To Uncover My Mother's Genetic Disorder, I Had To Lead The Way

Health Affairs Narrative Matters

A genetic counselor uses her own resources to identify the root cause of her mother’s changing personality. Read by author Shivani Nazareth, certified genetic counselor and product manager at Invitae, and a visiting lecturer at the Icahn School of Medicine at Mount Sinai.

When Nazareth’s mother became ill, symptoms pointed to dementia but potentially something more, and she suggested genetic testing to find the root cause of her mother’s illness. The fields of genomics and precision medicine are advancing rapidly, and many older adults are interested in genetic testing to help guide medical diagnosis or treatments when possible. Yet genetic counselors are not recognized as Medicare providers and cannot bill for their services under the program. Proposed legislation could change this.

If you enjoy this essay, order the December 2021 Health Affairs issue.