Symposium: Participants Share Data 2019
We convened a symposium on September 26-27, 2019.
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 hosted 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
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For questions regarding this symposium, email NCIParticipantShareData@mail.nih.gov.