Discover data collection instruments and related materials in the Research Tools database. Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
21 - 30 of 34 Research Tools
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CSER Phase 1: Research Participant's Authorization to Disclose/Release Genetic Information - The NEXT (New EXome Technology in Medicine) Medicine Study
Year: 2013The 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 th
Research Population: Adults -
CSER Phase 1: Parent Consent Form - Incorporation of Genomic Sequencing into Pediatric Cancer Care Study
Year: 2016This parent consent form was approved by the Institutional Review Board for the Baylor College of Medicine and Affiliated Hospitals for use in the Incorporation of Genomic Sequencing into Pediatric
Research Population: Parents -
CSER Phase 1: Patient Consent Form - Incorporation of Genomic Sequencing into Pediatric Cancer Care Study
Year: 2016This patient consent form was approved by the Institutional Review Board for the Baylor College of Medicine and Affiliated Hospitals for use in the Incorporation of Genomic Sequencing into Pediatri
Research Population: Parents -
CSER Phase 1: Cardiologist Consent Form - The MedSeq™ Pilot Project: Integrating Whole Genome Sequencing into Clinical Medicine
Year: 2010The purpose of the MedSeq Project was to develop a process for a process for integrating information obtained from whole genome sequencing into clinical practice and to explore how physicians and t
Research Population: Physicians -
CSER Phase 1: Parent Consent Form - Incorporation of Genomic Sequencing into Pediatric Cancer Care Study
Year: 2016This parent consent form was approved by the Institutional Review Board for the Baylor College of Medicine and Affiliated Hospitals for use in the Incorporation of Genomic Sequencing into Pediatric
Research Population: Parents -
Scenarios for Ethical and Legal Analysis of Genomic Data Sharing Practices
Year: 2020McWhirter and colleagues report the development and validation of 6 scenarios based on actual genomic data sharing pratices in Australia.
Research Population: AdultsValidation(s):McWhirter, R., Eckstein, L., Chalmers, D., Critchley, C., Nielsen, J., Otlowski, M., & Nicol, D. (2020). A scenario-based methodology for analyzing the ethical, legal, and social issues in genomic data sharing. Journal of Empirical Research on Human Research Ethics, 15(4), 355-364.
Contact: [email protected] -
Scenarios on Genetic Research, Testing, and Return of Results
Year: 2020Hiratsuka and colleagues developed these six scenarios for use in small group discussions focused on their implications.
Research Population: Alaska Native and American Indian AdultsContact: [email protected] -
Research Scenarios Associated with Moral Concerns
Year: 2016In the linked study, De Vries and colleagues provided participants with a description of a fictional biobank and a description of blanket consent.
Research Population: AdultsContact: [email protected] -
Social Policy Options forBiobank Consent
Year: 2016In the linked study, De Vries and colleagues provided participants with a description of a fictional biobank and a description of blanket consent.
Research Population: AdultsContact: [email protected] -
Genomic Data Governance Policy Statements
Year: 2020In the original study, Briscoe and colleagues asked participants how each of twelve, randomly ordered policies (e.g., employee code of conduct, right to request deletion of data, warrant protection
Research Population: AdultsContact: [email protected]