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Grant Abstract
ELSI Scale-Up: Large Sample Gene Discovery & Disclosure
This proposal rests on the assumption that rapid expansion of large sample gene discovery and disclosure projects raise major ethical, legal, social and policy challenges, to such an extent that it…- behavioral /social science research tag
- Clinical Research
- confidentiality
- Ethics
- Genetic Screening
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Grant Abstract
Social Construction of Benefit in Gene Transfer Research (II)
Patients with serious disease who are potential research subjects are routinely described as "vulnerable"and as disproportionately anticipating direct benefit from participation in early-…- behavioral /social science research tag
- Clinical Research
- Comprehension
- Ethics
- gene therapy
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Grant Abstract
Coping with Genetic Risk for Breast and Ovarian Cancer
This study will examine the efficacy of brief, nurse-delivered counseling intervention, Stress Inoculation Therapy (SIT), on the enhancement of psychological adjustment to the receipt of genetic…- brca gene
- breast neoplasms
- cancer prevention
- cancer risk
- coping
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Grant Abstract
Developing and Evaluating Patient Centered Tools for Clinical Classification of Variants of Uncertain Significance
Targeted gene sequencing using large panels has become an increasingly important strategy for evaluating disease risk for many inherited diseases. Expanded gene panels are more sensitive than single…- Arrhythmia
- base
- Benign
- Cardiomyopathies
- Characteristics
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Grant Abstract
A Genetic Screening Policy Model for Colorectal Cancer
As our knowledge of the role of genetic and environmental factors in colorectal cancer grows, population screening and prevention efforts can be modified to incorporate this information. The goal of…- cancer registry /resource
- cancer risk
- case history
- Clinical Research
- Colorectal Neoplasms
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Grant Abstract
Interdisciplinary Center on Epigenetics Science and Society
One of the intended goals of the ELSI CEER program is to provide guidance on policy issues that arise from novel genetic and genomic science and applications. This focus, however, misses epigenetic…- base
- Behavior
- Cancer Diagnostics
- cancer therapy
- Cells
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Grant Abstract
Testing and Counseling for Cystic Fibrosis Mutations
This project will evaluate CF carrier screening during pregnancy as perceived by the patient, partner, and provider and assess the impact on health costs through analysis of cost-effectiveness. The… -
Grant Abstract
Update and Dramatization of a Genetics Curriculum
In 1987 the Education Division of the Foundation for Blood Research developed, field tested, and distributed a human genetics curriculum unit for high school biology classes. The unit, titled '…- curriculum
- disease /disorder Prevention /control
- Ethics
- gene therapy
- Genetic Counseling
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Grant Abstract
Surfacing values in the economic evaluation of genomic sequencing for diagnosis of children with rare diseases
PROJECT NARRATIVE Though any single rare disease is by definition uncommon, together these diseases affect nearly 30 million individuals in the United States, two-thirds of whom are children, and…- Affect
- Anthropology
- base
- Bioethics
- career
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Grant Abstract
Predicting Future Disease: Issues in the Development, Application, and Use of Tests for Genetic Disorders
The Institute of Medicine (IOM) through its Board on Health Sciences Policy established a panel of experts to evaluate issues in the development, application, and use of tests for genetic disorders.…