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Grant Abstract
Intellectual Property and Access to Noninvasive Prenatal Genetic Testing
The purpose of this study is to provide empirical data on effects of intellectual property (IP) and commercialization on clinical translation of noninvasive prenatal genetic testing (NIPT) and…- Aneuploidy
- base
- Base Sequence
- Bioethics
- Bioethics Consultants
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Grant Abstract
Return of Results from Psychiatric Genomics Research: Attitudes and Barriers
This project employs a multi-method, transdisciplinary approach that combines ethnographic participant- observation, interview research methods, ethical, legal, and public policy analyses. The two…- Attitude
- authority
- Bipolar Disorder
- Caring
- Case Study
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News
What is the Genomics and Society Working Group at NHGRI?
The Genomics and Society Working Group (GSWG) is the oldest of four working groups established by National Advisory Council for Human Genome Research (NACHGR) (also known as “the council”) to provide… -
News
21,000 GenETHX Records Added to the ELSIhub Publications Database
We are excited to announce the migration of over 21,000 publications from the Genetics and Ethics Database (GenETHX) created by the Bioethics Research Library (BRL), Kennedy Institute of Ethics (KIE…- ELSI publications
- GenETHX
- Georgetown University, Kennedy Institute of Ethics, Bioethics Research Library
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Publication
The other side of the self-advocacy coin: How for-profit companies can divert the path to justice in rare disease
The American Journal of Bioethics -
News
Novel Gene Therapies for Pediatric and Young Adults with Sickle Cell Disease: Engaging Patient and Parent Stakeholders Working Group
Sickle Cell Disease (SCD) is an inherited disorder that results in premature mortality and severe morbidity in millions of afflicted individuals worldwide. Novel therapies are urgently needed and…- working group
- gene therapy
- Sickle Cell
- Stakeholder Engagement
- Spotlight
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News
ELSI in Review • March 2025
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 March 2025 set explores the ELSI of forensic genetic…- Forensic Genetics
- AI
- Rare Diseases
- Newborn Sequencing
- prenatal gene editing
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Publication
Surveying public perceptions of artificial intelligence in health care in the United States: Systematic review
Journal of Medical Internet Research -
Publication
The Landscape of Cellular and Gene Therapy Products: Authorization, Discontinuations, and Cost
Human Gene Therapy Clinical Development