AMA Journal of Ethics^®

Abstract

A wire, plaster, and wood sculpture of a DNA double helix with one mismatched base pair considers how we might justly weigh overall health equity against extremely costly interventions for uncommon genetic illnesses.

 

Figure. Is the Price Right?

Media

Wire, plaster, and wood.

Caption

One mismatched base pair in a DNA sequence can cause fatal illness in its carrier. Interventions continue to evolve, offering promise for healing, perhaps, for some patients with some genetic illnesses. Prospective somatic or germline approaches are ethically fraught when they can help few, when their high costs make them inaccessible to most, and when safety and efficacy for individuals and their descendants is unknown or, perhaps, unknowable. This work asks a viewer, “How should value be assessed, and according to whom?”