Who Owns the Data?
Philip E. Bourne
University of California San Diego
pbourne@ucsd.edu
www.sdsc.edu/pb
Image from: http://timoelliott.com/blog/2007/09/fixing_the_bi_tragedy_of_the_c.html
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?
–
–
–
–
http://en.wikipedia.org
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
Weeks work
Science is Awash in
Data
A life’s work
Year:
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…
Dissemination
Reward
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 online
• 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