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Video
ELSIcon2022 Paper: Reporting “Clinical Utility” in NICU Sequencing Studies: Systematic Review and Call for Rethinking
ELSIcon2022 • Paper • May 27, 2022 Rebecca Mueller, Chris Feudtner, Katharine Callahan Use of exome and genome sequencing are expanding in the neonatal intensive care unit with the goals of…- Language and categorization
- precision medicine
- Paper
- Pre-Recorded
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Video
ELSIconversations ELSICon2022: Stakeholder Perspectives on Data Sharing and Privacy
Co-Moderators: Vasiliki N. Rahimzadeh, PhD; Sara Ackerman, PhD, MPH; & Sandra Soo-Jin Lee, PhD Presenters: Karen Meagher, PhD, Alyx Vogle, MS CGC, & LaKisha David,… -
Video
ELSIcon2022 Flash: Communicating precision medicine research: multidisciplinary teams and diverse communities
ELSIcon2022 • Flash • May 31, 2022 Julie Beans Introduction: Precision medicine research investigates the differences in individuals’ genetics, environment, and lifestyle to tailor health…- Live
- Flash
- tools
- precision medicine
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Video
ELSIcon2022 Paper: The Individual Genome as a Commons: Getting Genome Conceptualization and Governance Right
ELSIcon2022 • Paper • May 31, 2022 Shelly Simana Current "genome conceptualization and governance" (GCG) in the U.S. is framed around individual rights and has taken on a libertarian ethos. An…- Live
- Paper
- Data and data stewardship
- identity
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Video
ELSIcon2022 Panel: Disability Justice and Precision Medicine Across the Lifespan: Towards a Future of Equity and Access
ELSIcon2022 • Panel • June 3, 2022 Kevin Mintz, David Wasserman, Leslie Francis, and Andrew Peterson This interdisciplinary panel will advance the dialogue between disability communities and those…- Live
- Panel
- Stigma and discrimination
- precision medicine
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Video
ELSIcon2022 Paper: Embryoids: What are they, should we be concerned, should they be regulated, and if so, how?
ELSIcon2022 • Paper • June 3, 2022 Ana Iltis, Kirstin Matthews Researchers have made significant strides toward studying human embryogenesis by culturing human embryos longer and creating…- Live
- Paper
- Emerging technologies - public opinion and policy
- Gene therapy and gene editing
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News
ELSI Abroad: Spotlight on the United Kingdom
CERA is pleased to share a set of interviews that aim to foster a global perspective on the ELSI field of study and inspire information sharing and collaboration across national borders. In this… -
Collection
Technologies to Operationalize Indigenous Data Sovereignty
Throughout history, data about Indigenous communities, cultures, and territories have been collected and collated through research and surveillance as part of processes of colonisation and…- Indigenous data
- Indigenous Communities
- Big Data
- decolonization
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Grant Abstract
iCONCUR: informed CONsent for Clinical data and biosample Use for Research
Being transparent about the use of data collected during clinical care is important to establish trust relationships between patients and researchers. We propose to develop a system to elicit patient…- Ambulatory Care Facilities
- Back
- base
- Caring
- Case Report Form
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Grant Abstract
Behavioral Epigenetics in Children: Exploring the Social and Ethical Implications of Translation
This Pathway to Independence Award (K99/R00) will prepare the candidate to become an interdisciplinary ELSI researcher with a high-quality, independently funded research program exploring the…- Address
- Adopted
- Anxiety
- Area
- Attention