dccp-pcgdr (Agenda)

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Symposium on Personal Control of Genomic Data for Research
September 26-27, 2019, Masur Auditorium, National Institutes of Health

Day 1
8:00 - 8:30 a.m. Registration
8:30 - 8:45 a.m. Welcome and overview:
Debbie Winn, PhD, National Cancer Institute
Sean Davis, MD, PhD, National Cancer Institute

Session 1: Motivations for and perceptions of participants controlling their own data

Summary: In this session, individuals and patient advocacy groups will share their experiences, perceptions, and thoughts on controlling their own genomic data.

Session Chair: Amanda Haddock, Dragon Master Foundation

8:45 - 10:00 a.m.
  • Bill Paseman, MSEECS, MChE, Rarekidneycancer.org
  • Corrie Painter, PhD, Broad Institute, Count Me In
  • Misha Angrist, PhD, Duke, Social Sciences Research Institute
  • Manuel Corpas, PhD, Cambridge Precision Medicine
  • Amanda Haddock, Dragon Master FoundationManuel
10:00 - 10:30 a.m. Break/networking

Session 2: Facilitating personal control of data sharing-- existing approaches and platforms

Summary: This session will feature platform providers of personal genomic data sharing services along with an overview of leading enabling technologies like Blockchain. Speakers will highlight business models, consent processes, participant engagement and feedback mechanisms, and sustainability.

Session Chair: John Wilbanks, Sage Bionetworks

10:30 - 11:45 a.m.
  • Mahsa Shabani, PhD, University of Leuven
  • Adam Resnick, PhD, Children’s Hospital of Philadelphia
  • Bastian Greshake Tzovaras, PhD, Open Humans and Center for Research and Interdisciplinarity
  • Dawn Barry, LunaPBC
  • John Wilbanks, Sage Bionetworks
    11:45 a.m. - 12:30 p.m. Panel discussion: perceptions and realities for individuals to share their genomic data
    12:30 - 2:00 p.m.

    Lunch, concurrent poster viewing and networking (FAES Terrace)

    Please grab your lunch and join us on the FAES Terrace for an informal networking and poster session. There will be limited seating available on the terrace.

    2:00 - 3:00 p.m. Keynotes:
    Deven McGraw, JD, MPH, Ciitizen
    Karl Surkan, PhD, Massachusetts Institute of Technology

    Session 3: Risks and benefits to individuals and communities

    Summary: This diverse session will include a number of researchers and scholars who will present the landscape of ethical and legal protections (or lack of) for individuals, families, and communities. Additional threads will include international perspectives, interplay with citizen science efforts, and policy development efforts.

    Session Chair: Charlisse Caga-anan, JD, National Cancer Institute

    3:00 - 3:30 p.m.
    • Greg Hampikian, PhD, Boise State University, Idaho Innocence Project
    • Christi Guerrini, JD, MPH, Baylor College of Medicine
    3:30 - 3:45 p.m. Short break
    3:45 - 4:30 p.m.
    • Richard Milne, PhD, Wellcome Genome Campus
    • Michelle McGowan, PhD, Cincinnati Children’s Hospital Medical Center
    • Robert Cook-Deegan, MD, Arizona State University
    4:30-5:30 p.m. Panel discussion: risks and benefits to individuals and communities


    Day 2
    9:00 - 9:30 a.m. Keynote: Janet Freeman-Daily, MS, Eng, Lung cancer patient/activist and the ROS1ders

    Session 4: Sharing personal data in clinical practice and healthcare

    Summary: As genomic data collection and use becomes more common in clinical practice, there is a need to think of how best to apply and use these data across the diverse and distributed care network that most patients encounter. In short, can we begin to think of a longitudinal and shareable genomic health record that a patient can control and leverage to her benefit.

    Session Chair: Sean Davis, MD, PhD, National Cancer Institute

    9:30 - 10:45 a.m.
    • Jace Ward
    • Andy Faucett, MS, Geisinger, Genomic Medicine Institute
    • Casey Greene, PhD, University of Pennsylvania
    • Carly Strasser, PhD, Fred Hutchinson Cancer Research Center
    • Stacy W. Gray, MD, AM, City of Hope
    10:45 - 11:00 a.m. Short break
    11:00 - 11:30 a.m. Final panel on future challenges and opportunities for research and health
    11:30 – 12:00 p.m. Open discussion and closing