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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… -
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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Video
Illuminating Ethical Issues Encountered in Population Screening Programs
In the first of three sessions, panelists with experience with population genetic screening programs will discuss issues that have arisen with existing screening programs. Topics may include ethical…- Population screening and public health genomics
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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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Grant Abstract
NSIGHT: Sequencing of Newborn Blood Spot DNA to Improve and Expand Newborn Screening
The purpose of the Newborn Sequencing In Genomic medicine and public HealTh (NSIGHT) program is to explore, in a limited but deliberate manner, the implications, challenges and opportunities…- base
- Biochemical
- Biological Assay
- Blood
- Child
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News
ELSI in Review • September 2022
About this listing ELSI in Review is a listing of recently published reviews of the literature on key ELSI topics curated by CERA staff. Our September 2022 set explores parent experiences with… -
Grant Abstract
Cost-effectiveness of Whole Genome Sequencing of Healthy Adults
Whole genome sequencing has vast potential to improve the care of generally healthy adults by identifying predispositions for disease to facilitate targeted prevention and screening efforts, by…- Adult
- Area
- base
- behavioral response
- Benign