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Returning Individual Research Results to Participants Guidance for a New Research Paradigm (2018) / Chapter Skim
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Appendix B: Public Agendas
Pages 289-294

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From page 289...
... Presentation by Sponsors: Stephanie Devaney, National Institutes of Health Adam Berger, Food and Drug Administration Karen Dyer, Centers for Medicare & Medicaid Services 2:00–2:45 p.m. Sponsor Q&A with Committee Moderator: Jeffrey Botkin, Committee Chair 2:45 p.m.
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From page 290...
... Session 1: Participant and Community Perspectives Moderator: Gregg Gonsalves, Committee Member Fran Visco, President, National Breast Cancer Coalition Ellen Wagner, Board of Directors, Parent Project Muscular Dystrophy Chioma Nnaji, Program Director, Multicultural AIDS Coalition 10:15–10:30 a.m. BREAK 10:30 a.m.– Session 2a: Perspectives of Researchers and Laboratorians 12:00 p.m.
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From page 291...
... Wolf, McKnight Presidential Professor of Law,  Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine; University of Minnesota Law School, Medical School, and Consortium on Law and Values in Health, Environment & the Life Sciences David J Peloquin, Associate, Ropes & Gray LLP Sally Howard, Head of Regulatory Affairs and Policy and Chief Privacy Officer, Human Longevity, Inc.
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From page 292...
... Welcome and Opening Remarks Jeffrey Botkin, Committee Chair 8:15–9:45 a.m. Session 5: Communicating Results to Meet User Needs Moderator: Consuelo Wilkins, Committee Member Sally Okun, Vice President for Policy and Ethics, PatientsLikeMe Julia Wynn, Senior Genetic Counselor and Clinical Research Manager, Columbia University Medical Center Sara Czaja, Leonard M
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From page 293...
... ADJOURN Open Session Public Webinar December 7, 2017 90-Minute Webinar 2:00–3:30 p.m. Quality Standard for Regulated and Non-Regulated Biomedical Research Laboratories Moderator: Debra Leonard, Committee Member Rebecca Davies, University of Minnesota Randy Querry, American Association for Laboratory Accreditation
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From page 294...
... 294 RETURNING INDIVIDUAL RESEARCH RESULTS TO PARTICIPANTS Fourth Committee Meeting Community and Participant Perspectives -- Public Webinar December 11, 2017 Arnold and Mabel Beckman Center 100 Academy Drive, Irvine, CA 3:30–6:30 p.m. Community and Participant Perspectives -- Public Webinar John Molina, Native Health, Phoenix Sonja Fuqua, Jackson Heart Study Participant and Community Health Advisor Crispin Goytia-Vaquez, Mount Sinai Centers for Community and Academic Research Partnerships Matthew Rose, National Minority AIDS Council Lisa Schlager, Facing Our Risk of Cancer Empowered Stephen Mikita, Aspirin in Reducing Events in the Elderly
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Key Terms

  • jeffrey botkin
  • project muscular
  • parent project
  • opening remarks
  • ellen wagner

  • committee chair
  • genetic counselor
  • baker daniels
  • stephanie devaney
  • chief commons

  • john wilbanks
  • biological materials
  • care institutions
  • biobank biological
  • miami miller

  • mcknight presidential
  • sage bionetworks
  • julia wynn
  • anschutz medical
  • presidential professor

  • carolyn compton
  • becker green
  • center director
  • sally howard
  • breast cancer

  • arizona state
  • chioma nnaji
  • multicultural aids
  • joanne murabito
  • genome research


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