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Grant Abstract
Data Release Policies for Genomics: Legal and Ethical Issues
A significant number of NIH-funded projects are under the jurisdiction of an explicit data release policy. Such projects include: any project with direct costs of more than $500,00 per year, any…- Communities
- confidentiality
- Confusion
- Consent
- Data
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Grant Abstract
Center for ELSI Research on Psychiatric Neurologic and Behavioral Genetics
Research on the genetics of Psychiatric, Neurologic, and Behavioral (PNB) phenotypes reveals a panorama of complexity that creates several challenges: 1) the data are difficult for clinicians to…- Affect
- Area
- base
- Behavior Disorders
- Behavioral
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Grant Abstract
Assessing the Use and Understanding of Certificates of Confidentiality
Researchers and institutions are ethically and legally obligated to safeguard research participants' privacy and the confidentiality of their data. Indeed, the success of the research enterprise…- Certificate of Confidentiality
- confidentiality
- Counseling
- court
- Data
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Grant Abstract
Response to Testing Among Individual Consumers of DTC Personal Genomics Services
Results from several genome-wide association (GWA) studies have recently emerged showcasing the discovery of specific genetic variations found to be associated with several common, complex diseases.…- Anxiety
- Attitude
- base
- Behavior
- behavior change
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Grant Abstract
Conceptions of Race and Ethnicity Used in Gene-Environment Interaction Studies
This qualitative, ethnographic project addresses a "Grand Challenge" for the future of genomic research and a NHGRI ELSI Research Program priority area: the analysis of the impact of…- Applications Grants
- Area
- Area Analyses
- base
- Behavioral Genetics
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Grant Abstract
Human Geneticists' Practices Preferences and Beliefs about Biobanks and Large Cohort Studies
Biobanks that collect and store participants' clinical and genetic information have become important tools in genomic research, disseminating data to a large number of investigators conducting…- American
- Area
- Attitude
- Authorization documentation
- base
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Grant Abstract
Impact of Direct to Consumer Genetic Testing
The rapid identification of genetic risk factors for common, complex diseases poses great opportunities and challenges for public health. Genetic information is increasingly being utilized as part of…- Ally
- Alzheimer's Disease
- Area
- Arthritis
- Authorization documentation
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Grant Abstract
Research Participant Protections in Rural America
This qualitative study is designed to examine the ethical conduct of clinical research, including the conduct of clinical trials, in rural healthcare settings. This study is of great significance…- Academic Medical Centers
- Address
- Adherence
- Administrator
- American Heart Association
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Grant Abstract
From Specimen to Biobank: Using an Organizational Perspective to Study ELSI Issue
This research project will collect and analyze qualitative and quantitative data about US biobanks, exploring how organizational strategies, features, and attributes affect both framing and response…- Administrator
- Adopted
- Adoption
- Affect
- Area
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Grant Abstract
Ethics of Dissemination: Communicating with Participants about Genetics Research
Biomedical research involving humans generates results that fall on a continuum of potential interest to participants. Some results, such as blood pressure, have obvious clinical utility, and…- Alaska
- Alaska Native
- arm
- base
- Behavioral Genetics