societal aspects of big data
DESCRIPTION
Panel presentation at the Big Data in Biomedicine closed session held in Barcelona on November 11, 2014.TRANSCRIPT
Societal Aspects of Big DataSome General Statements
Philip E. Bourne, NIH
Ethical Issues
We are guided by, Article 27 of the 1948 Universal Declaration of Human Rights.
Article 27 guarantees the rights of every individual in the world
“to share in scientific advancement and its benefits” (including to freely engage in responsible scientific inquiry), and at the same time “to the protection of the moral and material interests resulting from any scientific…production of which [a person] is the author.”
Ethical Issues
The global alliance for genomic health has established a valuable framework for addressing the issue on a global scale
Balance the rights of the patient through informed consent and appropriate protections versus the ease of access to patient data for broad research purposes
http://genomicsandhealth.org/
Citizen’s Participation Is Not New
Citizen’s Participation
It can really work
Quality is always a consideration
Educational Aspects
McKinsey predicts a shortage of 140,000 to 190,000 people with deep analytical skills
Business Opportunities
Source Michael Bell http://homepages.cs.ncl.ac.uk/m.j.bell1/blog/?p=830
• Sustainability demands we look for PPPs
• There are cultural barriers to be overcome
• We have much to learn from each other
Public Policies
Can be top down or bottom up depending on the stakeholders responsible for the policy
Both are important
Examples:– Bottom up – Community decision to insist that publishers not
publish papers unless the primary data are publically available
– Top down – Publisher eg PLOS decides same
– Top down – US Holdren memo on data sharing
Societal Aspects of Big DataSome Personal Statements
Philip E. Bourne, NIH
Ethical Issues
For the first time in history health care is becoming patient centric – the patient must decide how and what to share – not the care giver, not the institution, not the insurance company
There needs to be trusted researcher access; violation of that trust should be punished
Large cohorts will emerge and contribute increasingly to patient centered outcomes
Citizen’s Participation
Funders have a responsibility to support citizen science as well as those from distant fields
Gamers workshop December 2014
Educational Aspects
Training initiatives can be international – metadata to support course descriptions would be a great start
Graduate students are the glue
Excellent opportunity to support minorities
Business OpportunitiesThe Commons
The CommonsConceptual Framework
Public CloudPlatforms
Super Computing (HPC) Platforms
Other Platforms ?
Google, AWS (Amazon)
Microsoft (Azure), IBM,
other?
Most easily accessed by
NIH PIs
In house compute
solutions
Private clouds, HPC
– Pharma
– The Broad
– Bionimbus
Low access by NIH PIs
Super Computing 2014
ADDS coordinating
meeting with SC centers
NERSC “Commons Pilot”
Public Policies
NIH Support for data citation
NIH data sharing plans on all grants
NIH machine readable data sharing plans for authentication purposes
