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Biobanks as Knowledge Institutions
Professor Michael J Madison
University of Pittsburgh School of Law
Pittsburgh Pennsylvania USA
madison@pitt.edu
Global Genes – Local Concerns Seminar
University of Copenhagen
3 November 2017
1. Knowledge Institutions: Producing, pooling, preserving, and
distributing data, information, and other knowledge resources.
2. Social dilemmas: Privacy, ethics, IP, scientific norms, the roles of
the state, global and local conditions … and more.
3. Governance: Rather than law and regulation. De-emphasizing
the role of the state in solving social dilemmas; de-emphasizing
distinctions between public/private; highlighting the potential for
effective collective action.
4. Commons: Institutionalized sharing of resources among
members of some group or community, solving some social
dilemma. Not a place. Not a thing. Not “the commons.”
5. Systematizing Research: Comparative Institutional Analysis
6. The Knowledge Commons Research Framework
7. Elements: Dilemmas – Goals – Resources – Actors – Rules in
Use – Action Arenas – Assessment
1. Knowledge Institutions: Producing, pooling, preserving, and
distributing data, information, and other knowledge resources.
2. Social Dilemmas: Privacy, ethics, IP, scientific norms, the roles of
the state, global and local conditions … and more.
3. Governance: Rather than law and regulation. De-emphasizing
the role of the state in solving social dilemmas; de-emphasizing
distinctions between public/private; highlighting the potential
for effective collective action.
4. Commons: Institutionalized sharing of resources among
members of some group or community, solving some social
dilemma. Not a place. Not a thing. Not “the commons.”
5. Systematizing Research: Comparative Institutional Analysis
6. The Knowledge Commons Research Framework
7. Elements: Dilemmas – Goals – Resources – Actors – Rules in
Use – Action Arenas – Assessment
1. Knowledge Institutions: Producing, pooling, preserving, and
distributing data, information, and other knowledge resources.
2. Social Dilemmas: Privacy, ethics, IP, scientific norms, the roles of
the state, global and local conditions … and more.
3. Governance: Rather than law and regulation. De-emphasizing
the role of the state in solving social dilemmas; de-emphasizing
distinctions between public/private; highlighting the potential
for effective collective action.
4. Commons: Institutionalized sharing of resources among
members of some group or community, solving some social
dilemma. Not a place. Not a thing. Not “the commons.”
5. Systematizing Research: Comparative Institutional Analysis
6. The Knowledge Commons Research Framework
7. Elements: Dilemmas – Goals – Resources – Actors – Rules in
Use – Action Arenas – Assessment
1. Knowledge Institutions: Producing, pooling, preserving, and
distributing data, information, and other knowledge resources.
2. Social Dilemmas: Privacy, ethics, IP, scientific norms, the roles of
the state, global and local conditions … and more.
3. Governance: Rather than law and regulation. De-emphasizing
the role of the state in solving social dilemmas; de-emphasizing
distinctions between public/private; highlighting the potential
for effective collective action.
4. Commons: Institutionalized sharing of resources among
members of some group or community, solving social
dilemmas. Not a place. Not a thing. Not “the commons.”
5. Systematizing Research: Comparative Institutional Analysis
6. The Knowledge Commons Research Framework
7. Elements: Dilemmas – Goals – Resources – Actors – Rules in
Use – Action Arenas – Assessment
1. Knowledge Institutions: Producing, pooling, preserving, and
distributing data, information, and other knowledge resources.
2. Social Dilemmas: Privacy, ethics, IP, scientific norms, the roles of
the state, global and local conditions … and more.
3. Governance: Rather than law and regulation. De-emphasizing
the role of the state in solving social dilemmas; de-emphasizing
distinctions between public/private; highlighting the potential
for effective collective action.
4. Commons: Institutionalized sharing of resources among
members of some group or community, solving social
dilemmas. Not a place. Not a thing. Not “the commons.”
5. Systematizing Research: Comparative Institutional Analysis.
6. The Knowledge Commons Research Framework
7. Elements: Dilemmas – Goals – Resources – Actors – Rules in
Use – Action Arenas – Assessment
1. Knowledge Institutions: Producing, pooling, preserving, and
distributing data, information, and other knowledge resources.
2. Social Dilemmas: Privacy, ethics, IP, scientific norms, the roles of
the state, global and local conditions … and more.
3. Governance: Rather than law and regulation. De-emphasizing
the role of the state in solving social dilemmas; de-emphasizing
distinctions between public/private; highlighting the potential
for effective collective action.
4. Commons: Institutionalized sharing of resources among
members of some group or community, solving social
dilemmas. Not a place. Not a thing. Not “the commons.”
5. Systematizing Research: Comparative Institutional Analysis.
6. The Knowledge Commons Research Framework (motivated by
Ostrom).
7. Elements: Dilemmas – Goals – Resources – Actors – Rules in
Use – Action Arenas – Assessment
1. Knowledge Institutions: Producing, pooling, preserving, and
distributing data, information, and other knowledge resources.
2. Social Dilemmas: Privacy, ethics, IP, scientific norms, the roles of
the state, global and local conditions … and more.
3. Governance: Rather than law and regulation. De-emphasizing
the role of the state in solving social dilemmas; de-emphasizing
distinctions between public/private; highlighting the potential
for effective collective action.
4. Commons: Institutionalized sharing of resources among
members of some group or community, solving social
dilemmas. Not a place. Not a thing. Not “the commons.”
5. Systematizing Research: Comparative Institutional Analysis.
6. The Knowledge Commons Research Framework (motivated by
Ostrom).
7. Elements: Dilemmas – Goals – Resources – Actors – Rules in
Use – Action Arenas – Assessment.
8. Results: Case studies and preliminary findings (with Strandburg
and Frischmann and many case study investigators).
Significance of sharing resource(s) rather than defining/enforcing exclusivity, in
cases across:
• Contemporary practice
• Historical practice
• Scientific practice
• Cultural practice
Utility of commons governance in multiple settings:
• “Open” membership commons
• “Centrally managed” membership commons
• Coordination across practice communities
Diversity of resources managed as commons, and diversity of purposes:
• Creating infrastructural resources
• Relying on infrastructural resources
• Coordinating governance of material and immaterial
resources
• Producing cumulative or collective creativity and
innovation
• Producing governance as a commons resource
8. Results: Case studies and preliminary findings (with Strandburg
and Frischmann and many case study investigators).
Significance of sharing resource(s) rather than defining/enforcing exclusivity, in
cases across:
• Contemporary practice
• Historical practice
• Scientific practice
• Cultural practice
Utility of commons governance in multiple settings:
• “Open” membership commons
• “Centrally managed” membership commons
• Coordination across practice communities
Diversity of resources managed as commons, and diversity of purposes:
• Creating infrastructural resources
• Relying on infrastructural resources
• Coordinating governance of material and immaterial
resources
• Producing cumulative or collective creativity and
innovation
• Producing governance as a commons resource
8. Results: Case studies and preliminary findings (with Strandburg
and Frischmann and many case study investigators).
Significance of sharing resource(s) rather than defining/enforcing exclusivity, in
cases across:
• Contemporary practice
• Historical practice
• Scientific practice
• Cultural practice
Utility of commons governance in multiple settings:
• “Open” membership commons
• “Centrally managed” membership commons
• Coordination across practice communities
Diversity of resources managed as commons, and diversity of purposes:
• Creating infrastructural resources
• Relying on infrastructural resources
• Coordinating governance of material and immaterial
resources
• Producing cumulative or collective creativity and
innovation
• Producing governance as a commons resource
9. Biobanks: The KC framework is useful to investigate forms of
diversity among biobanks as knowledge sharing institutions and
derive lessons from comparative analysis.
9. Diversity exists in biobanking with respect to historical and
contemporary:
 Scientific/technical domains (biomedical, agricultural)
 Forms of data, information, knowledge (intersections of
materiality and immateriality; semantic layers)
 Formal institutional modes and scales (genetic information,
exemplar/cultivar, population-based, etc.)
 Forms of technical and governance infrastructure
 Social dilemmas and goals (privacy and confidentiality,
information security, IP, public health, clinical use,
competition law/antitrust, researcher motivations)
10. Governance as contextual: No universal or one-size-fits-all
policy prescriptions are anticipated.
9. Biobanks: The KC framework is useful to investigate forms of
diversity among biobanks as knowledge sharing institutions and
derive lessons from comparative analysis.
10. Diversity exists in biobanking with respect to historical and
contemporary …
 Scientific/technical domains (biomedical, agricultural)
 Forms of data, information, knowledge (intersections of
materiality and immateriality; semantic layers)
 Formal institutional modes and scales (genetic information,
exemplar/cultivar, population-based, disease-based, etc.)
 Forms of technical and governance infrastructure
 Social dilemmas and goals (privacy and confidentiality,
information security, IP, public health, industrial interests,
clinical use, competition law/antitrust, researcher
motivations)
10. Governance as contextual: No universal or one-size-fits-all
policy prescriptions are anticipated.
9. Biobanks: The KC framework is useful to investigate forms of
diversity among biobanks as knowledge sharing institutions and
derive lessons from comparative analysis.
10. Diversity exists in biobanking with respect to historical and
contemporary …
 Scientific/technical domains (biomedical, agricultural)
 Forms of data, information, knowledge (intersections of
materiality and immateriality; semantic layers)
 Formal institutional modes and scales (genetic information,
exemplar/cultivar, population-based, disease-based, etc.)
 Forms of technical and governance infrastructure
 Social dilemmas and goals (privacy and confidentiality,
information security, IP, public health, industrial interests,
clinical use, competition law/antitrust, researcher
motivations)
11. Governance as contextual: No universal or one-size-fits-all
policy prescriptions are anticipated.
Questions, discussion, and thanks.
Michael Madison
University of Pittsburgh School of Law
madison@pitt.edu
Knowledge commons colleagues:
Brett Frischmann, Villanova University School of Law
Katherine Strandburg, New York University School of Law

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Biobanks as Knowledge Institutions

  • 1. Biobanks as Knowledge Institutions Professor Michael J Madison University of Pittsburgh School of Law Pittsburgh Pennsylvania USA madison@pitt.edu Global Genes – Local Concerns Seminar University of Copenhagen 3 November 2017
  • 2. 1. Knowledge Institutions: Producing, pooling, preserving, and distributing data, information, and other knowledge resources. 2. Social dilemmas: Privacy, ethics, IP, scientific norms, the roles of the state, global and local conditions … and more. 3. Governance: Rather than law and regulation. De-emphasizing the role of the state in solving social dilemmas; de-emphasizing distinctions between public/private; highlighting the potential for effective collective action. 4. Commons: Institutionalized sharing of resources among members of some group or community, solving some social dilemma. Not a place. Not a thing. Not “the commons.” 5. Systematizing Research: Comparative Institutional Analysis 6. The Knowledge Commons Research Framework 7. Elements: Dilemmas – Goals – Resources – Actors – Rules in Use – Action Arenas – Assessment
  • 3. 1. Knowledge Institutions: Producing, pooling, preserving, and distributing data, information, and other knowledge resources. 2. Social Dilemmas: Privacy, ethics, IP, scientific norms, the roles of the state, global and local conditions … and more. 3. Governance: Rather than law and regulation. De-emphasizing the role of the state in solving social dilemmas; de-emphasizing distinctions between public/private; highlighting the potential for effective collective action. 4. Commons: Institutionalized sharing of resources among members of some group or community, solving some social dilemma. Not a place. Not a thing. Not “the commons.” 5. Systematizing Research: Comparative Institutional Analysis 6. The Knowledge Commons Research Framework 7. Elements: Dilemmas – Goals – Resources – Actors – Rules in Use – Action Arenas – Assessment
  • 4. 1. Knowledge Institutions: Producing, pooling, preserving, and distributing data, information, and other knowledge resources. 2. Social Dilemmas: Privacy, ethics, IP, scientific norms, the roles of the state, global and local conditions … and more. 3. Governance: Rather than law and regulation. De-emphasizing the role of the state in solving social dilemmas; de-emphasizing distinctions between public/private; highlighting the potential for effective collective action. 4. Commons: Institutionalized sharing of resources among members of some group or community, solving some social dilemma. Not a place. Not a thing. Not “the commons.” 5. Systematizing Research: Comparative Institutional Analysis 6. The Knowledge Commons Research Framework 7. Elements: Dilemmas – Goals – Resources – Actors – Rules in Use – Action Arenas – Assessment
  • 5. 1. Knowledge Institutions: Producing, pooling, preserving, and distributing data, information, and other knowledge resources. 2. Social Dilemmas: Privacy, ethics, IP, scientific norms, the roles of the state, global and local conditions … and more. 3. Governance: Rather than law and regulation. De-emphasizing the role of the state in solving social dilemmas; de-emphasizing distinctions between public/private; highlighting the potential for effective collective action. 4. Commons: Institutionalized sharing of resources among members of some group or community, solving social dilemmas. Not a place. Not a thing. Not “the commons.” 5. Systematizing Research: Comparative Institutional Analysis 6. The Knowledge Commons Research Framework 7. Elements: Dilemmas – Goals – Resources – Actors – Rules in Use – Action Arenas – Assessment
  • 6. 1. Knowledge Institutions: Producing, pooling, preserving, and distributing data, information, and other knowledge resources. 2. Social Dilemmas: Privacy, ethics, IP, scientific norms, the roles of the state, global and local conditions … and more. 3. Governance: Rather than law and regulation. De-emphasizing the role of the state in solving social dilemmas; de-emphasizing distinctions between public/private; highlighting the potential for effective collective action. 4. Commons: Institutionalized sharing of resources among members of some group or community, solving social dilemmas. Not a place. Not a thing. Not “the commons.” 5. Systematizing Research: Comparative Institutional Analysis. 6. The Knowledge Commons Research Framework 7. Elements: Dilemmas – Goals – Resources – Actors – Rules in Use – Action Arenas – Assessment
  • 7. 1. Knowledge Institutions: Producing, pooling, preserving, and distributing data, information, and other knowledge resources. 2. Social Dilemmas: Privacy, ethics, IP, scientific norms, the roles of the state, global and local conditions … and more. 3. Governance: Rather than law and regulation. De-emphasizing the role of the state in solving social dilemmas; de-emphasizing distinctions between public/private; highlighting the potential for effective collective action. 4. Commons: Institutionalized sharing of resources among members of some group or community, solving social dilemmas. Not a place. Not a thing. Not “the commons.” 5. Systematizing Research: Comparative Institutional Analysis. 6. The Knowledge Commons Research Framework (motivated by Ostrom). 7. Elements: Dilemmas – Goals – Resources – Actors – Rules in Use – Action Arenas – Assessment
  • 8. 1. Knowledge Institutions: Producing, pooling, preserving, and distributing data, information, and other knowledge resources. 2. Social Dilemmas: Privacy, ethics, IP, scientific norms, the roles of the state, global and local conditions … and more. 3. Governance: Rather than law and regulation. De-emphasizing the role of the state in solving social dilemmas; de-emphasizing distinctions between public/private; highlighting the potential for effective collective action. 4. Commons: Institutionalized sharing of resources among members of some group or community, solving social dilemmas. Not a place. Not a thing. Not “the commons.” 5. Systematizing Research: Comparative Institutional Analysis. 6. The Knowledge Commons Research Framework (motivated by Ostrom). 7. Elements: Dilemmas – Goals – Resources – Actors – Rules in Use – Action Arenas – Assessment.
  • 9. 8. Results: Case studies and preliminary findings (with Strandburg and Frischmann and many case study investigators). Significance of sharing resource(s) rather than defining/enforcing exclusivity, in cases across: • Contemporary practice • Historical practice • Scientific practice • Cultural practice Utility of commons governance in multiple settings: • “Open” membership commons • “Centrally managed” membership commons • Coordination across practice communities Diversity of resources managed as commons, and diversity of purposes: • Creating infrastructural resources • Relying on infrastructural resources • Coordinating governance of material and immaterial resources • Producing cumulative or collective creativity and innovation • Producing governance as a commons resource
  • 10. 8. Results: Case studies and preliminary findings (with Strandburg and Frischmann and many case study investigators). Significance of sharing resource(s) rather than defining/enforcing exclusivity, in cases across: • Contemporary practice • Historical practice • Scientific practice • Cultural practice Utility of commons governance in multiple settings: • “Open” membership commons • “Centrally managed” membership commons • Coordination across practice communities Diversity of resources managed as commons, and diversity of purposes: • Creating infrastructural resources • Relying on infrastructural resources • Coordinating governance of material and immaterial resources • Producing cumulative or collective creativity and innovation • Producing governance as a commons resource
  • 11. 8. Results: Case studies and preliminary findings (with Strandburg and Frischmann and many case study investigators). Significance of sharing resource(s) rather than defining/enforcing exclusivity, in cases across: • Contemporary practice • Historical practice • Scientific practice • Cultural practice Utility of commons governance in multiple settings: • “Open” membership commons • “Centrally managed” membership commons • Coordination across practice communities Diversity of resources managed as commons, and diversity of purposes: • Creating infrastructural resources • Relying on infrastructural resources • Coordinating governance of material and immaterial resources • Producing cumulative or collective creativity and innovation • Producing governance as a commons resource
  • 12. 9. Biobanks: The KC framework is useful to investigate forms of diversity among biobanks as knowledge sharing institutions and derive lessons from comparative analysis. 9. Diversity exists in biobanking with respect to historical and contemporary:  Scientific/technical domains (biomedical, agricultural)  Forms of data, information, knowledge (intersections of materiality and immateriality; semantic layers)  Formal institutional modes and scales (genetic information, exemplar/cultivar, population-based, etc.)  Forms of technical and governance infrastructure  Social dilemmas and goals (privacy and confidentiality, information security, IP, public health, clinical use, competition law/antitrust, researcher motivations) 10. Governance as contextual: No universal or one-size-fits-all policy prescriptions are anticipated.
  • 13. 9. Biobanks: The KC framework is useful to investigate forms of diversity among biobanks as knowledge sharing institutions and derive lessons from comparative analysis. 10. Diversity exists in biobanking with respect to historical and contemporary …  Scientific/technical domains (biomedical, agricultural)  Forms of data, information, knowledge (intersections of materiality and immateriality; semantic layers)  Formal institutional modes and scales (genetic information, exemplar/cultivar, population-based, disease-based, etc.)  Forms of technical and governance infrastructure  Social dilemmas and goals (privacy and confidentiality, information security, IP, public health, industrial interests, clinical use, competition law/antitrust, researcher motivations) 10. Governance as contextual: No universal or one-size-fits-all policy prescriptions are anticipated.
  • 14. 9. Biobanks: The KC framework is useful to investigate forms of diversity among biobanks as knowledge sharing institutions and derive lessons from comparative analysis. 10. Diversity exists in biobanking with respect to historical and contemporary …  Scientific/technical domains (biomedical, agricultural)  Forms of data, information, knowledge (intersections of materiality and immateriality; semantic layers)  Formal institutional modes and scales (genetic information, exemplar/cultivar, population-based, disease-based, etc.)  Forms of technical and governance infrastructure  Social dilemmas and goals (privacy and confidentiality, information security, IP, public health, industrial interests, clinical use, competition law/antitrust, researcher motivations) 11. Governance as contextual: No universal or one-size-fits-all policy prescriptions are anticipated.
  • 15. Questions, discussion, and thanks. Michael Madison University of Pittsburgh School of Law madison@pitt.edu Knowledge commons colleagues: Brett Frischmann, Villanova University School of Law Katherine Strandburg, New York University School of Law