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Grant Abstract
Informed Consent and Data Access Issues in State-based Biobanks
The ethical, legal, and social issues (ELSI) underlying the development and implementation of state-sponsored birth cohort studies and their accompanying biobanks are complex and potentially volatile…- Adult
- Affect
- Anxiety
- Area
- Attitude
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Grant Abstract
Genetic Privacy and Identity in Community Settings - GetPreCiSe
Concerns about privacy and personal identity impede use of data about genomic variation, phenotypes, demographics, and exposures from large numbers of people to uncover the contributions of such…- Attitude
- Automobile Driving
- base
- Belief
- Benefits and Risks
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Publication
Banking biological collections: Data warehousing, data mining, and data dilemmas in genomics and global health policy
Community GeneticsDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National… -
Publication
Summary of the experiences, knowledge, medical management, and family communication of monoallelic MUTYH carriers
Journal of Genetic Counseling -
Research Tool
Sharing Power with Communities in Priority-Setting for Health Research Projects: A Toolkit
Pratt developed Sharing Power with Communities in Priority-Setting for Health Research Projects (a set of four worksheets and a companion document available in this database), following consultation… -
Publication
Germany may relax genome data policy
ScienceDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National… -
Publication
Consideration of bias in data sources and digital services to advance health equity
Journal of the American Medical Informatics Association -
Collection
Privacy, Security, and Nondiscrimination Best Practices for Direct-to-Consumer (DTC) Genetic Testing Companies
The completion of the Human Genome Project opened new doors for business enterprise. One such activity is direct-to-consumer (DTC) genetic testing, or genetic testing offered on a service-driven…- data privacy
- direct-to-consumer genetic testing
- GINA
- genetic discrimination