DATA, ETHICS, AND SUCCESS BY DESIGN
THANKS • Greg • Liz • Pam • Policy Geeks
IAF • Non-profit • Charitable purpose is research and education • Global in scope • 60 years experience in information policy
BIG BANG • Acceleration in observation
DEFINING TERMS • Privacy • Autonomy • Data Protection • Full range of fundamental rights
OUR SMART BED • And who has rights to observe
SO WHAT ARE KEYSTONES OF WHAT IS PERMISSIBLE? • Individual health • Research • More dynamic market
OBSERVATIONAL WORLD FEEDS ANALYTICS • Are 1970’s legal concepts the best guidance for 2020?
SEEING VERSUS OBSERVATION • Maybe stone age people had it right
DATA PROTECTION IS ABOUT FAIRNESS • But what is fairness?
ETHICS HAS A PLACE IN INFORMATION POLICY • It is about setting the norms for defining what is right and wrong
FUNDAMENTAL RIGHTS ARE ABOUT HUMAN WELFARE • Acceptable big data is about creating value for people
THE IAF AND BIG DATA • A European Regulator: “I am not sure that big data can ever be legal”
GETTING TO LEGAL AND ETHICAL BIG DATA • Two phase approach • Discovery – heavy data use but not impactful • Application – traditional governance works
DETERMINING PERMISSIBILITY • Legal, Fair and Just • Fair and Just often determines what is legal
KEY CHALLENGES • Scalability • Individual participation
PARTING THOUGHTS • We live in an observational age • Ethics matters • Integrate privacy, data protection and security into holistic information policy • Embrace the coolest job in the organization
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