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Research Tool
CSER Phase 1: Personalized Oncology Through High-throughput Sequencing:
MI-ONCOSEQ Study Protocol
The Personalized Oncology Through High-throughput Sequencing: MI-ONCOSEQ (Michigan Oncology Sequencing Center) (formerly known as “Personalized Medicine Based on Molecular Profiling of Patients with… -
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
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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Research Tool
Introduction to Precision Medicine Research (Video), The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research
This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research. The video series was… -
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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Grant Abstract
Methods for Promoting Public Dialogue on the Use of Residual Newborn Screening
Newborn screening (NBS) is conducted on virtually every child born in the U.S. primarily through state-based public health programs. Following testing, there is blood leftover on each child that is…- Advisory Committees
- Advocate
- Affect
- Attitude
- Authorization documentation
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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
Regulation of International Direct-to-Participant Genomic Research
New techniques for genomic research are being developed to take advantage of the ability to contact research participants directly, without utilizing physicians, hospitals, or biobanks. Researchers…- American
- biobank
- Biological
- Blood specimen
- Collaborations