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Bodies of Data: Public Participation, Governance and the New Bioinformatics

Event date: 
Friday, March 7, 2014 - 09:00 to Saturday, March 8, 2014 - 15:00
Event type: 
Workshop

March 7th-8th, 2014
Arizona State University, Tempe

Location: University Club, 425 East University Dr Tempe, AZ 85281 map

Please see agenda below.

If you are interested in attending, please click here to RSVP.

Abstract

Poster

Recent developments at the intersection of biological, information and communications technologies have opened the way to profound transformations in biomedical research and practice by eliciting and aggregating data from human bodies at scale and scope that were previously unimaginable.  Such bodies of data form a critical infrastructure for developing a more precise and personalized medicine. Building such collections depends upon the consent of individuals to supply information and tissue from their bodies, even as the future uses and meaning of such information is necessarily uncertain.  

These developments have elicited profound questions about—and new experiments in— architectures of governance.  Increased access to these technologies has attracted new actors, engendered new uses, and elicited new modes of participation in research. Examples include disease advocacy driven research, crowd-sourced citizen science, and products like direct-to-consumer genetic testing.  These new entrants bring different imaginations of rights and benefits, challenging traditional approaches to biomedical research and blurring distinctions between consumer, patient and research subject. 

There is a need to rethink established regimes of governance. How will these developments affect the rights, roles and responsibilities of scientists, physicians, regulators, citizens, consumers, research participants, and patients? What opportunities—and obligations—exist for extending public participation in research to include a participatory role in governance? This workshop will examine contexts where existing architectures of ethical governance have been strained and challenged, and where forms of innovation and experimentation have begun to emerge. It will draw together an international group of leaders from the biomedical sciences, engineering, social sciences, humanities, industry and government.


Workshop Agenda

Friday, March 7th

8:30                            
Continental Breakfast

9:00                            
Welcome and Introduction - Ben Hurlbut (ASU)

9:15-10:30                  
Emerging Biomedical Infrastructure
Chair: Krishanu Saha (U of Wisconsin)
·         Noralane Lindor (Mayo)
·         Gabriel Shaibi (ASU)
·         Edward Shortliffe (ASU)
·         Phillip Stafford (ASU)
·         Dean Suhr (MLD Foundation/Genetic Alliance)
·         Lee Seabrooke (Banner MD Anderson)

10:30-10:45                
Coffee Break

10:45-12:30                
Institutional Obligations and Individual Entitlements
Chair: Katherine Hunt (Mayo)
·         Jennifer McCormick (Mayo)
·         Sarah Kalia (Brigham and Women’s Hospital)
·         Jeantin Lunshof (Harvard)
·         Krishanu Saha (U. of Wisconsin)

12:30-1:45                  
Lunch

1:45-3:15                    
Principles in Practice
Chair: Jason Robert (ASU
·         Erik Aarden (Harvard)
·         Jenny Reardon (UC Santa Cruz
·         Patrick Taylor (Boston Children’s)

3:15- 3:30                   
Coffee Break

3:30-5:00                    
Participation, Governance and the Politics of Trust
Chair: Jeff Skopek (Harvard Law School)
·         Benedicte Callan (ASU)
·         Kelly Edwards (U. of Washington)
·         Mariachiara Tallacchini (Universita Cattolica SCof Milan & Joint Research Centre, European Commission)

5:00-5:30                    
Reflections and General Discussion
Sheila Jasanoff (Harvard)

Saturday, March 8th

9:00                            
Continental Breakfast

9:30-10:30                  
Roundtable: Declaring Promise, Designating Priorities and Defining Benefits
Chair: Jason Robert (ASU)
·         Stephanie Buchholtz (TGen)
·         Sarah Kalia
·         Jennifer McCormick (Mayo)
·         Krishanu Saha (U. of Wisconson)
·         Dean Suhr (MLD Foundation/Genetic Alliance)
·         Patrick Taylor (Boston Children’s)

10:30-11:00                
Coffee

11:00-12:30                
Roundtable: Public Interests, Private Values, and Collective Resources
Moderator: Clark Miller
·         Benedicte Callan (ASU)
·         Kelly Edwards (U. of Washington)
·         Ben Hurlbut (ASU)
·         Jeantine Lunschof (Harvard)
·         Jeff Skopek (Harvard)
·         Mariachiara Tallacchini (Universita Cattolica SC of Milan & Joint Research Centre, European Commission) 

12:30-1:30                  
Lunch

1:30-2:45                    
General Discussion
Moderator: Ben Hurlbut (ASU)

2:45-3:00                    
Concluding Remarks
Ben Hurlbut (ASU)

Sponsors

 

Virginia G. Piper Charitable Trust
ASU Center for Policy Informatics
ASU Center for Biology and Society

 

 

 

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