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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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What does ‘respect for persons’ really mean? Practical considerations for demonstrating respect in genomics research
Stephanie Kraft, JD - University of Washington ELSIconversations - March 5, 2021 Demonstrating respect for research participants is not only an ethical imperative but, if done effectively, it may…- Community Engagement
- Research Recruitment
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When Dogs Play Cards: Interviews with Scientists, Researchers, and Oversight Committee Members on Ethical Guidelines for Human-Animal Chimera Research
Kaitlynn Craig, MA - Case Western Reserve University ELSIconversations - March 19, 2021 Advances in human stem cell science along with gene editing techniques enable scientists to more effectively…- human-chimera research
- ethical guidelines
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Which Public, What Comments? An Analysis of Public Comments on Human-Animal Chimera Research Submitted to the National Institutes of Health
Ben Wills - The Hastings Center ELSIconversations - March 19, 2021 Background: In 2016, the National Institutes of Health (NIH) solicited public comments regarding a proposal to cease funding…- human-chimera research
- public attitudes
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Patient and family preferences on direct contact by a health system to invite cascade screening
Nora Henrikson, PhD, MPH - Kaiser Permanente and University of Washington ELSIconversations - March 26, 2021 Background. Cascade screening is key to the promise of precision medicine, but…- Cascade screening
- Patient Preferences
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Defining the Critical Components of Informed Consent for Genetic Testing
Kelly Ormond, MS, CGC - Stanford University ELSIconversations - March 26, 2021 The Consent And Disclosure Recommendations (CADRe) workgroup within ClinGen (Clinicalgenome.org) consortia has been…- Genetic Testing
- Informed Consent
- clinical genetics
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Racial and Ethnic Classification in the Clinic: Is it Just?
Natalie Pino, BA - National Human Genome Research Institute ELSIconversations - March 26, 2021 The United States has a long history of institutionally classifying people by racial and ethnic (R/E)…- racial /ethnic difference
- race and genetics
- clinical challenges
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Human Germline Genome Editing and the Identity Politics of Genetic Disability
Felicity Boardman, PhD - University of Warwick ELSIconversations - April 2, 2021 The intersection of human germline genome editing with identity politics has a range of implications for the…- human germline genome editing
- Personal Identity
- genetic disability
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Direct-to-Consumer Genetic Testing: Public Perspectives and Considerations Regarding Ancestry and Kinship
Catherine Hammack-Aviran, MA, JD - Vanderbilt University ELSIconversations - April 2, 2021 Direct-to-consumer (DTC) genetic testing is transforming how people view their individual, familial, and…- direct-to-consumer genetic testing
- ancestry
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