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Albert R. Jonsen, PhD (1931-2020) Foundational Scholar of Bioethics
Albert R. Jonsen, PhD (1931-2020), a foundational figure and scholar in bioethics, died at his home in San Francisco on October 21, 2020. His extraordinary contributions to the field of…- Al Jonsen
- Bioethics History
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News
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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Additional Resource
Utah Center of Excellence in Ethical, Legal and Social Implications Research (UCEER)
Erin Rothwell, James Tabery, and Jeff Botkin were Principal Investigators of the Utah Center of Excellence in Ethical, Legal and Social Implications Research (UCEER) at the University of Utah in Salt…- CEER
- population genetic screening
- women
- Children
- Jeffrey Botkin
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Grant Abstract
Genomic Health Care and the Medically Underserved
Genomic research is rapidly producing new opportunities for understanding disease biology, and promises to enhance health care and health outcomes significantly through improved strategies for…- Accounting
- Address
- base
- Biology
- Caring
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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
Final report of the Task Force on Genetic Testing, appendix 6: Scientific advances and social risks: Historical perspectives of genetic screening programs for sickle cell disease, Tay-Sachs disease, neural tube defects and Down syndrome, 1970 1997
National Human Genome Research Institute -
Publication
Exploring parental cystic fibrosis disclosure to well children
Journal of Genetic Counseling -
Publication
Vaccinomics: A cross-sectional survey of public values
Human Vaccines & Immunotherapeutics -
Publication
Genetic testing of children for diseases that have onset in adulthood: The limits of family interests
PediatricsClinical Sequencing Evidence-Generating Research (CSER) Consortium. Grant number(s): HG006600 -
Publication
When theory meets practice: challenges to the field genetic counseling
Aldine de Gruyter