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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.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 67 Research Tools
-
The Genetics of Alzheimer's (Video)
Year: 2010This short (3 minute) English language video provides information on Alzheimer's disease, including its genetic component.
Research Population: Adults, AdolescentsContact: [email protected] -
Clinical Broad Data Sharing Consent Video, Clinical Genome Resource (ClinGen)
Year: 2017The 10 minute video explains key concepts outlined in the Consent to Share Genetic and Health Information form.
Research Population: AdultsContact: [email protected] -
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] -
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] -
8 Consent Scenarios for a Precision Medicine Cohort Study
Year: 2016These eight consent scenarios that describe consent and data sharing arrangements were used to assess respondents' opinions of the conduct of a precision medicine cohort study on genes and env
Research Population: AdultsContact: [email protected] -
Educational Video on Expanded Carrier Screening (ECS) & Autosomal Recessive (AR) Disorder
Year: 2020Conjin 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 (Sanfili
Research Population: AdultsContact: [email protected] -
(4) Narrated Slideshow Videos: Introduction to Gene Drive Technologies for Lay Audiences
Year: 2020Schairer and colleagues created 4 Narrated Slideshow Videos that provide an introduction to gene drive technologies for lay audiences. Each narrated video is between 5-6 minutes.
Research Population: AdultsContact: [email protected] -
Intro to Consent Video for American Indian and Alaska Native Participants, All of Us Research Program
Year: 2018This 28 second video for American Indian and Alaska Native participants briefly introducs the concept of consent.
Research Population: AdultsContact: [email protected]