The document discusses the history of genomic data sharing and privacy concerns, from the Human Genome Project in 1990 to current issues. It notes increasing data generation has raised privacy concerns as technology cannot fully protect identities. A survey found most felt genomic data sharing benefited research but some found the process more difficult than expected or data quality lower. Unanswered questions remain around when to share results with participants, different privacy needs, authority over data privacy, and how to ease data reuse while preserving privacy.

1. Amye Kenall Development Manager, Open Data
BioMed Central
Big Data, Big Headaches Data Privacy in the Genomic Era
SpotOn London
November 14, 2014

2. 1990
1996
2009
2014
Human Genome Project
Bermuda Principles
Toronto Data Release Workshop
NIH issues Genomic Data Sharing Mandate
2000
2003
Human Genome cannot be patented says Clinton
Human Genome Project Completed

5. ©Mike Schatz

6. Solving Cancer (the Haussler slide)

7. As data generation grows, concerns for privacy grow
Technology can’t protect our identities

9. Where we are now?

10. Personal Genome Project

11. 89% felt it had benefited their research; 55% said application process was more difficult than expected, and 27% said the data quality was lower than expected
Data Sharing and dbGaP: A Survey of Practices and Opinions Among Human Geneticists. D. Kaufman, J. Bollinger, R. Dvoskin, ASHG 2014 Abstract

13. The Global Alliance
The stakes are high, because if we get it right we can create new opportunities to define diagnostic categories, streamline clinical trials, and match patients to therapy. We want to make sure this is done in a global manner, and with the highest standards for ethics and privacy.
Dr Tom Hudson, Chairman of the Executive Committee of the International Cancer Genome Consortium

14. Unanswered Questions
When to feed back to participants?
Different privacy needs
Who holds authority over data privacy?
How will the law protect us from data misuse and discrimination?
Genetic Information Nondiscrimination Act, 2008
Genetic Information not a protected under UK Equality Act, 2010
How can we make data reuse of restricted access data easier for research and preserve privacy?

15. @AmyeKenall
Amye.kenall@biomedcentral.com
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