Experiences of Genetics Patients With Visible Abnormalities Who Facilitate Teaching in Genetics Clinics

Study Summary

This study will describe the experience of patients with visible physical abnormalities in the genetics clinic when they are involved in teaching others about their condition. Information from this study may be used to enhance educational experiences in genetics clinics. Patients 18 years of age and older with a visible physical anomaly who have been seen by a genetics professional in the past 5 years may be eligible for this study. In a tape-recorded telephone interview, patients are asked about the following: * Their experiences when visiting the genetics clinic * The circumstances under which they have been approached to participate in teaching others * Their perspective on specific teaching behaviors used in genetic consultations, and how this perspective is affected by their perception of their own visible difference * The benefits and downsides of being involved in teaching others * The circumstances under which they feel comfortable being approached by genetics providers to help teach others about their condition * The conditions or circumstances that make some individual teaching experiences better or worse than others