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Grant Abstract
Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI Experiment
This empirical and normative bioethics research project will guide policy and practice about the disclosure of genomic incidental findings (GIFD), a much-debated topic. With ethical guidance from a…- Advocate
- Archives
- Authorization documentation
- base
- biobank
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Grant Abstract
Ethical Legal and Social Implications Issues in Comparative Effectiveness Research
Two major forces in clinical medicine on the horizon are expected to change the paradigm of clinical care. One is personalized genomic medicine (PGM), which seeks to harness knowledge about the…- Alternative Therapies
- clinical care
- Clinical Medicine
- clinical practice
- Communities
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Grant Abstract
Genetic Education to Promote Counseling Attendance after Surgical Treatment
In 2009, 192,370 new cases of female breast cancer (BC) were diagnosed in the U.S. Of these cases, 5%- 10% were attributed to BRCA mutations. This translates to approximately 9,000 to 18,000 high-…- Anxiety
- base
- BRCA1 gene
- BRCA2 gene
- BRCA2 Mutation
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Grant Abstract
The Presumptive Case against Returning Individual Results in Biobanking Research
Genomic biobank research, like much scientific and biomedical research, aims to produce generalizable knowledge of collective benefit to humans and possibly other living organisms. Direct benefit to…- Beneficence
- biobank
- Bioethics
- Biomedical Research
- Child
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Grant Abstract
Parent Education about Newborn Screening and Bloodspot Retention
The objective of this project is to address the content, timing, efficacy, and impact of prenatal education about newborn screening generally and bloodspot sample retention specifically. This project…- authority
- Authorization documentation
- base
- Child
- Communities
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Grant Abstract
Return of Research Results from samples obtained for Newborn Screening
In order to maximize the potential benefit of research using newborn screening residual dried blood samples (DBS), a paradigm shift will be necessary to develop an infrastructure in which parental…- biobank
- Biochemical
- Bioethics
- Blood specimen
- clinical care
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Grant Abstract
Returning Research Results of Pediatric Genomic Research to Participants
The specific aim of this project is to determine what criteria should govern return of individual results of pediatric genomic research, using analysis of US law and international guidelines…- abuse neglect
- Academy
- Address
- Adult
- Affect
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Grant Abstract
Impact of return of incidental genetic test results to research participants in the genomic era
Genetic researchers are rapidly adopting methods of whole exome and whole genome sequencing to identify the hereditary bases for human disease as the cost of sequencing rapidly declines and the…- Adult
- Alzheimer's Disease
- Anxiety
- Area
- base
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Grant Abstract
Challenges of Informed Consent in Return of Data from Genomic Research
Genomic data, including findings incidental to the purpose for which a study is undertaken, can contain information of use and importance to research subjects related to their health, lifestyle, and…- Access to Information
- Address
- Adverse effects
- adverse outcome
- Alzheimer's Disease
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Grant Abstract
Returning research results in children: Parental Preferences and Expert Oversight
When individuals are queried about whether or not they wish to receive individual research results about themselves that are discovered in the course of genomic research, the majority indicate that…- adjudicate
- Agreement
- base
- Behavior
- Behavioral