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Research Tool
Consent Preferences of UK Research Volunteers for Genetic and Clinical Studies Survey
This survey assesses views on aspects of the consent process, including willingness to share medical information and DNA for different research purposes, including controversial areas of research. -
Research Tool
CSER Phase 1: Genetic Information Nondiscrimination Act (GINA) Fact Sheet: "GINA & You"
This fact sheet describes the rights protected by the Genetic Information Nondiscrimination Act of 2008 in an easy to read format. -
Research Tool
CSER Phase 1: Research Participant's Authorization to Disclose/Release Genetic Information - The NEXT (New EXome Technology in Medicine) Medicine Study
The Research Participant's Authorization to Disclose/Release Genetic Information Form for the NEXT (New EXome Technology in Medicine) Medicine Study authorizes the principal investigator of the… -
Research Tool
CSER Phase 1: Consent Form: (Adult Subject) Relatives of a Study Subjects - NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis and Research
This consent form from the NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis study is designed for the adult relatives of NCGENES study participants with a genetic test result… -
Research Tool
Inteview Guide: Knowledge and Attitudes about Privacy and Secondary Data Use among African-Americans Using Direct-to-Consumer Genetic Testing
Ziegler and colleagues developed this semi-structured, qualitative, interview guide to elicit perspectives from Black/African-American participants on direct-to-consumer genetic testing. Topics… -
Research Tool
CSER Phase 1: Assent Form: (Ages 7-14) Relatives of a Study Subjects - NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis and Research
This assent form from the NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis study is designed for the 7 - 14 year old relatives of NCGENES study participants with a genetic test… -
Research Tool
CSER Phase 1: Assent Form: (Ages 15-17) Relatives of a Study Subjects - NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis and Research
This assent form from the NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis study is designed for the adolescent (aged 15-17) relatives of NCGENES study participants with a genetic… -
Research Tool
CSER Phase 1: Parental Consent for Child to Participate in a Research Study, Minor Subjects- Relatives of Study Subject - NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis and Research
This parental consent form from the NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis study is designed for the minor relatives of NCGENES study participants that received a… -
Research Tool
Preferences for the Provision of Whole Genome Sequencing Services Among Young Adults
This survey was designed for use with the 10-minute video, Whole Genome Sequencing and You (available in this database). It can be used to collect demographic information and participant attitudes… -
Research Tool
Genomics ADvISER
Genomics ADvISER is a digital decision aid for use in the delivery of genomic counseling. It is intended as a supplement to genomic counseling with a counselor. Genomics ADvISER guides users through…