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Publication
Prenatal testing: A review of prenatal testing and disability rights, edited by Erik Parens and Adrienne Asch; and Testing women, testing the fetus: The social impact of amniocentesis in America, by Rayna Rapp
Hypatia: A Journal of Feminist PhilosophyDigital 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
A qualitative study of unaffected ATM and CHEK2 carriers: How participants make meaning of ‘moderate risk’ genetic results in a population breast cancer screening trial
Journal of Genetic Counseling -
Publication
Is there a duty to reinterpret genetic data? The ethical dimensions
Genetics in MedicineAppelbaum and colleagues argue for the recognition of an ethical duty to reinterpret genetic variants, outline the elements of it, and consider who should bear responsibility. -
Additional Resource
Workshop Proceedings, Therapeutic Development in the Absence of Predictive Animal Models of Nervous System Disorders, the National Academies of Sciences, Engineering, and Medicine (NASEM) (2017)
This report summarizes the proceedings of a series of workshops the National Academies of Sciences, Engineering, and Medicine held from 2012 to 2016. These workshops explored the challenges that were…- NASEM
- ELSI
- report
- consensus study
- workshop proceeding
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Grant Abstract
National Information Resource on Ethics and Human Genetics
The goal of this project is to collect, and disseminate information on the ethical, legal, and social implications of human genetics. 'Human genetics' includes the HGP, genetic testing and…- Ethics
- human population genetics
- Information Systems
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Additional Resource
Symposium Proceedings, The Role of Scientific and Technical Data and Information in the Public Domain, the National Academies of Sciences, Engineering, and Medicine (NASEM) (2003)
This National Academies Press publication summarizes the proceedings of a symposium that explored the value and limits of making scientific and technical data and information (STI) available in the…- NASEM
- ELSI
- report
- consensus study
- workshop proceeding
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Additional Resource
Workshop Proceedings, Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop, the National Academies of Sciences, Engineering, and Medicine (NASEM) (2018)
This National Academies Press publication summarizes the proceedings of a workshop that explored data management in international research agreements. The workshop was convened by the Working Group…- NASEM
- ELSI
- report
- consensus study
- workshop proceeding
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Grant Abstract
Penn Postdoctoral Training Program in the Ethical, Legal and Social Implications of Genetics and Genomics
Project Narrative Genomic technologies promise to transform our understandings of human biology and history and offer unprecedented power to influence the health of individuals and generations. Such…- ethical legal social implication;Genetic;Genomics;post-doctoral training;Training Programs
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Video
ELSIconversations - Pharmacogenomic Testing (PGx) in Psychiatric Care: Exploring Ethical and Regulatory Frontiers, Session 2
Session title: Exploring Ethical, Equity, and Regulatory Implications for Pharmacogenomics in Psychiatric Care Settings Duke Margolis Institute for Health Policy and CERA Collaboration There are…- pharmacogenomics
- PGx
- Psychiatric
- equity
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Video
Twisted Helix: Can Public-Private Partnership Genomic Projects Be Fair and Equitable?
Biotechnological innovation almost always entails all three strands of the triple helix: academia, government, and industry. This is increasingly true for large scale genomics and biomedical research…- Government
- Industry
- Private Enterprises