Symposium on Personal Control of Genomic Data for Research
September 26-27, 2019, Masur Auditorium, National Institutes of Health
|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.||
|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.||
|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.||
|3:30 - 3:45 p.m.||Short break|
|3:45 - 4:30 p.m.||
|4:30-5:30 p.m.||Panel discussion: risks and benefits to individuals and communities|
|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.||
|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|