Closing the ethics gap in research PPPs: a role for translational science and proximal ethicality

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Closing the ethics gap in research PPPsa role
for translational science and proximal
ethicality?
Janet Atkinson-Grosjean, PhD Senior Research
Associate W. Maurice Young Centre for Applied
EthicsUniversity of British Columbia
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Overview

• The new research order
• An ethics gap opens
• Proximal ethicality as a bridge?
• The translational genomics study
• Checklists and recommendations

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1. The new research order
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Linear model of research(the golden age)
Public
Basic Research
Applied RD
Production
State
Academy

Market
Industry
PUBLIC
PRIVATE
Growth
Taxes
Public/Private Divide
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The new nonlinear research order (the messy
reality)
Public-private divide is open and permeable
Research Councils
Big Pharma
Academy

Industry CanadaHealth Canadaetc
Hybrid or boundary organizations
Biotech
The Public Interest
Source JAG 2006
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Formal and informal boundary hybrids
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Hybrid organizations and translational science
Hybrid Organizations
Academy
Industry
PureBasic
TranslationalScience
PureApplied
Edison
Bohr
Pasteur
Translational science is use-inspired1Translati
on-to-profit (commercial)Translation-to-practice
(clinical/practical)Public-interest-translation
(civic/social)
1. Stokes (1997)
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2. An ethics gap opens
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An Ethics Gap
PublicOrganizations
Private Organizations
Hybrid Organizations
Public sector ethicsDemocratic values
The Ethics Gap
Business ethicsCommercial values
Largely due to their novelty, an ethics gap opens
up in hybrid organizations and translational
science
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Comparing value domains
Sources Denhardt 2003, Gawthrop 1984
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Where do hybrids fit?
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3. Proximal ethicality as a bridge?
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How we learn proximal development

• Lev Vygotsky childhood development
• Basic concept applied more broadly
• we learn best when taught by more experienced
  others within our communities of practice
• An apprenticeship model sitting by Nelly
• Novices learn from Masters

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Communities of practice
Source Hakkarainen 2004
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Proximal ethicality

• Working definition
• The co-production of ethical understanding in new
  public-private communities of practice where each
  is a novice in the ethical domain of the other
  and all are engaged in translational science

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4. The Translational Genomics Study
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Three domains of translational science

• Our typology
• Translation to practice
• Functional domain
• Clinical science
• Translation to profit
• Commercial domain
• Merchant science
• Translation in the public interest
• Societal domain
• Civic science

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Translational genomics

• Working definition
• Any activity that tends to move genomics out of
  the laboratory, and into the market, the clinic,
  or society at large

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Rationale for the study

• Little research available on translational
  science and scientists who translate
• Translational requirements are pervasive in
  funding agreements but results often fall short
  of expectations
• Translational science often conducted under
  hybrid arrangements that lack clear ethical
  guidelines
• Goal 1 fill the conceptual and empirical gaps in
  our understanding of translational science
• Goal 2 bridge the ethics gap by developing
  understanding of how public and private cultures
  come together in translational science
• Goal 3 construct policy-relevant ethical
  guidelines for scientists and funders engaged in
  translational science through hybrid
  organizations

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Research methods

• Comparative case studies of nodes in Genome
  Canadas Pathogenomics of Innate Immunity network
• mixed methods of data collection (ie both
  qualitative and quantitative)
• nested levels of analysis.
• Individual scientists (120-150)
• Laboratories (15-20)
• Funding/ governance organizations (7-10)
• Policy instruments and institutions (Canada, UK,
  Singapore, Ireland)
• National and global political economic contexts

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Factors to be examined
Fieldwork surveyssite visitsinterviews

• 1. Individual preferences
• 2. Community values
• 3. Generational effects
• 4. Organizational structures
• 5. Policy institutions
• 6. Political-economic contexts
• 7. Others that arise

Conceptual studies and Literature reviews
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5. Checklists and recommendations
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PPPs and hybrid agencies an ethics checklist

• What degree of political scrutiny and disclosure?
• direct ministerial responsibility to Parliament?
• What degree of financial scrutiny and disclosure?
• subject to normal mechanisms of public-service
  oversight?
• What degree of public scrutiny and disclosure?
• obligation to report performance to the general
  public?
• transparent mechanisms for external complaints
  and redress?
• What degree of compliance with institutional
  checks and balances?
• subject to Freedom of Information Act?
• subject to scrutiny by Auditor General?

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Questions for further discussion

• What is the problem that PPPs and other hybrid
  agencies were established to address?
• In what ways do PPPs and other hybrid agencies
  add value to the research enterprise?
• Are PPPs a novel and productive convergence of
  public and private interests? Or, are they an
  ideologically driven policy reform? Are the two
  mutually exclusive?

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Ethical questions, continued

• What are the broader implications of delegating
  implementation, governance, and funding of
  national research efforts to privatized
  research partnerships?
• Given the sums and interests involved, do PPPs
  provide adequate governance accountability?
• What incentive is there for private partners to
  accept public-sector governance accountability
  structures?

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Thanks to my colleagues and sponsors at W.
Maurice Young Centre for Applied Ethics
(UBC)Pathogenomics of Innate Immunity Network
Genome British ColumbiaGenome Canada