societal aspects of big data

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

michelle.dunn@nih.gov

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

NIHNIH……Turning Discovery Into HealthTurning Discovery Into Health

philip.bourne@nih.gov