1 - 10 of 863

Grant Abstract

A Sociotechnical Approach to Improving Security and Privacy in the Genomic Data Ecosystem

PROJECT SUMMARY/ABSTRACT The dream of open science for genomics is hindered by concerns about genomic data re-identification and the resulting restrictive data access protocols. The long-term goal is…

Grant Abstract

An ELSI-Integrated Evaluation of the Family-Level Utility of Pediatric Genomic Sequencing

PROJECT SUMMARY/ABSTRACT Substantial resources have been devoted to policy evaluation of clinical genomic sequencing that hinge on the conceptualization and measurement of utility. However, most…

Research Tool

Genetics Post-Course Survey (Genotype Data)

Salari and colleagues designed this survey to measure student attitudes and knowledge about genomics and personalized medicine after taking an 8-week course on genomics and personalized medicine.…

Research Tool

Awareness and Purpose of Genetic Counseling Survey

Maio and colleagues designed this survey to measure awareness and perceptions of the purpose of genetic counseling. See the methods section and table 1 of the linked article for the survey questions…

Research Tool

Educational Video on Expanded Carrier Screening (ECS) & Autosomal Recessive (AR) Disorder

Conjin and colleagues created this brief educational video on autosomal recessive inheritance, the expanded carrier screening (ECS) test, reproductive options, and a description of MPS III (…

Research Tool

Educational Text on Expanded Carrier Screening (ECS) & Autosomal Recessive (AR) Disorder

Conjin and colleagues created this brief online written educational summary on autosomal recessive inheritance, the expanded carrier screening (ECS) test, reproductive options, and a description of…

Research Tool

Genetic Knowledge Test (Carrier Status, Autosomal Recessive Disorders, Expanded Carrier Screening)

Conjin and colleagues created this brief knowledge test to measure the effect of an educational video compared to an educational text. The educational text, video, and questionnaire used in this…

Research Tool

Expanded Carrier Screening Questionnaire

Conjin and colleagues created this questionnaire to assess genetic knowledge, the perceived severity of MPS III (Sanfilippo disease), perceived risk, and attitudes toward expanded carrier screening (…