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Research Tool
Data Dictionary: Utah Genome Project - Informed Consent
This project evaluated simplified tools used to inform the public around the consent process. The data dictionary for this study outlines the structure, content, and variable definitions for the… -
Grant Abstract
From Research to Clinic: Addressing Ethical and Policy Challenges Facing the Gene Therapy Ecosystem
PROJECT NARRATIVE The translational gene therapy ecosystem faces several interrelated challenges: 1) obtaining sufficient evidence of safety/efficacy from clinical trials to justify regulatory… -
News
ELSI in Review • August 2024
About this listing ELSI in Review is a listing of recently published reviews of the literature on key ELSI topics curated by CERA staff. Our August 2024 set explores features of genetic data that…- Gm Food
- data privacy
- rare disease
- genomics education
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Research Tool
Data Dictionary: Alternate Understandings of Genetic Causation
The aim of this project is to gain understanding of the implications of alternate concepts of genetic causation for theoretical work in behavior genetics and for interventions and therapies arising… -
Publication
Management of medical information
Oxford University PressDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National… -
Publication
Enabling trade-offs in privacy and utility in genomic data Beacons and summary statistics
Genome ResearchThe Center for Genetic Privacy and Identity in Community Settings (GetPreCiSe). Grant number(s): RM1HG008995 -
Grant Abstract
Ethics and Safeguards in Psychiatric Research
Psychiatric genetic research (PGR) holds great promise for preventing, understanding, and treating neuropsychiatric disorders - a source of immense societal burden and personal suffering. Such…- Addiction
- Address
- Area
- Attitude
- base
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Publication
Recombinant DNA research: Notice of intent to propose amendments to the NIH guidelines for research involving recombinant DNA molecules (NIH guidelines) regarding enhanced mechanisms for NIH oversight of recombinant DNA activities
Human Gene TherapyDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National… -
Publication
Neglected ethical issues in biobank management: Results from a U.S. study
Life Sci Soc Policy