Who Owns the Data? Philip E. Bourne University of California San Diego Image from:

I am Here to Have a Dialogue NOT Give a Monologue

To Get the Dialogue Going Here are a Few Conversation Cards Based on a Possible Real Life Scenario

You have a friend or loved one who was diagnosed with a solid tumor which has not been amenable to treatment by conventional chemotherapy, radiotherapy of drug treatment – a new antibody xx is suggested

What is an Antibody? We are a generation with the world’s knowledge at our fingertips Who owns these data? How authoritative is this information? – Who added it? – Where are they from? – Was it peer reviewed? – Is crowd sourcing enough?

Who Owns the Data?

Lets Take the Next Obvious Step

Number of released entries Year: Science is Awash in Data A life’s work Weeks work

Science is Awash in Data - Implications Less perceived value than years ago More is digital – so called eScience Incentives to share greater

Scientists are Changing Too My generation was seen but not heard – now scientists are heard but not seen and in some cases seen as well Generation with the world’s knowledge at their fingertips Generation that communicates broadly

Scientists are Changing Too - Implications More openness and sharing of data but… DisseminationReward

Would you Trust Your Friends Life to a Google Page Ranking? Authenticity and Quality Are Paramount Peer review helps here.. However… System under pressure due to volume

The World’s Scientific Literature is Not Open Your tax $$’s pay for the research – should you be able to study the outcome?

Is Access Necessarily a Good Thing? Science is a process To effectively make use of data at any step of the process requires that the process be understood – Negative data are part of the scientific process – Advances often come from not proving something but disproving something else

Is Access Necessarily a Good Thing? We can find a lot about our financial health and make decisions concerning it on- line Only a small percentage of people can do that with their health record This is changing HIPAA provides safeguards PatientsLikeMe has the patient in control Possibility of misuse

Okay Bourne so Answer the Question: Who Does Owns the Data In most cases the institution and the rules for each of different: – Industry – preserve trade secrets – National labs – preserve national security – Private university – Public university – Academic medical center The granting agency The individual

Key Points Quantity Quality Scientist’s attitude Accessibility Security / Misuse