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Value Ethics: Mapping Strategies for Value Assessment and Reimbursement of Targeted Genomic Therapies for Rare Diseases – A New CERA Working Group
CERA Working Groups are interdisciplinary teams that aim to deepen our understanding of emerging, high priority, or understudied ELSI issues using innovative approaches. CERA selects one or two…- genetic therapy
- cost of gene therapies
- working group
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News
Ethical Issues in Pediatric Gene Therapy Clinical Trials
The Working Group on Pediatric Gene Therapy and Medical Ethics (PGTME) was created in 2019 to study ethical issues surrounding research in genetic interventions for pediatric populations. The group…- pediatric gene therapy
- Pediatric Research
- Informed Consent
- Research Ethics
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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
Using a Family Advisory Council to Understand the Informational Needs of Prospective Gene Therapy Trial Participants: An Interview with the Co-PIs of the SCDGENE CERA Working Group
Sickle cell disease (SCD), characterized by severe pain crisis and progressive organ damage as well as early death, is one of the most common inherited blood disorders in the world. However, since 90…- sickle cell disease
- gene therapy
- Sickle Cell
- gene therapies
- community based participatory research
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News
Capacities of Global Institutions for Gene Drive Governance
Gene drive technologies represent a promising approach to the reduction of the global health burden posed by insect-borne infectious diseases like malaria and dengue. The application of new…- Gene Drive Technology
- Global Governance
- regulatory
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News
Informed Consent in Genomic Medicine – Strengthening Assessment, Ethical Resilience, Practice
The GE2P2 Global Foundation – a 2016 spin-off from the Division of Medical Ethics, NYU School of Medicine – has launched a multi-year initiative to assess and materially strengthen informed consent…- genome informed consent
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News
ELSI in Review • January 2024
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 January 2024 set explores experiences with genetic… -
News
ELSI in Review • April 2024
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 2024 set explores precision microbiome engineering… -
News
ELSI in Review • March 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 March 2023 set explores the ethics of gene therapy,… -
News
ELSI in Review • June 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 June 2023 set explores transparency in secondary use…