Symposium on Personal Control of Genomic Data for Research

September 26, 2019 - September 27, 2019
NIH Main Campus, Masur Auditorium

The landscape of genomic medicine is rapidly evolving and includes direct access to low-cost genomic sequencing through direct-to-consumer genetic testing and commercial services providing sequencing and interpretation. Increasingly, individuals want to share their genomic data and associated clinical information for research purposes. Several models exist to enable personal control of sharing of genomics data. For individuals who want to make their personal genomic data available for research or third parties for analysis or interpretation, little support exists to answer questions, provide technical support, or give feedback on the value of their data. 
Under the auspices of the Cancer Moonshot℠, NCI welcomes advocates, policy leaders, and the public to participate in a two-day, multisession workshop to explore the impact of personal control of genomic data sharing to research, clinical care, and participants well-being and engagement.
The symposium will host sessions on the following topics:

  • Motivations for and perceptions of participants controlling their own data
  • Facilitating personal control of sharing data: existing approaches and platforms
  • Risks and benefits to participants and their communities
  • Sharing data in healthcare settings – the role of individuals who wish to share their data

For questions regarding the symposium, email NCIParticipantShareData@mail.nih.gov.

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Master List of Videos

To search through the collection of recorded video presentations from the symposium, visit the playlist of YouTube playlist or click on the "View the video recording" links within the agenda below for a specific presentation.

Agenda

Day 1

8:00 – 8:30 a.m. Welcome

View the video recording
8:45 – 10:00 a.m.

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

Speakers:

  • Bill Paseman, MSEECS, MChE, Rarekidneycancer.org
  • Corrie Painter, Ph.D., Broad Institute, Count Me In
  • Misha Angrist, Ph.D., Duke, Social Sciences Research Institute
  • Manuel Corpas, Ph.D., Cambridge Precision Medicine
  • Amanda Haddock, Dragon Master Foundation

View the video recording

10:00 – 10:30 a.m. Break/Networking
10:30 – 11:45 a.m.

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

  • Mahsa Shabani, Ph.D., Unviersity of Leuven
  • Adam Resnick, Ph.D., Children's Hospital of Philadelphia
  • Bastian Greshake Tzovaras, Ph.D., Open Humans and Center for Research and Interdisciplinarity
  • Dawn Barry, LunaPBC
  • John Wilbanks, Sage Bionetworks

View the video recording

11:45 a.m. – 12:30 p.m.

Panel discussion: Perceptions and realities for individuals to share their genomic data

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12:30 – 2:00 p.m. Lunch, concurrent poster viewing and networking
2:00 – 3:00 p.m.

Keynote Speakers:

  • Deven McGraw, JD, M.P.H., Ciitizen
  • Karl Surkan, Ph.D., Massachusetts Institute of Technology

View the video recording

3:00 – 3:30 p.m.

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, J.D., National Cancer Institute

  • Greg Hampikian, Ph.D., Boise State University, Idaho Innocence Project
  • Christi Guerrini, J.D., M.P.H., Baylor COllege of Medicine

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3:30 – 3:45 p.m. Break
3:45 – 4:30 p.m.
  • Richard Milne, Ph.D., Wellcome Genome Campus
  • Michelle McGowan, Ph.D., Cincinatti Children's Hospital Medical Center
  • Robert Cook-Deegan, M.D., Arizona State University

View the video recording

4:30 – 5:30 p.m.

Panel discussion: Risks and benefits to individuals and communities

View the video recording

Day 2

9:00 – 9:30 a.m.

Keynote Speaker: Janet Freeman-Daily, M.S., Eng, Lung cancer patient/activist and the ROS1ders

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9:30 – 10:45 a.m.

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, M.D., Ph.D., National Cancer Institute

  • Jayce Ward
  • Andy Faucett, MS, Geisinger, Genomic Medicine Institute
  • Casey Greene, Ph.D., University of Pennsylvania
  • Carly Strasser, Ph.D., Fred Hutchinson Cancer Research Center
  • Stacy W. Gray, M.D., A.M., City of Hope

View the video recording

10:45 – 11:00 a.m. Short break
11:00 – 11:30 a.m.

Panel discussion: Future challenges and opportunities for research and health

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11:30 a.m. – 12:00 p.m.

Closing remarks

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