big data, big headaches: data privacy in the genomic era

Amye Kenall Development Manager, Open Data

BioMed Central

Big Data, Big Headaches Data Privacy in the Genomic Era

SpotOn London November 14, 2014

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

©Mike Schatz

Solving Cancer (the Haussler slide)

As data generation grows, concerns for privacy grow

Technology can’t protect our identities

Where we are now?

Personal Genome Project

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

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

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?

@AmyeKenall Amye.kenall@biomedcentral.com CC-BY 4.0: Feel free to share, copy, adapt, reuse.

Thank you!