Genetic Privacy and Identity in Community Settings - GetPreCiSe

NIH May 16, 2016 | RM1

Genetic Privacy and Identity in Community Settings - GetPreCiSe

Principal Investigator(s): CLAYTON, ELLEN W, MALIN, BRADLEY A. (contact);

Institution: VANDERBILT UNIVERSITY MEDICAL CENTER

FOA Number: RFA-HG-19-012

Abstract

The incorporation of genetics and genomics into medical care and the public domain raises new challenges for how we understand privacy and identity, concepts that have long been closely linked in American discourse. The Genetic Privacy and Identity in Community Settings (GetPreCiSe), an NHGRI Center of Excellence in Ethical, Legal, and Social Implications Research (CEER) will 1) characterize how social practices and genetic data access affect notions of genetic privacy and identity, 2) assess the impact of emerging laws and regulatory frameworks in the US and abroad, and 3) gauge how new technologies compromise but also uphold protections.

FUNDING AGENCY:

Funder:
NIH

Institute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTE

Funding Type:
RM1

Project Number:
RM1HG009034

Start Date:
May 16, 2016

End Date:
Jun 30, 2024

PROJECT TERMS:

Address, Advertising, Affect, Age, All of Us Research Program, American, Area, Artificial intelligence, Arts, base, Behavior, behavior influence, behavioral economics, Big Data, blockchain, California, Caring, CCL4 gene, Clinical, Clinical Research, cohort, Communities, community setting, computerized data processing, Conceptions, Conflict (Psychology), Data, data access, Data Collection, data privacy, data protection, data security, data sharing, Deposition, design, Development, Electronic Health Record, Engineering, Environment, ethical legal social implication, European Union, Family, Film, Gender, Genetic, genetic identity, genetic information, Genetic Models, genetic privacy, Genetic study, genetic testing, genomic data, Genomics, Growth, Health, Imagination, Individual, Infrastructure, innovation, insight, interest, International, Internet, Investigation, Knowledge, Law Enforcement, Laws, Legal, legal implication, Link, Literature, Medical, Methods, minimal risk, Modeling, multidisciplinary, multimodality, National Human Genome Research Institute, new technology, news, Newspapers, next generation, Participant, Perception, Policies, Privacy, Provider, Public Domains, Publications, Race, Radio, Regulation, Research, Research Personnel, Risk, Role, Seeds, Services, sex, social, social media, Social Network, Social Sciences, Societies, Technology, Television, Testing, Time, Training, United States, United States National Institutes of Health, Use of New Techniques, Visual

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Genetic Privacy and Identity in Community Settings - GetPreCiSe

Abstract

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