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Research Tool
CSER Phase 1: Informed Consent Form and HIPAA Authorization - PediSeq: The Pediatric Genetic Sequencing Project
The purpose of PediSeq: The Pediatric Genetic Sequencing Project was to identify best practices for educating patients about exome and genome sequencing, determining the sequencing data relevent to… -
Research Tool
CSER Phase 1: Consent Form - ClinSeq : A Large-Scale Medical Sequencing Clinical Research Pilot Study
This consent form for adult patients or parents of minor patients (with child assent) includes standard consent language and the ability for participants to “opt out” of learning about genome… -
Research Tool
Genetic Literacy Fast Test (GeneLiFT)
The Genetic Literacy Fast Test (GeneLiFT) is a self-administered genetic literacy test for individuals who intend to undergo genetic screening with return of results. -
Research Tool
Genetic Essentialism Scale for Race (GESR)
The Genetic Essentialism Scale for Race (GESR) measures beliefs about the relationship between genes and race with 15 items. Please see Table 1 of linked article by Yaylacı and colleagues for… -
Research Tool
CSER Information Seeking Measure
The CSER Information Seeking Measure (two versions) is a single-item measure that assesses the sources of information that patients think they will be likely to use to obtain further information… -
Research Tool
CSER Phase 1: Physician Consent Form - Incorporation of Genomic Sequencing into Pediatric Cancer Care Study
This physician 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… -
Research Tool
Making improvements in hospital care survey
The Making Improvements in Hospital Care Survey is a 32-item survey instrument designed to measure patient preferences for consent to non-invasive, quality improvement interventions in the hospital… -
Research Tool
Instrument for assessing mass media reporting of disease-related genetic discoveries
Instrument for assessing mass media reporting of disease-related genetic discoveries is a 38-item tool for evaluating the quality and balance of media stories reporting genetic discoveries related to… -
Video
Sexual and Gender Minorities’ Perspectives on Genetic Privacy and Identity in Research
Catherine Hammack-Aviran, MA, JD - Vanderbilt University Medical Center ELSIconversations - March 5, 2021 Sexual orientation and gender identity minorities (SGMs) suffer significant health…- genetic privacy
- Minority Groups
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Video
Platform Heals? Ethical Issues in Direct-to-consumer Telepharmacies
Ben Wills - The Hastings Center ELSIconversations - February 26, 2021 Healthcare is in the middle of a dramatic revolution. Hims, Hers, Roman, Nurx, LemonAid, and The Pill Club are start-ups…- direct to consumer marketing
- Direct to Consumer Genetic Testing
- telemedicine
- Healthcare