopher Charles Taylor uses the term the “immanent frame” to describe a world where everything in our universe can be explained in material terms and causal relationships. In the immanent frame, there is no room to speak of God or transcendence because those are categories that cannot be measured or verified by empirical standards.
A Christian genetic counselor sees beyond the immanent frame and points to the strange world of the Bible where people are more than their family history or genetic diagnosis. Perhaps, what is needed is the relinquishing of medicine’s fatalistic grasp on the imagination of patients and healthcare practitioners. God redeems our stories and brings us into a future where we can be changed–where DNA is not our full story.
A genetic counselor reminds a patient that DNA is not identity. The story of Christ reminds us that suffering/our health is not destiny. Christ suffered and died and was raised again. We have hope in the resurrection of Jesus and have identity in Christ: “Consequently, you are no longer foreigners and strangers, but fellow citizens with God’s people and also members of his household”(Ephesians 2:19).
In this paper, I will use a case example from my experience as a genetic counseling masters candidate. Drawing from this case I will describe themes of identity and expectation. I will offer a passage of scripture and discuss how the story of the gospel reveals to us a story to which we can orient our lives. While our physical bodies are instructed by our genes, we are in the larger Christian story revealing to whom we belong and for what purpose. This story is defined by the God who loves us.
In the field of genetics, we must remind patients and other healthcare practitioners that DNA is not destiny. A genetic diagnosis is not the whole of a person. Explicitly or implicitly, many want genetic testing to ensure that they and/or their children will not ever suffer or to prepare for how they will die. Many want to know WHY they or their family members had cancer, heart conditions, dementia, autoimmune disease, etc. Some want to know themselves or their family from their shared genes. We crave external definitions to know ourselves. This desire is rooted in a natural and healthy disposition to know thyself.
With every genetic diagnosis of a hereditary cancer syndrome, pediatric onset genetic condition, prenatally identified ultrasound finding, there is uncertainty or variability for each person. We try to steer patients away from fatalism and toward utilizing this genetic information as a tool, a piece of their health. However, it’s complicated to live in a world where we have more knowledge of our personal biology than anyone else has ever had in history. Philosopher Charles Taylor uses the term the “immanent frame” to describe a world where everything in our universe can be explained in material terms and causal relationships. In the immanent frame, there is no room to speak of God or transcendence because those are categories that cannot be measured or verified by empirical standards.
A Christian genetic counselor sees beyond the immanent frame and points to the strange world of the Bible where people are more than their family history or genetic diagnosis. Perhaps, what is needed is the relinquishing of medicine’s fatalistic grasp on the imagination of patients and healthcare practitioners. God redeems our stories and brings us into a future where we can be changed–where DNA is not our full story.
A genetic counselor reminds a patient that DNA is not identity. The story of Christ reminds us that suffering/our health is not destiny. Christ suffered and died and was raised again. We have hope in the resurrection of Jesus and have identity in Christ: “Consequently, you are no longer foreigners and strangers, but fellow citizens with God’s people and also members of his household”(Ephesians 2:19).