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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
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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… -
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… -
Video
ELSIcon2022 Paper: Seeking Diverse Inclusion in Bipolar Research: Lessons from a biobank
ELSIcon2022 • Paper • June 1, 2022 Karen Meagher, Monica Taylor-Desir How should biobanks recruit diverse cohorts from historically marginalized communities? Should they measure diversity via…- Live
- Paper
- Recruiting diverse participants to precision medicine research
- genomics research
- Biobanks
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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… -
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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News
ELSI in Review • September 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 September 2023 set explores ethical challenges associated… -
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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SNAPSHOT
Genome Editing & Organ Transplants
There is an extreme shortage of organs for people who need donations and scientists are challenged with finding a solution. Using pigs, genome editing may help us create more organs suitable for…- Gene Editing
- Organ transplants