The following views were presented at the Annual Meeting of the American Association for the Advancement of Science Seminar “Teaching Ethics in Science and Engineering”, 10–11 February 1993 organized by Stephanie J. Bird , Penny J. Gilmer and Terrell W. Bynum . Opragen Publications thanks the AAAS, seminar organizers and authors for permission to publish extracts from the conference. The opinions expressed are those of the authors and do not reflect the opinions of AAAS or its Board of Directors.

Background. As the development and use of genetic tests have increased, so have concerns regarding the uses of genetic information. Genetic discrimination, the differential treatment of individuals based on real or perceived differences in their genomes, is a recently described form of discrimination. The range and significance of experiences associated with this form of discrimination are not yet well known and are investigated in this study. Methods. Individuals at-risk to develop a genetic condition and parents of children with specific genetic (...) conditions were surveyed by questionnaire for reports of genetic discrimination. A total of 27,790 questionnaires were sent out by mail. Of 917 responses received, 206 were followed up with telephone interviews. The responses were analyzed regarding circumstances of the alleged discrimination, the institutions involved, issues relating to the redress of grievances, and strategies to avoid discrimination. (shrink)