The DIGNITY project

Genetic screening and testing increasingly offers us opportunities to predict, prepare for, and sometimes avoid disabling conditions. As patients, parents, caregivers, and genetic relatives, genetic information alters our understanding of disability and normalcy, and the opportunity to know may also bring an obligation to act.

We are still coming to terms with what these rapidly changing technologies can—and cannot—do; what the information they provide means for ourselves and those we care for; and what responsibilities these kinds of knowledge entail (and to whom).

The goals of the DIGNITY (DIsability, GeNetics, and IdentiTY) project are to describe the ways in which discovering genetic risk or receiving a diagnosis of a disabling condition alters the identities of patients and their families, and to determine the effects of these alterations on their social and health behaviors. DIGNITY is an umbrella project that will generate and guide several solo and collaborative projects, including the PREPARE study.