In The Spotlight

Event: Conference
The 5th ELSI Congress
News: Announcement
CERA Statement Against the Weaponization of Genetic Research
Video: Webinar
Addressing Algorithmic Harms: Practices and Provocations for Health AI
News: Spotlight
Value Ethics: Mapping Strategies for Value Assessment and Reimbursement of Targeted Genomic Therapies for Rare Diseases – A New CERA Working Group
Upcoming Events
Conference
The 5th ELSI Congress
Webinar
Innovation for Good: a Global Technology Governance Perspective
Webinar
Law and Technologies Webinar Series
Conference
Third International Summit on Human Genome Editing Postponed
In the Media
The New York Times
Targeting the Uneven Burden of Kidney Disease on Black Americans
The New York Review of Books
Why Biology Is Not Destiny
ELSIhub Featured News
New Publications
Moving from 'fully' to 'appropriately' informed consent in genomics: The PROMICE framework
Koplin and colleagues propose a moral framework for evaluating informed consent models and conclude that, in the context of genomic sequencing technologies, appropriately (rather than fully) informed consent can promote autonomy, well-being, and trust in medicine.
"CRISPR for disabilities: How to self-regulate" or something?
Courtright-Lim presents a decision tree to help guide self-regulation of basic research using germline editing with CRISPR.
Preparing newborn screening for the future: A collaborative stakeholder engagement exploring challenges and opportunities to modernizing the newborn screening system
The future of newborn screening (NBS) will depend on the ability of the current system to adapt to increased demands resulting from advances in gene therapies. Andrews and colleagues convened NBS experts to identify barriers and potential solutions to modernizing the NBS system.
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