CIHR Workshop: Ethics Policy on CIHR Partnerships with the For-Profit Private Sector - March 19-20, 2007 - Ottawa

Final Report

Table of Contents


Preamble

The Director of Ethics for CIHR, Burleigh Trevor-Deutsch opened the workshop by stating that partnerships were central to CIHR’s mandate. In the words of CIHR President, Alan Bernstein:

"Key to CIHR's success is an integrative vision that brings together all members of the health research enterprise, including those who fund research, those who carry it out, and those who use its results. Excellence, cooperation and partnerships are the hallmarks that will characterize Canada's achievements in health research….Novel partnerships have been forged between CIHR and its partners and we are reaching out, as never before in Canada, to form international alliances."Footnote 1

A key challenge for CIHR is how best to approach the ethical dimensions to partnerships with the for-profit private sector. This report captures the key ideas that emerged over the course of a 1 ½ day workshop on ethical issues with representatives from CIHR, industry, academia, non-governmental charities/foundations and federal departments, agencies and networks.

The objectives of the workshop were as follows:

  1. Identify and foster discussion of the ethical issues associated with CIHR's partnerships with the for-profit private sector; and
  2. Identify the elements that need to be covered in a CIHR Ethics Policy on partnerships with the for-profit private sector. This policy could be a stand-alone document or incorporated into a section of a broader CIHR policy.

Ethics is about values and principles. CIHR's partnerships to date have underscored the reality that there are significant differences in culture between CIHR and the for-profit private sector. In the context of this workshop on partnerships, discussions focused on values and principles that come into play when a funder like CIHR intersects with the for-profit private sector for mutual benefit. Each party may have different objectives and expected outcomes, and interests may coincide and diverge in different areas. The workshop was an opportunity for individuals to come together, share ideas and engage in constructive dialogue to produce an outcome that will benefit everyone.

In this report, attribution of views to individuals is restricted to those of the guest speakers as these views relate to their presentations and to their response to subsequent questions. Comments expressed in breakout groups, in questionnaires and in general discussion are reported here without attribution.

Ethical Considerations, Pitfalls and Opportunities of CIHR Partnerships with the Private Sector

Introduction (Burleigh Trevor-Deutsch, Director, CIHR Ethics Office)

Burleigh Trevor-Deutsch welcomed participants. In his remarks, he acknowledged that CIHR and its for-profit private sector partners function within different cultures and can bring differing objectives to the partnering relationship. Burleigh noted that both perspectives are valid in their own right but they don't necessarily coincide. These differences, and sometimes stereotypes, need to be identified and respected at all stages of partnership discussions in order to work in a collaborative manner.

Presentations

Workshop discussions had the benefit of being informed by presentations given by a number of distinguished guests. What follows is a summary of some of the key ideas from these presentations, which provided an intellectual framework for the workshop discussions.

The following individuals performed the dual role of speaker and workshop participant. Complete copies of the presentations offered by each of these individuals can be downloaded from CIHR's website.

Doug Davidge, A/Director, Advertising Coordination & Partnerships Directorate, Public Works Governments Services Canada

Best Practice Model and Tools

Discussion

Diane Finegood, Scientific Director, CIHR Institute Of Nutrition, Metabolism And Diabetes, Simon Fraser University

Case Study

Discussion

David Castle, Canada Research Chair in Science and Society; and CIHR Standing Committee on Ethics member

Dualities of Interest

Discussion

Jean Marion, Director, Scientific Affairs, Canada's Research-based Pharmaceutical Companies (Rx&D); and CIHR Institute of Circulatory and Respiratory Health Advisory Board member

Private Sector Reality: Rx&D Perspective

Discussion

David Brener, Director, Research Translation Unit, CIHR

CIHR Commercialization Strategy

Discussion

Janet Atkinson-Grosjean, Senior Research Associate; Leader, Translational Genomics GE3LS Project; The W. Maurice Young Centre for Applied Ethics, University of British Columbia

Public-Private Partnerships and Hybrid Organizations

Discussion

Workshop Discussions

Developing an Ethics Policy on Partnerships with the For-Profit Private Sector

Following the plenary presentations and discussions with speakers, participants were divided into four working groups and were asked to answer the following questions:

The working groups were organized into multisectoral groups with representatives from individuals internal to CIHR as well as external stakeholders. What follows is their collective response to the questions above.

What are the potential situations in which ethical issues arise for CIHR related to partnerships with the private sector?

What might be some of the elements of an ethics policy?

A recommendation was made to build on tools already developed by other organizations. PWGSC's High Stakes Partnering Assessment Tool was seen as particularly valuable and informed many of the discussions within the working groups.

Is it desirable and achievable to have a single policy on ethics for private sector partnerships?

How might a new ethics policy for partnerships with the private sector impact the way that CIHR currently approaches partnerships with the private sector? How can the policy serve to enhance partnership opportunities?

What will make the policy meaningful and effective?

Participant Questionnaire: End Of Day 1

After listening to presentations, dialoguing with speakers and engaging in small group discussions, participants ended the first day by filling out a short, one page survey. Participants were asked to respond to three open-ended questions: (1) identify the most important ethical issues associated with CIHR's partnerships with the for-profit private sector, (2) identify the elements that need to be covered in a CIHR ethics policy on partnerships with the for-profit private sector, and (3) other issues relevant to participants. The responses to the survey were presented to the group the next morning in order of frequency of mention.

Most Important Ethical Issues

Elements of a Policy on the Ethics of Partnerships

Some participants at the workshop found it difficult to distinguish between the development of an ethical partnership policy and the development of a policy on the ethics of partnership. There was general agreement that this workshop should focus on an ethics policy as a component of a broader partnership policy. The long term goal of CIHR is to ensure that ethical principles are embedded in the partnership policy and in how individuals think and behave.

The following elements of an ethics policy were identified in participant questionnaires, and discussed in plenary.

Where Do We Go From Here?

The Ethics Office within CIHR has taken the lead on building an ethics policy on partnerships with the for-profit private sector. The discussion and feedback provided through the workshop has provided a welcome starting point for this undertaking. In moving forward, the following steps were put forward for consideration by the Ethics Office in continuing the work of building the policy:

Internal Discussions: The topic of partnerships is one that involves many other individuals and groups within CIHR. The feedback from the workshop has provided a great deal of input which will be synthesized and shared with a recently established internal CIHR Partnerships Working Group, which has representatives from both the central level and the Institutes. The broader partnerships policy is currently under review and the Ethics Office will feed the intelligence gathered through this dialogue into the review process.

External Consultations: Additional input from the for-profit private sector is needed. The consultation process needs to ensure that the focus is not solely on the pharmaceutical industry. Each industry within the private sector has its own experiences with partnerships. Feedback from a variety of perspectives should be sought to ensure the policy is comprehensive and unbiased toward a specific industry or type of company.

Standing Committee on Ethics: CIHR's Standing Committee on Ethics is mandated to provide high level advice on ethics and this body will be engaged to assist in the development of the Ethics Policy for partnerships with the for-profit private sector.

Process - Timely and Ongoing: It is recognized that the development of an ethics policy on partnerships will take time. CIHR was encouraged not to view the development of an ethics policy as the only goal or output, but to recognize that it should be part of a broader ethics process within which partners will function. Don't wait for a year or two to develop the perfect policy: be a learning organization. Partnerships have been occurring on an ad hoc basis for many years and experiential learning is going on right now. The earlier that CIHR can systematize these lessons and make them accessible to practitioners the better.

Learn From Others: Other federal departments/agencies and organizations external to the federal government have been working within a partnership model for many years. Effort should be taken to build on work already in practice, such as the Best Practices in Government of Canada Partnering document produced by PWGSC, the Industrial Research Assistance Program at the National Research Council, the Canada Foundation for Innovation, the Treasury Board Secretariat's public interest test (19 questions), Health Canada's risk management model and partnership policies within the private sector.

Appendix A: Workshop Agenda

CIHR Workshop: Ethics Policy on Partnerships with the for-profit Private Sector

Monday, March 19- Tuesday, March 20, 2007
Ontario Room, Lord Elgin Hotel
100 Elgin Street, Ottawa, ON K1P 5K8
Tel: 613-235-3333
Toll Free: 1-800-267-4298
Fax: 613-235-3223
Web: http://www.lordelginhotel.ca/

Workshop objectives:

Day One - Monday, March 19, 2007
9:00 - 9:15 Introduction
Burleigh Trevor-Deutsch (CIHR Ethics Office)
9:15 - 9:25 Workshop format & protocol
Bob Plamondon (Workshop Facilitator)
9:25 - 10:30

Presentations & plenary discussion:

Partnerships - general principles
Speakers:

  • Doug Davidge, A/Director, Advertising Coordination & Partnerships Directorate, Public Works Governments Services Canada
  • Diane Finegood, Scientific Director, CIHR Institute of Nutrition, Metabolism and Diabetes, Simon Fraser University
10:30 - 10:45 Break (with refreshments)
10:45 - 12:00

Presentations & plenary discussion:

Ethical considerations, pitfalls and opportunities of CIHR partnerships with the Private Sector
Speakers:

  • David Castle, Canada Research Chair in Science and Society; and CIHR Standing Committee on Ethics member
  • Jean Marion, Director, Scientific Affairs, Canada's Research-based Pharmaceutical Companies (Rx&D); and CIHR Institute of Circulatory and Respiratory Health Advisory Board member
12:00 - 1:00 Lunch (in plenary room)
1:00 - 2:15

Presentations & plenary discussion:

More perspectives on ethical considerations, pitfalls and opportunities
Speakers:

  • David Brener, Director, Research Translation Unit, CIHR
  • Janet Atkinson-Grosjean, Senior Research Associate; Leader, Translational Genomics GE3LS Project; The W. Maurice Young Centre for Applied Ethics, University of British Columbia
2:15- 2:30 Break (with refreshments)
2:30 - 3:30 Break out groups
3:30 - 4:25 Reports from break out groups & plenary discussion
4:25 - 4:30 Participant survey of viewpoints, issues
4:30 Adjournment
Day Two - Tuesday March 20, 2007
9:00 - 9:20 Plenary report on participant survey
Bob Plamondon (Facilitator)
9:20 - 10:30 Break out groups: Policy development and next steps
10:30 - 10:45 Break (with refreshments)
10:45 - 11:45 Reports from break out groups & plenary discussion
11:45 - 11:55

Conclusion
Burleigh Trevor-Deutsch (CIHR Ethics Office)

11:55 - 12:00 Workshop evaluation forms
12:00 - 1:00 Networking lunch (in plenary room)
1:00 Adjournment (CIHR leads are available until 2:00 pm)

Appendix B: List of Speakers and Participants

Private sector: Industry

Jean Marion (speaker)
Director Scientific Affairs
Rx&D - Canada's Research Based Pharmaceutical Companies

Kevin Fehr
Director, Rx&D Alliances
GlaxoSmithKline Inc.

Academia-Ethics/Law:

David Castle (speaker)
CIHR Standing Committee on Ethics member, and Canada Research Chair in Science and Society
Department of Philosophy
University of Ottawa

James R. Brown
Department of Philosophy
University of Toronto

Janet Atkinson-Grosjean (speaker)
Senior Research Associate,
The W. Maurice Young Centre for Applied Ethics,
University of British Columbia

Ron A. Bouchard
Doctoral of Juridical Science candidate
Faculty of Law, University of Toronto

Federal Government/Agencies/Networks:

Doug Davidge (speaker)
A/Director Advertising Coordination & Partnerships Directorate,
Consulting, Information & Shared Services Branch,
Public Works and Government Services Canada

Mary Bush
Director General, Office of Nutrition Policy & Promotion,
Health Canada

Marie Émond
Research Ethics Coordinator,
Natural Sciences and Engineering Research Council of Canada

Jean E. Saint-Vil
Senior Program Manager
Networks of Centres of Excellence

Robert Davidson
Director, Programs and Operations,
Canada Foundation for Innovation

Provincial Funder:

Marielle Gascon-Barré
Vice Présidente et directrice scientifique
Fonds de la recherche en santé du Québec

Non-Governmental Charities/Foundations:

Cathleen Morrison
Chief Executive Officer,
Canadian Cystic Fibrosis Foundation

Josée Guimond,
Director of Medical/Scientific and Community Programs
Canadian Cystic Fibrosis Foundation

Gavin Turley
National Executive Director,
The Kidney Foundation of Canada

Linda Piazza
Director of Research,
Heart and Stroke Foundation of Canada

John E. Fleming
President and C.E.O.
The Arthritis Society

David Hawkins
Interim Vice President,
Medical and Scientific Affairs
The Arthritis Society

Universities: Research Offices

Bill McBlain,
Senior Associate Vice-President (Research)
University of Alberta

Barbara Cox
Director, Office of Research,
Memorial University

Canadian Institutes of Health Research (CIHR)

CIHR Institutes:

Diane Finegood (speaker)
Scientific Director,
Institute of Nutrition, Metabolism and Diabetes (INMD)

Louise Desjardins
Assistant Scientific Director
Institute of Musculoskeletal Health and Arthritis (IMHA)

Louise Poulin
Assistant Director, Partnerships and Int'l Relations,
Institute of Human Development, Child and Youth Health (IHDCYH)

Richard Brière
Assistant Director
Institute of Neurosciences, Mental Health and Addiction (INMHA)

For the Institute of Population and Public Health (IPPH):
Dr. Roberta Ferrence
Executive Director, Ontario Tobacco Research Unit, Centre for Health Promotion, University of Toronto, and
Senior Scientist, Centre for Addiction and Mental Health

Central Portfolios:

David Brener (speaker)
Director, Research Translation, Research Portfolio

Linda McKenzie
Deputy Director, Innovation Programs, Research Portfolio

Rosa Venuta
Senior Policy Advisor, Partnerships Unit, Knowledge Translation

Carmen Constantinescu
Evaluator, Evaluation and Analysis Unit

Kathryn Andrews-Clay
Director, Partnerships Unit, Knowledge Translation

Nathalie Gendron
Deputy Director, Program Delivery-INMHA, INMD, ICRH,
Knowledge Creation, Research Portfolio

Joanne Ledger
Associate, Team and Project Systems, Research Planning and Resourcing,
Research Portfolio

Manon Lechasseur
Acting Senior Public Affairs Advisor- Issues Management, Marketing and Communications

Burleigh Trevor-Deutsch
Director, Ethics Office

Jaime Flamenbaum
Senior Ethics Policy Advisor, Ethics Office

Sheila Chapman
Senior Ethics Policy Advisor, Ethics Office

Genevieve Dubois-Flynn
Senior Ethics Policy Advisor, Ethics Office

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