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Publication
"You're one of us now": Young people describe their experiences of predictive genetic testing for Huntington disease (HD) and familial adenomatous polyposis (FAP)
American Journal of Medical GeneticsDigital 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… -
News
A Glimpse into My ELSI Journey
In this Trainee Spotlight article, Sheethal Jose, a doctoral student at Johns Hopkins Bloomberg School of Public Health and the Berman Institute of Bioethics shares with us her research… -
Publication
Testing three different cancer genetics registry recruitment methods with Hispanic cancer patients and their family members previously registered in local cancer registries in Texas
Community GeneticsDigital 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
Ethical and practical guidelines for reporting genetic research results to study participants: Updated guidelines from a National Heart, Lung, and Blood Institute working group
CirculationDigital 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
Genentech, Inc. v. Chiron Corp., 220 F.3d 1345 (Fed. Cir. 2000): Should a patent for a genetic sequence cover its resultant protein?
Temple Environmental Law and Technology JournalDigital 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
Intellectual Disabilities: Genetic, behaviour, and inclusion, edited by Jean A. Rondal, Robert M. Hodapp, Salvatore Sorensi, Elizabeth M. Dykens, and Laura Nota
Journal of Intellectual Disability ResearchDigital 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
Consensus and variation among medical geneticists and patients on the provision of the new genetics in Germany: Data from the 1994-1996 survey among medical geneticists and patients
SpringerDigital 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… -
Research Tool
CSER Phase 1: Consent Form: (Adult Subject) Relatives of a Study Subjects - NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis and Research
This consent form from the NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis study is designed for the adult relatives of NCGENES study participants with a genetic test result… -
Research Tool
Inteview Guide: Knowledge and Attitudes about Privacy and Secondary Data Use among African-Americans Using Direct-to-Consumer Genetic Testing
Ziegler and colleagues developed this semi-structured, qualitative, interview guide to elicit perspectives from Black/African-American participants on direct-to-consumer genetic testing. Topics… -
Publication
Reproductive medicine & legal parentage: Breaking the silence on the legal rights of genetic and gestational parents -- Culliton v. Beth Israel Deaconess Medical Center
American Journal of Law and MedicineDigital 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…