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News
Introducing the Qualitative Data Sharing (QDS) Toolkit
We spoke with James M. DuBois, DSc, PhD, principal investigator of the QDS Project, about the new Qualitative Data Sharing (QDS) Toolkit. The QDS project team created the toolkit to support… -
News
ELSI in Review • July 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 July 2023 set explores digital interventions for genomics… -
News
Announcing the 5th ELSI Congress Special Issue of the American Journal of Bioethics
We are pleased to announce the publication of a special issue of the American Journal of Bioethics. The 5th ELSI Congress issue includes five target articles, thirty-one open peer… -
Collection
Dataveillance and Human Rights
Nearly 75 years ago, countries agreed to an International Bill of Human Rights, that included, among other fundamental rights, a right to privacy, a right to science, and a right to health. Cohesive…- data privacy
- data justice
- public health surveillance
- HIPAA
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News
Public Health Genomics Seeks Perspective Papers for Special Issue
Call for Perspective Papers Public Health Genomics is the first periodical to focus on rigorous research and evidence-based practice at the intersection of genomic discovery and public health.… -
News
ELSIconversations with the Ancestry and Diversity Working Group (ADWG) of ClinGen
The initial ADWG ELSIconversations were comprised of a series of three events on population descriptors (e.g., race, ethnicity, and/or ancestry) on clinical genetics laboratory requisition forms.… -
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… -
Collection
Paying for Cures: The Ethics and Economics of Gene Therapies for Rare Diseases
Rare diseases, most of which have a genetic basis, collectively affect an estimated 300 million individuals worldwide and are associated with significant morbidity and mortality. Although less than…- gene therapy
- sickle cell disease
- health economics
- nusinersen
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News
Engaging Underrepresented Communities in Research
Attention to the unique inclusion and engagement needs of understudied populations is of critical importance to the advancement of genomic and precision medicine research, the elimination of health… -
News
ELSI in Review • May 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 May 2023 set explores the utility of ChatGPT in…