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 Please see our FAQ to learn more and email us at [email protected] to contribute your published or unpublished research tools.
11 - 20 of 60 Research Tools
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Security and Privacy (Video), The VALUES Project, The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research
Year: 2018This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research.
Research Population: AdultsContact: [email protected] -
Consent (Video), The VALUES Project, The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research
Year: 2018This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research.
Research Population: AdultsContact: [email protected] -
Oversight (Video), The VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research
Year: 2018This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research.
Research Population: AdultsContact: [email protected] -
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]