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 (sm), 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
Milne R (2019). Your DNA, Your Say: Public perceptions of genomic data sharing. Symposium on Personal Control of Genomic Data for Research. Bethesda, Maryland, USA via web, 26th September. Spoken presentation