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Video
TraineeHub: Publishing ELSI in Scientific Journals
"Publishing ELSI in Scientific Journals" took place on September 7, 2023. This session was tailored to trainees and early career scholars aspiring to publish ELSI-related work in scientific… -
Video
Fair Access and Equity of Individualized Interventions for Ultrarare Genetic Conditions
This ELSI Friday Forum took place on September 8, 2023. Since application of the first individualized therapy in 2019, development of these bespoke treatments has expanded rapidly. Individualized…- Ultrarare Diseases
- N-of-1
- Individualized Therapies
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Video
TraineeHub Grantsmanship Series: The Writing and Uses of Specific Aims
"The Writing and Uses of Specific Aims" took place on July 19, 2023. The Specific Aims section of grant proposals is only one page, but it is one of the hardest to write, with many uses beyond the…- Specific Aims
- Grantsmanship
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Video
Population Descriptors in Genomic Research: Applying the NASEM Recommendations
This ELSI Friday Forum took place on July 14, 2023. History demonstrates that the potential for typological thinking continues to be a hazard of genetic research involving human groups. In 2022 the…- population descriptors
- NASEM
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Collection
The Evolution of Race and Population Identifiers in Scientific Thought and Practice
The fields of genetics and genomics are at a historically significant crossroads. After more than a century of criticism concerning the use of racial categories in human biological research (by a…- scientific racism
- population identifiers
- NASEM
- colonialism
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Video
Publishing in Bioethics Journals - What You Need to Know
Presenters: David Magnus, PhD & Holly Tabor, PhD Moderator: Maya Sabatello, LLB, PhD Date: June 29th, 2023, 12 p.m. ET This session for trainees and early…- Authorship
- Publishing
- Journals
- Bioethics
- Authorship
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Video
Legal and Policy Challenges to Privacy in the Post-Genomic and Post-Dobbs Era
This ELSI Friday Forum took place on June 9, 2023. Rapid growth in genetic understanding presents challenges for expectant parents, now complicated by the Dobbs decision’s removal of federal…- genetic privacy
- Legal
- Policy
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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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Video
Value and Values in Payment for Gene Therapies
The ELSI Friday Forum was held on May 12, 2023. Advances in gene therapies for monogenic disorders have brought hope of curative treatment. Since the Food and Drug Administration first approved a…- gene therapies
- cost of gene therapies
- payment
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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