No field of biology or medicine has engendered so much interest, hope, and hype as genetics. Rapid development of genetic and genomic research and translation from bench to bedside present increasingly complex ethical, legal, and social issues that challenge researchers, IRBs, public health workers, and others involved in the research enterprise. Most are not fully informed about the perplexing yet critical intricacies of genetic and genomic research or even with the latest regulations and guidance. In response to this need, we propose an innovative series of conferences, """"""""Ethics of Genetics in Research"""""""" (EGIR) to reduce gaps in knowledge and understanding. With an outstanding faculty that is inter- disciplinary, inter-institutional, and international, we will develop, conduct, evaluate, and globally disseminate unique conference programs for all involved in research - clinical and bench investigators, research staff, IRB members, and administrators. Recognizing needs of diverse communities, we plan two annual 1.5 day conferences at distinct and diverse hospital sites. With special attention to minority groups, our first conference will be at Columbia University Medical Center, followed by a partnership with Harlem Hospital Center to ensure we reach diverse inner-city audiences. We will also video-conference to Zulia University, Maracaibo, Venezuela. As a further innovative aspect, conference presentations will be disseminated via the Internet, accessible, at no cost, to a worldwide audience. Our focus is on three overarching themes in genetic and genomic research: (1) privacy, (2) informed consent, and (3) emergent issues. We examine topics such as discrimination, stigma, pharmacogenomics, role of the IRB, genetics and race, screening, enhancement, data bases, gene patenting, behavioral and mental health genetics, research with women, children, and vulnerable communities, and genetics and public health. EGIR conferences build on our expertise, access to an expert faculty, and partnerships with diverse communities. Evaluations of conferences allow for iterative improvement. Through these efforts, we will enhance knowledge and application of ethical principles in this burgeoning and vital area. Our conferences address vast ELSI issues for individuals, families, medical care, and public health policy. Our expertise, experience, and innovation promise to raise interest, reduce hype, and maintain hope.
