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Grant Abstract
Interactive multimedia consent for biobanking
Interactive Multimedia Consent for Biobanking Abstract Many biobanks in the U.S. consent thousands of contributors of biospecimens and health information. There is growing interest in the efficiency…- biobank
- Caucasians
- Cognition
- Communities
- compare effectiveness
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Grant Abstract
Goals and Practices for Next Generation Prenatal Testing
Prenatal testing is evolving in two important ways: first, advances in genomic medicine mean that samples of fetal DNA obtained with invasive methods (such as amniocentesis) can be analyzed using…- Amniocentesis
- Aneuploidy
- Arts
- Birth
- Blood
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Grant Abstract
The Electronic Medical Records and Genomics (eMERGE) Network Phase III - Coordinating Center
The eMERGE project brings together researchers with a wide range of expertise in genomics, statistics, ethics, informatics, and clinical medicine from leading medical research institutions across…- Agreement
- Algorithms
- Arbitration
- biobank
- clinical implementation
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Grant Abstract
The Effect of Electronic Informed Consent Information (EICI) on Residual Newborn Specimen Research
Obtaining adequate informed consent from potential research participants is a significant challenge for biobank-dependent research. To maintain public trust and support, it is important to establish…- Attitude
- Authorization documentation
- Award
- base
- biobank
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Grant Abstract
Impact of Psychiatric Genetic Data on Civil Litigation and its Relationship with Stigma
Advances in psychiatric genetics are likely to offer major diagnostic and therapeutic benefits, but also legal and social-related risks, to individuals who were diagnosed with, or have a proclivity…- Address
- Advocate
- Affect
- Area
- Attitude
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Grant Abstract
Impact of Privacy Environments for Personal Health Data on Patients
A big data ecosystem is evolving in our society in which people may have, or feel they have, little control over the flow of their personal health information, and thus their privacy. Further,…- Adult
- Affinity
- Area
- base
- Behavioral
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Grant Abstract
Community-Based Evaluation of APOL1 Genetic Testing in African Americans
Endstage renal disease (ESRD) or kidney failure affects over 500,000 persons in the United States and disproportionately affects racial and ethnic minority populations. Compared to whites, African…- advocacy organizations
- Affect
- African American
- Age
- Anxiety
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Grant Abstract
Building the Medical Information Commons: Participant Engagement and Policy
Many national and international public and private initiatives are forming to collect and share data on a large scale for research and clinical use. Collectively, these efforts may lead to the…- Affect
- Clinical
- clinical application
- Data
- data sharing
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Grant Abstract
Use of Genetic Information by Life, Long-term Care, and Disability Insurers: Exploring International Lessons, the Domestic Legal
This project employs multiple methods and a transdisciplinary approach to explore policy options for US federal and state governments seeking to address how life, long-term care, and disability…- Advocacy
- Affect
- Area
- Australia
- Case Study
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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