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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
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Video
Part 1. Ethical, Legal and Social Implications (ELSI) on the Frontiers of Precision Medicine Research at National Scale: Experiences of the NIH All of Us Research Program
Katherine D. Blizinsky, PhD - National Institutes of Health ELSIconversations - April 16, 2021 The NIH All of Us Research Program (AoURP) aims to collect genomic, biological, environmental, and…- precision medicine research
- precision medicine
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Video
Part 2. Ethical, Legal and Social Implications (ELSI) on the Frontiers of Precision Medicine Research at National Scale: Experiences of the NIH All of Us Research Program
Subhashini Chandrasekharan, PhD and Katherine D. Blizinsky, PhD - National Institutes of Health ELSIconversations - April 16, 2021 The NIH All of Us Research Program (AoURP) aims to collect genomic…- precision medicine
- precision medicine research
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Video
Developing Pathways for Community-led Research with Big Data: A Content Analysis of Stakeholder Interviews
Megan Doerr, MS, LGC - Sage Bionetworks & Joon-Ho Yu, MPH. PhD - University of Washington ELSIconversations - March 5, 2021 Big data (BD) informs nearly every aspect of our lives and, in health…- Big Data
- Community Engagement
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Video
A Qualitative Study to Develop a Privacy and Nondiscrimination Best Practice Framework for Personalized Wellness Programs
Rachele Hendricks-Sturrup, DHSc, MSc, MA - Harvard Pilgrim Health Care Institute and Harvard Medical School ELSIconversations - February 26, 2021 Employers are increasingly partnering with direct-…- Direct to Consumer Genetic Testing
- direct to consumer marketing
- Wellness programs
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Video
Democratic approaches to precision medicine and genetics research: comparing inclusiveness and effectiveness of PPI practices to the pursuit of the public good
Ilaria Galasso, PhD - University College Dublin ELSIconversations - March 5, 2021 In this paper we scrutinize emerging public involvement practices as a response to the major ELSI challenges around…- precision medicine research