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Video
The Failed Protection of Proposed Changes to HIPAA
ELSIcon2024 • Paper • June 12, 2024 Authors: Speaker: Ellen Wright Clayton, JD, MD (she/her/hers) - Vanderbilt University In the aftermath of Dobbs</em>, many states have…- ELSIcon2024
- 6th ELSI Congress
- Law, regulation, and governance
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Video
ELSI of implementing clinical genetic testing in kidney disease and transplantation care
ELSIcon2024 • Paper • June 12, 2024 Authors: Speaker: Tamar Schiff, MD (she/her/hers) - NYU Grossman School of Medicine About 37 million adults in the United States, and over 840…- ELSIcon2024
- 6th ELSI Congress
- Biobanking and genomic databases
- Clinical genetic testing
- equity and justice in genetics
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Video
Genomics Research and Childhood Obesity through the Lenses of Equity: Reassessing Responsibilities and Costs between Families and Society
ELSIcon2024 • Paper • June 12, 2024 Authors: Speaker: Ilaria Galasso, PhD - Technical University of Munich (Germany) This paper explores the ELSI of genomics research around…- ELSIcon2024
- 6th ELSI Congress
- equity and justice in genetics
- Perinatal and public health genetic screening
- Public Health
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Video
Increasing Diversity in Genetic Databases: Lessons Learned from 20 Years of Slow Progress
ELSIcon2024 • Paper • June 12, 2024 Authors: Speaker: Robert I. Field, JD, MPH, PhD - Drexel University With the rapid progress in developing tools of precision…- ELSIcon2024
- 6th ELSI Congress
- Biobanking and genomic databases
- equity and justice in genetics
- precision medicine
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Video
Cross-Disciplinary Research and Public Engagement on Eugenic Sterilization: Mixed Methods, Data Visualization, and Cross-State Comparisons
ELSIcon2024 • Panel • June 12, 2024 Authors: Moderator: Nicole Novak, PhD, MSc (she/her/hers) - University of Iowa Panelist: Heather Dron, PhD, MPH (she/her/hers) - University of…- ELSIcon2024
- 6th ELSI Congress
- disability
- Consent
- Use of race, ethnicity, and ancestry categories
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Video
Editing Future Generations, Centering Translational Justice: How Do Potential End Users Imagine the Benefits and Tradeoffs of Prenatal Genetic Therapies?
ELSIcon2024 • Panel • June 12, 2024 Authors: Corresponding Author: Julia Brown, PhD (she/her/hers) - University of California, San Francisco Panelist: Marsha Michie, PhD (she/her/hers…- ELSIcon2024
- 6th ELSI Congress
- equity and justice in genetics
- Gene therapies and gene editing
- reproductive genetics
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Video
"I have data, I have science behind my treatment plan": A qualitative study of clinician and patient views and experiences with pharmacogenomic testing for depression
ELSIcon2024 • Paper • June 12, 2024 Authors: Speaker: Katherine Hendy, PhD (she/her/hers) - University of Michigan Background: Pharmacogenomic (PGx) testing for depression…- ELSIcon2024
- 6th ELSI Congress
- Clinical genetic testing
- Patient-provider communication
- precision medicine
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Video
Psychiatric Polygenic Risk Scores in Reproductive Decision-Making: Perspectives from Adults with Psychiatric Conditions
ELSIcon2024 • Paper • June 12, 2024 Authors: Speaker: Ana Lucia Battaglino, MA (she/her/hers) - Harvard University Psychiatric polygenic risk scores (PRS) can provide relative…- ELSIcon2024
- 6th ELSI Congress
- Clinical genetic testing
- Polygenic risk scores
- reproductive genetics
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Additional Resource
ELSIcon2024 Poster | Connecting with the Ethical, Legal and Social Implications (ELSI) Research Program - NHGRI
Authors: Lawrence Brody, Ph.D. - Division Director Sheethal Jose, Ph.D. - Program Director David Kaufman, Ph.D. - Program Director Rene Sterling, Ph.D., M.H.A. - Program Director Nicole Lockhart…- NHGRI
- ELSI Research Program
- ELSIcon2024
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Video
Patient perceptions of duties and responsibilities in variant reclassification and recontact process
ELSIcon2024 • Paper • June 12, 2024 Authors: Speaker: Sukh Makhnoon, PhD, MS - University of Texas Southwestern Medical Center Reclassification of variants of uncertain…- ELSIcon2024
- 6th ELSI Congress
- Clinical genetic testing
- precision medicine
- Return of results and incidental findings