COVID-19 raises urgent ethical issues for each of us. Our experts shape real-time responses.
  • From Our Journals

We Have Seen the Mutants—and They Are Us: Gifts and Burdens of a Genetic Diagnosis

Abstract: In this essay, I recount and examine my response to a genetic diagnosis of my disabled daughter. My daughter was forty‐nine before the diagnosis came. All her disabilities were traceable to a de novo single gene variant on the PURA gene that was discovered only in 2014. I speak of the jolt and the recalibration that this discovery engendered, concluding that, while it seemed that everything had changed, nothing had changed. But my family did discover a community in which Sesha joins other PURA‐perfect sons and daughters and where we as a family acquire a “horizontal identity” marked by a genetic variant.

Read the article

Recent Content

The Hastings Center has never shied away from the toughest ethical challenges faced by society.

LET US SHARE OUR EXPERIENCES WITH YOU

Interests
The Hastings Center has never shied away from the toughest ethical challenges faced by society.

LET US SHARE OUR EXPERIENCES WITH YOU!

Interests