Project Narrative Studies suggest that distrust is a major barrier for participation of minorities in Precision Medicine Research (PMR), though no study has examined the sources of (dis)trust and factors affecting views on trustworthiness of PMR among people with disabilities. This study proposes to engage with people with mobility, visual and hearing disabilities?the most common conditions in the U.S.?across racial/ethnic communities and with translational genomic researchers, the leaders in PMR, to close this gap.
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.
This bill requires a state agency or educational institution to obtain consent from parents or eligible students prior to collecting certain data, including biometric records. Biometric records are defined to include DNA. Bill Status: Died
The National Information Resource on Ethics & Human Genetics (NIREHG), in cooperation with the National Reference Center for Bioethics Literature (NRCBL, funded by a contract with the National Library of Medicine and other sources) and with the consultation of an Advisory Board of subject matter experts, proposes:
- To continue the identification, collection, and cataloging of materials on the ethical, legal, and social implications (ELSI) of genetic research;
This project will continue the activity of the National Information Resource on Ethics and Human Genetics at the Kennedy Institute of Ethics, Georgetown University. The research group will continue to gather, catalog, index, and disseminate information on the ethical, legal, and social issues raised by the human genome project and its applications in human genetics. The materials collected by the research group will be housed at the National Reference Center for Bioethics Literature.
This project will continue the activity of the National Information Resource on Ethics and Human Genetics at the Kennedy Institute of Ethics, Georgetown University. The research group will: