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Video
Engaging Participants as Partners: ELSI Considerations in Large-Scale Precision Medicine Research
To be relevant and impactful, it has become increasingly necessary for researchers to engage stakeholders outside the usual research communities, such as patients and community representatives. Yet,… -
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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
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ELSIcon2022 Paper: Investigating an Ethos of Duty in Precision Medicine Research Calls for Minority Participation
ELSIcon2022 • Paper • May 27, 2022 Rachel Bailey A rhetorical utility of identity may provide a novel method of inquiry for bioethics research. To increase diversity of Precision Medicine (PM…- Pre-Recorded
- Paper
- Motivation to participate in research
- Education and public reception of genetic science
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ELSIcon2022 Paper: When Covering and Discovering Are at Odds: How the Logic of Health Insurance Undercuts the Promise of Precision Medicine for People with Hereditary Cancer Risks
ELSIcon2022 • Paper • June 1, 2022 Mark Schlesinger, Rachel Grob, Emily Mrig The past two decades have seen significant advancement in precision medicine approaches to preventing and treating…- Live
- Paper
- Access to genetic screening and therapies
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ELSIcon2022 Paper: Mandating Diversity in the Context of Inequity: Re-examining the Research-Care Divide in Precision Medicine Research
ELSIcon2022 • Paper • June 1, 2022 Nicole Foti, Emily Vasquez, Caitlin McMahon, Sandra Soo-Jin Lee, and Janet Shim on behalf of Ethics of Inclusion Study Team There is a diversity deficit in…- Live
- Paper
- Recruiting diverse participants to precision medicine research
- genomics research
- Biobanks
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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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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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ELSIcon2022 Paper: When State Laws Conflict: Choice of Law Challenges in Multi-Site Research
ELSIcon2022 • Paper • May 31, 2022 Laura Beskow, Leslie Wolf Our previous research demonstrated that precision medicine research implicates numerous state laws, including human subjects…- Live
- Paper
- Laws and research sites
- precision medicine
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ELSI and the New Precision Stewards?
ELSIcon2022 • Pre-recorded Paper Karen Meagher, PhD - Mayo Clinic Sara Watson ELSI and the New Precision Stewards? Advances in pathogen genomics and molecular epidemiology are keeping…- Population Genetics
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ELSIcon2022 Paper: ELSI and the New Precision Stewards?
ELSIcon2022 • Paper • May 27, 2022 Sara Watson, Karen Meagher Advances in pathogen genomics and molecular epidemiology are keeping pace with next generation sequencing translational…- Pre-Recorded
- Paper
- Population screening and public health genomics
- Population Genetics