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Grant Abstract
Developing a Genomics Literacy Measure
Genomic literacy plays a critical role in informed decision-making for genomic testing, in the implementation of the test and the accurate interpretation of the results, and in our policy making…- American
- Awareness
- Biological Sciences
- Calibration
- Clinical Research
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Video
ELSIcon2022 Paper: Systematic review of recommendations on the use of race, ethnicity and ancestry in the context of genetics research
ELSIcon2022 • Paper • May 27, 2022 Madelyn Mauro, Anna Lewis The appropriate use of population descriptors in genetics and beyond has been an often visited topic. Here we present the results of a…- Language and categorization
- Ethnicity
- Use of race and ancestry in research and the clinic
- Paper
- Pre-Recorded
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Video
ELSIcon2022 Panel: Beyond the Binary: A Panel Discussion About Gender, Genomics, and Justice
ELSIcon2022 • Panel Session 3 • May 31, 2022 Leila Jamal, Tala Berro, Kellan Baker, Kimberly Zayhowski The term gender diversity refers to a spectrum of identities that exist on a continuum…- Live
- Panel
- Stigma and discrimination
- health disparities
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Grant Abstract
Primary Care Genetics Cancer Prevention Conference
We propose an innovative video teleconference hosted by the Brown University Center for Primary Care and Prevention and the University of Oxford Department of Primary Healthcare with the goals of: 1…- cancer prevention
- meeting /conference /symposium
- neoplasm /cancer genetics
- patient care management
- telecommunications
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Grant Abstract
Clinical Use of Research Genetic Tests in Arrhythmia
Clinicians and patients often seek to determine the cause of disease, particularly when they believe that knowing the cause will affect management. Both scientific and public media, with their focus…- Arrhythmia
- cardiovascular disorder risk
- Clinical Research
- genetic disorder diagnosis
- Genetic Screening
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News
ELSI in Review • February 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 February 2024 set explores ethical considerations for… -
Grant Abstract
Pulmonary Benefits of Cystic Fibrosis Neonatal Screening
Although cystic fibrosis (CF) is the most common, life threatening autosomal recessive genetic disorder of the white population, there are often delays in diagnosis and hence initiation of treatment…- adolescence (12-20)
- child (0-11)
- Cognition
- cost effectiveness
- Cystic Fibrosis
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Publication
How many billions is enough? Prioritizing profits over patients with cystic fibrosis
Pediatric PulmonologyMcGarry and colleagues criticize Vertex pharmaceuticals, the sole manufacturer of cystic fibrosis transmembrane conductance regulator (CFTR) modulators, for drastically decreasing its copayment… -