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Video
Ethical Frameworks for Research Collaboration with Indigenous Communities
Research with Alaska Native and American Indian people has a complex history. American Indian and Alaska Native peoples, are both a racial classification and less known to most Americans, a political… -
Grant Abstract
An Experimental Study to Improve Risk/Benefit Appraisal
The specific aims of this research are to develop, implement, and assess the effectiveness of a decision balance risk-benefit component as part of the informed consent process for women deciding to…- African American
- behavioral /social science research tag
- blood disorder diagnosis
- caucasian American
- Decision Making
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In the Media
U.K. approves world’s first CRISPR-based medicine, giving green light to therapy for sickle cell, thalassemia
Stat News |Regulators in the U.K. on Thursday approved a CRISPR-based medicine to treat both sickle cell disease and beta thalassemia, making it the world’s first therapy built on the revolutionary gene-editing…- CRISPR
- CRISPR gene therapy
- Sickle Cell
- Thalassemia
- gene therapy
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Research Tool
Prenatal Diagnoses of Sex Chromosome Aneuploidies Interview Guide
This semi-structured interview guide is intended for use with individuals diagnosed with a sex chromosome aneuploidy (SCA) or with parents of a child diagnosed with a SCA. It employs open-ended… -
Grant Abstract
Self-governance in the Human Genome Editing Era: Can Science Rise to the Challenge?
PROJECT NARRATIVE Human genome editing technologies are evolving rapidly and with this evolution brings questions regarding governance and the ethical implications involved in applying these…- Area
- base
- Basic Science
- Biological Sciences
- Case Study
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Grant Abstract
Labor Conference on the Workplace and the Human Genome
This conference will bring together experts in science, ethics, and law, with experts in knowing and representing the needs of American Workers. The conference will build a base of knowledge among…- Ethics
- Genome
- Health behavior
- health insurance
- health science research
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Research Tool
CSER Phase 1: Informed Consent Document - Genomic Diagnosis in Children with Developmental Delay
This informed consent document for parents and minors in the Genomic Diagnosis in Children with Developmental Delay study includes standard consent language plus consent to storage of specimens for… -
Research Tool
eMERGE III Health Care Provider Work Group: Pre-return of Results Physician Interview Guide
This semi-structured interview guide provides physicians with scenarios in which adult and pediatric patients receive unsolicited genomic results and elicits their views about the need for provider… -
News
ELSI in Review • April 2023
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 April 2023 set explores AI innovations in the Tanzanian… -
Video
ELSIcon2022 Paper: Diversity’s Pandemic Distractions
ELSIcon2022 • Paper • June 1, 2022 Jonathan Kahn Pandemic diseases have a nasty history of racialization. Covid-19 is no exception. Beyond the obvious racist invocations of the “China virus”…- Live
- Paper
- Population screening and public health genomics
- Health Disparities