PROJECT NARRATIVE The goal of the biennial ELSI Congress is to provide a dedicated, regularly scheduled meeting for researchers focused on the ethical, legal and social implications of genetic and genomic research and its translation into clinical care.
PROJECT NARRATIVE The proposed K01 Award?'Evaluating the Risks and Benefits of the Next Generation of Direct-to-Consumer Genetic Tests??will enable the candidate to acquire the academic background, research experience, and professional skills to become an independent ELSI investigator exploring the risks and benefits of current and emerging direct-to-consumer (DTC) genetic tests.
PROJECT NARRATIVE This project is relevant to public health because achieving the health benefits of preventive gene editing research will depend on governance that is responsive to public concerns. This project is relevant to NHGRI?s mission because of the role that new genomic knowledge will play in the policy challenges that the research proposed here helps address.
PROJECT NARRATIVE We will undertake epidemiological, historical and mixed-methods analysis of nearly 30,000 eugenic sterilization requests processed by three U.S. states: California, North Carolina, and Iowa, between 1919 and 1974. Working with de-identified datasets and using methods we developed during the R21 phase of this project, we will estimate and compare population-based rates of sterilization according to gender, age, ethnicity, nationality, diagnosis, state, and time period.
The Public and Professional Policy Committee (PPPC) of the European Society of Human Genetics (ESHG), chaired by Francesca Forzano, discusses and issues statements on the responsible translation of technological developments in human genetics.
The Mentored Scientist Development Award in Research Ethics will fulfill three main goals: 1) to obtain a broad and in-depth foundation in research ethics and to develop research skills in ethical reasoning and analysis in order to become a resource for those pursuing biomedical research; 2) to build a research program on the ethical implications of human genetic variation research for social distributive justice; and 3) to become an independent investigator in the field of research ethics upon the completion of this career development award.
The mission of the proposed Center for Genetics Research Ethics and Law (CGREL) is to foster sustained interdisciplinary research on the ethical, legal, and social issues involved in the design and conduct of human genetics research with individuals, families, communities, and populations. CWRU already hosts a variety of research efforts relevant to the CGREL's theme. The CGREL will integrate these efforts to launch new research collaborations and provide the resource structure necessary for their application to high priority genetics research policy questions.
The Center for Integration of Research on Genetics and Ethics (CIRGE) was established in 2004. The overall goal of CIRGE is the proactive identification and integration of ethical, legal and social considerations into the design and conduct of current and emerging genetic research. Our thematic focus is on genomics of behavioral traits.
Researchers and bioethicists have developed guidelines to protect human subjects in clinical experiments involving genetic technologies. However, these rules were developed for investigations of therapeutic interventions and do not address the risks involved in the potential use of genetic technologies for enhancement purposes.