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ELSIcon2022 Paper: Supporting Shared Decision Making for Parents of Infants/Young Children with Disorders/Differences of Sex Development: Creation of a Genetic Testing Decision Aid
ELSIcon2022 • Paper • June 2, 2022 Sophie Lightfoot, Melissa Gardner, Meg Carley, Larry Gruppen, Lauren Mohnach, Jodie Johnson, Dawn Stacey, David Sandberg, Kristina Suorsa-Johnson…- Live
- Paper
- tools
- Genetic testing and screening
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ELSIcon2022 Paper: The Sangre Por Salud Community Advisory Board: Enhancing Genomic Medicine Research within a Latino-serving Federally Qualified Health Center.
ELSIcon2022 • Paper • June 2, 2022 Valentina Hernandez, Davinder Singh, Iftikhar Kullo, Elena De Filippis, Karen Meagher, Sara Watson, Richard Sharp, Gabriel Shaibi, Crystal Gonzalez…- Live
- Paper
- Community oversight of research
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ELSIcon2022 Paper: Translating Genomic Science: How Genetic Counselors Navigate Ethical and Professional Dilemmas in the 21st Century
ELSIcon2022 • Paper • June 2, 2022 Susan Markens With the acceleration of new genetic discoveries and testing techniques in the first decades of the twenty-first century, genomic technologies…- Live
- Paper
- Genetic Counseling
- Genetic testing and screening
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ELSIcon2022 Panel: Voluntary Genetic Testing in the Workplace: An ELSI Analysis
ELSIcon2022 • Panel Session 14 • June 2, 2022 J. Scott Roberts, Anya Prince, Debra Mathews, Wendy Uhlmann Over 150 million people in the US receive their health care through employer-…- Live
- Panel
- Stigma and discrimination
- Genetic testing and screening
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ELSIcon2022 Paper: Cultivating just & equitable genomics research partnerships with community health centers
ELSIcon2022 • Paper • June 2, 2022 Johanna Crane, Carolyn Neuhaus Research partnerships with community health centers serving ethnically and economically diverse communities present an…- Live
- Paper
- health disparities
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ELSIcon2022 Paper: Is it just for a screening program to give people all the information they want?
ELSIcon2022 • Paper • June 2, 2022 Lisa Dive, Ainsley Newson What normative role should people’s preferences should play in determining access to genomic information, particularly in relation…- Live
- Paper
- Return of Results
- Genetic testing and screening
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ELSIcon2022: Paper Session 12
ELSIcon2022 • Paper Session 12 • June 2, 2022 Includes discussion material from Carolyn Neuhaus, Johanna Crane, Marilyn Baffoe-Bonnie, K. Jameson Floyd, and Michelle Nichols.- Live
- Paper
- Health Disparities
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ELSIcon2022 Paper: Participation in Sickle Cell Disease Clinical Research: How the Lived Experience Shapes Altruism
ELSIcon2022 • Paper • June 2, 2022 Marilyn S. Baffoe-Bonnie Recruiting participants for clinical studies is an essential component of biomedical research, and appealing to individuals’ altruism is…- Live
- Paper
- Motivation to participate in research
- Health Disparities
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ELSIcon2022 Paper: Return of Secondary Genomic Findings: Experiences of Sickle Cell Disease Research Participants
ELSIcon2022 • Paper • June 2, 2022 K. Jameson Floyd, Ashley Buscetta, Vence Bonham While the body of research investigating research participants’ views on the return of actionable…- Live
- Paper
- Return of Results
- health disparities
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ELSIcon2022 Paper: The Ethical, Legal, and Social Implications of Stroke Genomic and Biobanking Research in Sub-Saharan Africa: Community Member Perspectives and Factors for Consideration
ELSIcon2022 • Paper • June 2, 2022 Michelle Nichols, Arti Singh, Olorunyomi Olorunsogbon, Ezinne Uvere, Mayowa Ogunronbi, Sylvia Melikam, Joshua Akinyemi, Kolawole Wahab, Albert Alpalu, Fred S…- Live
- Paper
- Attitudes about sharing biological samples and health data