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)
"Bringing the concerns of different communities together in a single volume makes it possible to appreciate the mosaic of human issues more fully and forces us to anticipate the challenges that may arise -- and that will require our attention -- as the genetic revolution proceeds." -- JAMA "A cautious look at the effects of genetic discoveries on society... The issues raised by this book are valid, and all scientists should be aware of them. I often found myself nodding in (...) agreement." -- New England Journal of Medicine. (shrink)
Intellectual property can be an important asset for academic institutions. Good data management practices are important for capture, development and protection of intellectual property assets. Selected issues focused on the relationship between data management and intellectual property are reviewed and a thesis that academic institutions and scientists should honor their obligations to responsibly manage data.