Article

ELSI in Review • June 2022

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 2022 set explores distributed ledger technology in…

Spotlight

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…

NIH Announcement

All of Us Research Program Seeks Input on Environmental Health Data

The National Institutes of Health’s All of Us Research Program has issued a Request for Information (RFI) to gather public suggestions on integrating environmental health data into its platform for…

Spotlight

SNAPSHOTs: Expanding ELSI Education

Announcing the Personal Genetics Education Project (pgEd) / CERA Partnership

Article

ELSI in Review • May 2022

About this listing ELSI in Review is a listing of recently published, systematic reviews of the literature on key ELSI topics curated by CERA staff. Our May 2022 set explores person-centered…

Spotlight

New ELSIconversations with the Ancestry and Diversity Working Group of ClinGen

The Ancestry and Diversity Working Group (ADWG) of the Clinical Genome Resource (ClinGen) was founded in 2017, with the goal of providing guidance about how population descriptors such as race,…

Spotlight

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…