Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology

Issue 11 - Evidence

The Standing Senate Committee on Social Affairs, Science and Technology, to which was referred Bill C-13, to establish the Canadian Institutes of Health Research, to repeal the Medical Research Council Act and to make consequential amendments to other Acts, met this day at 3:45 p.m. to give consideration to the bill.

Senator Michael Kirby (Chairman) in the Chair.

[English]

The Chairman: Honourable senators, we thank our witnesses and everyone involved for their cooperation in terms of scheduling on such short notice, including having one of the witnesses come in from Vancouver.

Our first panel is composed of Dr. Henry Friesen, Mr. Peter Glynn, Ms Maria Knoppers, Ms Janet Halliwell and Mr. Ian Shugart. I bid you all welcome.

Dr. Henry Friesen, Chair, Canadian Institutes of Health Research Interim Governing Council; President, Medical Research Council of Canada: Honourable senators, you have before you today Bill C-13, an important and significant piece of proposed legislation. Research, particularly in health, affects all our lives and is the basis of progress. That progress can be measured in many ways, particularly if one takes a somewhat historical perspective.

There is currently the same number of hospital beds in British Columbia as there was 30 years ago. The management of Canada's health care system has benefited greatly from progress made through research. Indeed, I would assert that without that progress, Canada's health care system would be in jeopardy.

Bill C-13 represents the hard work, discussion and consensus that were forged throughout the last year and a half by the research community and beyond. It is the product of a unique process developed latterly by the interim governing council. The members of this council were appointed by the Minister of Health and consist of representatives from a range of constituencies including researchers, university presidents, the voluntary sector, federal and provincial agencies, and the private sector. We produced recommendations that are the basis of this bill. It is a new way, I suggest, of writing legislation.

Bill C-13 will have a transformative impact on health research in this country. It will modernize Canada's health research enterprise, building on the platform of excellence created over 40 years by the Medical Research Council.

The scale and scope of the bill are breathtaking and historic. It is truly transformative in several dimensions, such as the organizational reach. Bill C-13 will, for the first time, allow systemic input from a wide range of sectors. The voluntary sector, including interest, community and consumer groups, will contribute to the policy-making advice through the various institutes that will be created. That is a powerful voice and a new force.

Consider the representatives from the voluntary agencies, who in turn represent thousands, indeed millions of Canadians and their aspirations, hopes, interests, and now provide representation in forming and shaping the health research priority and the timetable of the new entity.

Bill C-13 is enabling and facilitative. That is important because science and understanding change. It would be very difficult to write in prescriptive language the undertakings for research that would drive the agenda for 20 or 30 years from now. No one has the foresight to imagine the scale of changes that will occur.

The objective of CIHR is clearly stated in the bill. It is singular and deliberately stated -- to excel according to internationally accepted scientific standards in the creation of new knowledge -- which is insufficient by itself. Unless that new knowledge is translated into improvements to the health of Canadians, strengthening the Canadian health care system, and seeing the development of new products and services, it would be incomplete. The return on the public investment in that translation is improved health. That is a key statement in the objective. Therefore, creating new knowledge, investing in research, supporting our best and brightest, and creating the sort of environment that gives real meaning to the Prime Minister's statement in response to the Speech from the Throne, indicate that Canada will be the place for the creation of new knowledge in the 21st century. That is the goal that this bill will achieve.

Not only improving health care services, but also creating an economic opportunity for this country is an important dimension. It has often been misunderstood. This bill is not to allow investment in support of the private sector, but rather to support academic research that will, inevitably, deliver new ideas and products. These will be developed for the benefit of all Canadians and the Canadian economy by creating new jobs in this country.

For example, it was not long ago that one of the star researchers at the University of British Columbia received a small grant to develop new chemicals that would be helpful in treating macular degeneration, the leading cause of blindness in people over the age of 50.

Today that company is a $6-billion capitalized company. It is the largest bio-tech company in Canada and has created jobs for the best and brightest coming out of our schools. This, in turn, will affect the health issues in our lives. In the process, this company will create wealth that will, in turn, provide the tax base that will support CIHR.

Already we have begun to see the change in perspectives that is part of the transformative nature of CIHR. Several charts, maps of Canada, that were handed out indicate that before CIHR, we had a localized, often geographically based research enterprise that was unlinked. The CIHR is to create an integrated vision for health research. That vision includes fusing the best, creating networks of opportunities, linking community interests, linking researchers, and seeing Canada mobilize and galvanize its best minds in support of research that will affect the lives and the health of Canadians.

In the first programs, 1500 researchers who were linked to communities and their interests -- district health councils, women's health groups and various other groups -- combined their efforts to help set an agenda. In another program, interdisciplinary health research teams were forged. As well, almost 1,500 Canadian scientists chose to come together in various ways to forge an agenda that would affect the health of Canadians. That is just the beginning.

The activities that have been unleashed by CIHR, once fully operational, will fundamentally transform the Canadian health research enterprise. There is an excitement about this bill, and I, along with my colleagues, look forward to addressing issues and answering your questions about Bill C-13.

Mr. Peter Glynn, Member, Interim Governing Council, Canadian Institutes of Health Research; Chair, External Relations Committee, Heart and Stroke Foundation of Canada: Honourable senators, it is a pleasure to appear in support of Bill C-13 as a member of the interim governing council. I am also on the board of the Heart and Stroke Foundation of Canada, which is the largest funder of cardiovascular research in the country. As well, I am the President and Chief Executive Officer of Kingston General Hospital, which is a major teaching hospital affiliated with Canada's research-intensive Queen's University, where I see, on a daily basis, the impact on health that research can achieve.

I will talk about three important themes in the bill: partnership, commercialization and knowledge management.

In 1998, the Prime Minister said, "If you invite me back four years from now, I hope to be able to say that your government helped make the transition to a knowledge-based economy and took the steps necessary to keep the best and brightest in Canada." These challenges require a partnership at all levels of government, the private sector, trade unions, the voluntary sector and non-governmental organizations. We must all work together.

Partnership is important to CIHR because its legislative mandate and mission require it to be more than a granting agency. It must become a coordinator, a consensus builder, a facilitator of change, a catalyst, an ethical adviser, a clearing house of authoritative research and information, and a powerful voice for Canadian health research. Partnerships are the foundation on which CIHR will build to meet these challenges.These partnerships will assist CIHR in achieving the objective of selecting and supporting excellent basic and applied research in health sciences, clinical applied research, health care systems, and the social, cultural and population dimensions of health. They will help strengthen and deepen research efforts, building a critical mass of expertise to focus on vital research areas; they will increase the rate of dissemination of knowledge to the various communities with an interest in health and health care delivery, leading to better health policies and practices; they will help find swifter applications of CIHR-supported research results through partnerships with health care providers and health care systems; and they will assist in building bridges between the public and private sectors to encourage the effective translation of research results to benefit Canadians. As Mr. Friesen indicated, the partnership will capture the economic benefit of publicly funded research and contribute to the creation of jobs and wealth for Canadians.

Partnership can mean joining forces with other organizations, sharing funding of research initiatives, or levering the funding of other bodies into CIHR projects. It can mean jointly setting research agendas and policies, and working together to improve the understanding of the public on important health issues. Partnership can be cooperation in getting research discoveries and new technologies into practice and use. It can also mean encouraging the collaboration of Canadian researchers across sectoral, national and international boundaries, and between different disciplines. I expect that all CIHR institutes will be involved in appropriate partnership activity. I believe they will be expected to report annually on their successes and the results of their partnership activities to the governing council of CIHR.

The second theme is commercialization. The investments of federal governments in health care are intended primarily to improve the health of Canadians and the functioning of the health care system in Canada and around the world. However, the breakthroughs and the new knowledge generated during the course of CIHR-funded research projects, can and will lead to opportunities for new commercial products, drugs, diagnostics and methodologies. CIHR will encourage the commercialization of these opportunities within Canada to the benefit of Canadians. CIHR will encourage the exploitation of Canadian discoveries worldwide. This will be done in a manner that is consistent with the principles of academic freedom, peer review, wide dissemination of research results through timely publishing, and the public good through public expenditures.

On the topic of knowledge management, as Dr. Friesen has said, there is an emphasis in CIHR on the application of research results. This is a new feature.

Knowledge management means ensuring that the results of research are accessed by all relevant constituencies, professionals, the public, and government, and that they are an integral part of the research process. It means ensuring that the knowledge is shared within and between the institutes to increase a synergy amongst researchers and research. It means the utilization of relevant external knowledge to inform CIHR knowledge and knowledge production, and it means working with groups who currently disseminate health research information to various audiences.

The end goal of all research is to translate findings into knowledge that will improve the health of Canadians and of people all around the world.

Ms Bartha Maria Knoppers, Member, Interim Governing Council, Canadian Institutes of Health Research: Thank you for this opportunity. Mr. Chairman, honourable senators, I will try to be brief. To the best of my knowledge, this piece of proposed legislation is an historical first. You will note that not only the preamble exhorts legislators and Canadians to take ethical issues into consideration, but that there are three substantive articles on ethics in the bill.

Paragraph 4(e) speaks about promoting and undertaking research at the highest international standards of excellence and ethics. Paragraph 4(g) addresses fostering the discussion of ethics, as well as the application of ethical principles to health research. Paragraph 5(d) addresses the need to monitor, analyze and evaluate issues, including ethical issues pertaining to health research.

If it is an historical first, it will be the first time ethics have been addressed, not only in the preamble, but as an imposed, substantive legislated duty. If this bill is approved by Parliament, how can the challenge be met?

The CIHR created a subcommittee, which I had the pleasure to chair. We undertook a consultative process with partners already in place from a wide array of organizations in Canada, such as the Canadian Council on Animal Care, the Canadian Biotechnology Advisory Committee, and the National Council on Ethics in Human Research, as well as the various bioethics researchers and institutes across Canada.

We have come up with the following proposal as a way to implement the challenge of this proposed legislation. First, rather than creating a specific institute, we thought that the issue of ethics was so central that it should be integrated throughout CIHR.

How do we propose to do this? There would be a committee on policies and procedures within CIHR itself. There are very important ethical issues to do with conflicts of interest, commercialization, integrity, safety, that go across all institutes. We need an internal, coherent policy that would guide all researchers, no matter in what field, and no matter where they are working and with whom. The policy would need to cross national boundaries. This gives them tools with which they can talk to other researchers, negotiate with companies and universities, and so on.

Second, we also wanted to establish an advisory committee within the CIHR. We do not have a national committee on ethics, as other countries do. We wanted an advisory committee on some of the macro-ethical issues, some of the more philosophical yet very important issues that are neither research nor discipline specific, nor even animal or human specific. Examples of these types of issues include obligations to future generations, allocation of resources, and possibly even global bioethics, if one day we can recapture our world leadership in terms of international obligations.

To underpin these two structures -- the policies and procedures committee and the advisory committee -- we would require a strategic initiative called the "ethics office". This would be both a clearing house and an information-dissemination centre, as well as a way for researchers across Canada to have a place of contact not only within their own institute, but outside of CIHR as well.

Each institute's advisory board, as well as the governing council of CIHR itself, would be required to have persons with ethics expertise as part of their membership. Furthermore, proposals going through peer review would be required to take ethical considerations and applications, present and future, into account.

There would also be a specific budget for ethics scholarship. There is a great debate in the country right now in the ethics community about whether we are only of service to different research endeavours, or whether we constitute a separate discipline. We question whether we should be moving research forward, or even slowing it down at certain points.

To that end, we suggested that the future governing council dedicate 5 per cent of its research budget to health ethics research. In other words, there would be a dedicated budget that would ensure that ethics would not be an add-on, would not be a cover-up, but would be an integral part of research within CIHR.

We propose that ethics be central and integrated. Should our advisory committee come into existence and do its work, ethics should be prospective. It should not be only reactive, as we see every week in the news, but actually thinking ahead of scientific advances in order to prepare for them, or even to discuss whether we should be going in certain directions, and the allocation of funding to where the priorities should be.

Finally, I know that the current interim governing council has made ethics very central. It is and has been heartening for me to work with a group of individuals who are committed to that. When CIHR has both central and integrated discussions on applications, implications and prospective ethics, we can begin to meet another level of obligations, to the international community at large. It is my personal view that Canada has a lot to offer the world in terms of global bioethics and CIHR is a starting point.

Ms Janet Halliwell, Director, Corporate Liaison and Innovation, Social Sciences and Humanities Research Council of Canada: Honourable senators, I am pleased to be able to appear before you in support of Bill C-13. I am wearing two hats. I appear on behalf of Marc Renaud, the president of the Social Sciences and Humanities Research Council of Canada, and as the co-ordinator of the institute design and creation activity, working very closely with the one of the co-chairs of the interim governing council and the members of the council itself.

I will be talking about two things. First, the role of the social sciences and humanities within CIHR, and second, the issues of institutes.

From SSHRC's perspective, and that of the community we represent, the creation of CIHR is an enormously important and exciting opportunity. The bill sets out a vision of an integrated health research agenda that crosses disciplines and explicitly includes social sciences, humanities, and the health systems and services.

How large is the community of researchers who will contribute their talents to the health research agenda? This time last year, we could not answer that question. We now know that there are over 100 institutes with a major research thrust in the social sciences and humanities, or health systems and services. There are over 2,000 active researchers today, as well as many others who would deploy their talents to this area of endeavour.

There are individuals and groups who would recognize the potential to bring their disciplines -- sociology and theology, law, psychology, management, linguists, as examples -- to bear on health problems and issues.

An integrated research agenda is not simply a future dream. As Dr. Friesen has indicated, the last year has brought many new partnerships and networks across Canada among the diverse research communities. New partnerships have been founded in the development of institute proposals, in the development of slates of institutes, and in the development of programs that would allow the communities to work together, as well as in the responses to those programs.

It has not been just a collaboration forged within the research community itself. There have been bonds built between the staff of the Medical Research Council and the Social Sciences and Humanities Research Council. There is mutual respect for very different scholarly activities, traditions, and approaches, but also mutual commitment to the objectives of CIHR and to rigorous peer review.

Most important for the community, CIHR means an opportunity to expand the range of research on a broad set of health questions to examine such things as the links between health and health status, on one hand, and human behaviour and social and cultural processes on the other.

I will give just one example to indicate why we must move beyond the dramatic successes of single-discipline research, which will continue to be a dominant element of our activity. Many complex health problems are interdependent in terms of the social, behavioural, and biological processes that influence them. Research across disciplinary lines that integrates various levels of analysis represents one of the huge frontiers.

For example, the prediction of coronary heart disease considering only one set of risk factors would be insufficient to explain the variance in that disease. We now know that we must work in the areas of socio-economic status; social support; behavioural, including physical activity and smoking; and organ, such as low-density lipoproteins and hypertension, to explain variances.

This brings me to the most important element; that is, how to create an environment in which researchers will rub shoulders with and benefit from the wisdom and insight of others. This is, of course, the opportunity of CIHR, the community of the institutes, and the related structures that are part of it.

The institutes are certainly the key instrument to propel CIHR past the vision of the traditional granting council. You have access to the interim governing council papers on institute design, so I will not reiterate what is there but only highlight the fact that the institutes are virtual. They will have a scientific director and scientific advisory boards that will provide them with guidance and the linkages with their partners in the community and other health stakeholders.

These institutes will function as unique focal points of leadership, participation, partnership, and priority-setting. However, any one institute does not exist in isolation. Rather, it is part of a larger landscape of institutes that provide an appropriate home for a full spectrum of health research and an effective balance of activities among disease and health, prevention and cure.

Equally important, institutes are only one among a portfolio of mechanisms in CIHR. They exist within an interactive and adaptive system of programs, peer review systems, partnerships, standing committees of CIHR, and offices, each of which will ensure a critical focus on an important element of the health research agenda and the modes of doing research.

Consider two of those structures very briefly. With regard to offices, as Dr. Knoppers mentioned, ethics is a prime candidate. These are designated focal points in the secretariat for specific strategic issues and priorities that transcend institute mandates and where there is need to ensure that those issues permeate all of the institutes.

Standing committees will be created by the governing council for many activities. Some will centre on core corporate functions, some on critical policy initiatives such as ensuring the effective inclusion of the major sectors of health research in each of the institutes and their continuing health. They may focus on how best to develop strengths in under-represented areas and to nurture future institute proposals.

I will say a few words on institute creation. There is currently at work a subcommittee on institute creation that is examining what sort of advice it can give to the governing council on the overall shape of the institute portfolio within CIHR. It has articulated a set of criteria and parameters for the functioning of those institutes. One of those is that there would be no more than 10 to 15, and that the institutes would be broad. Clearly, we will not be able to have an institute for each of the major health issues within Canada, so we are looking at creative groupings.

The subcommittee started consulting with Canadians last fall and received over 80 very significant submissions that revealed an incredibly rich interest in where CIHR was going and a high degree of convergence. The response was overwhelming, both in number and in the richness of thought and activity. Many of the responses incorporated consultations of hundreds of researchers and stakeholders behind the paper that was produced.

There was significant convergence on many issues, including the need to maintain fundamental research excellence within the institutes while focusing on health issues for Canadians, the importance of adaptability and flexibility of the evolutionary nature of institutes, and the need to establish a mechanism of interaction among institutes in order that they will not sit as silos.

The subcommittee is in the process of incorporating and evaluating this input. Some things are clear at this stage, including the fact that there is no unique organizing framework for the institutes, that there are valid and appropriate approaches in such areas as studying disease, health issues, human physiology, and stages of the life cycle. It is also clear that there are a number of very specific strategic initiatives that require the particular attention of the governing council. They include ethics; aboriginal health; rural health, which affects one-third to one-fifth of Canadians; and women's health.

In concluding, I will use women's health as an example of how the subcommittee and the interim governing council are seized with the importance of gender and sex as variables in health research. Achieving the CIHR objective will demand effective consideration of this, but whether that will translate into an institute specifically focused on women, or some other structure, remains to be determined. It is indeed one mechanism, but even with an institute, cross-cutting structures would be required for effective integration throughout CIHR.

A strong office embedded in the corporate structure could provide strategic leadership and daily interaction with a peer review system. Program structures and standing committees could be integrated into an adaptive system. This is true of all of these special areas that must be looked at. The interim governing council will be looking at how best to balance these and provide some insight as to how they could be shaped into an overall, functioning CIHR. Certainly, future evaluations of CIHR will be looking at how well it performs on those dimensions.

I wish to reiterate the extent of the support of SSHRC for this initiative and the fact that we will continue to be a partner in the years ahead for CIHR.

Mr. Ian Shugart, Assistant Deputy Minister, Health Canada: Honourable senators, it is now widely accepted that an integrated approach to health is essential to creating healthy individuals and communities. In order to accelerate discovery, we have to broaden what we know and apply it for the benefit of Canadians and contribute, directly and indirectly, to more effective health care for Canadians. As you have heard this afternoon, research is needed from several perspectives, and often in combination from these four areas that CIHR brings together for the first time systematically in Canada: biomedical research; clinical research; health services and systems research, which deals with understanding how services and systems are organized and how these things can be delivered more effectively, what works and what does not; and research on the determinants of health within communities and populations.

This afternoon I want to provide a summary of what you have heard, and also the perspective of the Minister of Health and Health Canada. The CIHR legislation, as it is proposed, explicitly embraces the range of approaches to health research required to achieve improved health outcomes for Canadians, and it is outcomes in which we are really fundamentally and ultimately interested.

It is important that you know that Health Canada, and indeed other departments of government, will be a key partner and client for research evidence generated by CIHR. It is our job to ensure that research evidence is well utilized in the health policy dialogue, which I know will be of particular interest to this committee in the days ahead, and in turn that gaps in knowledge and information are identified, articulated, and addressed by appropriate research mechanisms.

I am not speaking of command and control science, I am speaking of identifying problems. Fundamental to the research enterprise is identifying the question that is important. Health Canada sees its role, in part, as contributing to the identification, the articulation of questions. Therefore, we take a particular view of the tremendous opportunity that is represented by CIHR.

[Translation]

In short, health research today looks at a whole range of matters affecting the population's health. It is based on the intellectual contributions of people working in all kinds of disciplines in sciences, engineering, social sciences and social studies.

As is often the case in matters of health, though it is important to allocate more funds, that is only part of the total solution, which brings me to Bill C-13. The latter gives a whole new vision of health research through the creation of these institutes.

It describes a modern design that will harmonize far more closely and strategically health research and the Canadian population's priorities in matters of health.

We hope to see a new opportunity for all Canadians to identify with health research.

[English]

It is important that we see an opportunity for Canadians to understand and to see themselves in the research enterprise. That has always been the case, particularly in the work that the voluntary sector does in research, but we believe there is a tremendous opportunity to deepen and to broaden that, and indeed to make the case continuously for how research is fundamental to advances in health.

The bill establishes a research enterprise that will get people from different research backgrounds working together in common cause. The bill will be oriented to the health priorities of Canadians. Third, it will be mandated not just to support research, but to get the results of that research out into the hands of health professionals, other researchers, policy and program officials in government and the health system, including our department, and into the hands of Canadians.

Health Canada is poised to be part of that future enterprise. We are committed to working closely with CIHR as a partner to help to translate the new knowledge that is gained as a result of research into better health for Canadians. We have a particular interest in the areas of health information and health information systems, knowledge management and exchange, renewal of health care, and the science of public health and safety.

The objective for CIHR emphasizes the outcomes that CIHR is designed to achieve through a revitalized health research enterprise that will accompany Canada into the 21st century: a renewed vision of the central role of research in evidence applied to health decisions, these mechanisms that bind researchers and prospectives, provincially, nationally, internationally, both to each other and to the issues that we are addressing. It is important, given Canada's geographic and cultural diversity, that we create an enterprise that recognizes diversity in health outcomes and in approaches to health and disease.

CIHR, in summary, provides an unprecedented opportunity to link health research to national and provincial health priorities and to ensure the effective transfer of research findings to inform policy and programs. Partnerships between the institutes, and a broad range of health research partners, will be important in creating synergies and focusing efforts to increase overall benefits to Canadians. As you have heard, linkages with the voluntary sector, which reflect the involvement, interests and concerns of many Canadians, will be essential to its success.

Our vision for the future of the Canadian Institutes for Health Research is of a flexible, responsive research enterprise that continuously renews itself through the evolutionary process of science, and through partnerships with the broad range of players in health research.

Senator LeBreton: On the linking together -- and Mr. Glynn, in his remarks, referred to all levels of government -- are there provincial agencies or community-based agencies that will be brought under the umbrella of CIHR? Were these agencies consulted by the interim governing council? Further to that question, will any of these agencies be represented on the new governing council?

Dr. Friesen: The immediate, short answer is yes to representation and consultation. Several of the provinces have major research agencies, such as Alberta and Quebec. The presidents of both those organizations were on the interim governing council throughout the last year and participated actively. We have had, over a period of time, a rich collaboration with both of those agencies, as well as some of the smaller ones like the Nova Scotia Research Foundation, the B.C. Health Research Foundation, and the Manitoba Health Research Council. There has been, at an operational level, a very extensive involvement engagement. Also on the interim governing council was the deputy minister of Ontario, who is an active contributor.

There will continue to be, without question, complementarity of positioning, a very healthy collaboration that has existed and in my view will continue and expand.

In terms of appointments, the minister is on record as saying every province will be represented on a governing council.

Mr. Shugart: I wish to add the point that the Ontario deputy minister was chosen to join the interim governing council through a process of being identified by his colleague, a provincial deputy.

There has been a growing attention over the last years among provincial ministers of health to research activity in Canada, and I anticipate that that will continue. Historically deputy ministers and ministers of health have not always focused on health research in their frequent get-togethers. I believe that is changing significantly as there is a greater appreciation of the role that research plays in health overall.

Senator LeBreton: Will the valuable research work of the various agencies in the provinces or communities be tied in? Will it all be tied in under the umbrella of the new agency? I am not sure how it would all be linked together.

Dr. Friesen: Let me try to give you the portrait. In an integrated portfolio of research support in Canada, in order of size, the federal government is the largest. The voluntary agencies in aggregate are the next largest contributor in the public sector. They almost equal the federal government's investment level. The provincial agencies run a somewhat distant third.

There is less likely to be a tightly structured integration than an informal collaboration, both in terms of the various institutions and the scientists in those institutions indicating to CIHR what support they are getting through the provincial avenues. They would be seeking to position their request to the CIHR in a strategic way to avoid the duplication that none of us would support.

Senator LeBreton: Have you looked at other countries? Are there similar institutes in other countries, and if so, as part of your consultative process, did you consult with these countries, or analyze the work that they have been doing? Or are we unique in this?

Dr. Friesen: We have indeed consulted, and quite widely. We visited the National Institutes of Health, which is the U.S. equivalent. It is structured differently but has some similarities. It has a very long history, over 100 years of performance. It is held up as a world standard in terms of scope of investment.

The discussions that we had there were very informative in signalling what works. We discussed the notion that if they had the opportunity to start again, what would they do differently, what changes would they make. That dialogue was most interesting. They shared with us our sense of excitement, reflected back. They imagined how they would proceed if they had a clear slate.

The NIH, a huge private foundation that is endowed at about $14 billion, is different. It is a network. Again, there were some valuable lessons. It was most instructive to hear how important it was to network and encourage mechanisms to allow scientists from different perspectives to come together. A number of new directions flowed from those interactions.

We also heard from the architect in Britain of the research component in the National Health Service. Through his leadership, the U.K. government directed 1 per cent of their total health care bill for the National Health Service research portfolio. A good example of how they were going to do that was an extraordinarily interesting program with the descriptive acronym of GRIP, Get Research into Practice.

There is opportunity to learn. Bill C-13 describes an important mandate for CIHR to seek and seize international collaboration and opportunity. Science, more than most things, is international. Canada produces approximately 4 per cent of the world's knowledge. That means we can leverage in 96 per cent to our advantage. That is the scale of the opportunity.

Senator Callbeck: I want to ask a question about the provinces. There has already been a question about the relationship between CIHR and the provinces. I want to pursue that a bit because, Mr. Friesen, when you answered, I think you talked about Nova Scotia, British Columbia, Ontario, and Quebec.

The criticism that I have heard is that the provinces have not been consulted enough. Do you think that is fair? Have all the provinces been consulted? If so, how?

Mr. Shugart: The main forum, if you will, for what I might call formal expression of the views of provincial governments has been through the conference of ministers of health and deputy ministers of health. CIHR has, in fact, been explicitly discussed in those forums. There has been opportunity for questions, and that opportunity has been taken.

Mr. Lauzon, as I mentioned, formally represented his provincial colleagues, all of the provinces and territories, on the IGC. It would be fair to say that he was quite solicitous of his colleagues' views and input.

That would be the formal vehicle for the expression of provincial views. I think the reaction from the provinces, as we would perceive it, has been that this indeed is a tremendous opportunity for the country as a whole.

I think it would be fair to say, and it would be quite understandable, that some smaller provinces, particularly those without medical schools within their borders, would be anxious that researchers in their communities not be disenfranchised from the research activity of CIHR. It is the actual design of CIHR to bring together researchers from a variety of disciplines. That design feature creates a tremendous, new opportunity for those jurisdictions that have perhaps not been substantially involved in health research to become involved. Activity will not be limited to researchers from medical schools.

Technically, it never has been limited. However, there has been a flow of research funding, understandably, to those jurisdictions with medical schools. That is a tremendous new opportunity for social scientists, for those in other aspects of the life sciences, environmental sciences, for example, to be contributing and to be part of the research enterprise.

Dr. Friesen: I have, during my travels, met with every ministry of health and economic development throughout this country, including the Atlantic provinces, including your province.

We recognized that, if we really believed research was important to the health of Canadians, every province should see development of a research capability locally. We put that forward as part of an early phase stimulus. Some of the provinces, which Mr. Shugart has referenced, have not been as fulsome in their development, including Prince Edward Island and New Brunswick. We proposed a regional partnership initiative to kick start the opportunity. That was very well received.

In the case of Prince Edward Island, the president was delighted to see the investment. We have now these stimulus initiatives with Saskatchewan, Manitoba, New Brunswick, Nova Scotia, and Prince Edward Island. These will help us see capacity grow and develop. The initial response has, in the case of Saskatchewan, doubled their research investment through the precursor agency, MRC. Undoubtedly, with CIHR, that will be expanded and flourish even more.

Ms Halliwell: One additional area of consultation with the provinces was in the institute creation activity, during which there were specific letters sent out to the deputies of Health, as well as the deputies of Education, in each of the jurisdictions to be sure that they were aware of the opportunity to provide their insights and input.

We did receive fairly good and substantive responses from about 50 per cent of the provinces.

Senator Callbeck: I have a question on the Centres of Excellence. How will they fit in and what will be the role of CIHR there?

Dr. Friesen: The network of Centres of Excellence is a program with a specific mandate to forge linkages in science with a clear expectation of seeing discoveries developed for commercial gain and benefit. The scale, the scope of those networks, is very modest in comparison with the size or scale of an institute. I would see the networks actually being an integral part of a CIHR portfolio. For example, if there were an institute of genetics, the network of Centres of Excellence would fit in very well in structure and in support. Indeed, I could see some leadership skills forthcoming that have been forged and developed through the networks program. Those skills could be embraced and incorporated into an institute arrangement.

The Centres of Excellence are part of the Canadian landscape. They have very specific mandates and they will be complementary to the institutes.

[Translation]

Senator Gill: I would like to know what representation was expected and whether it is covered by the bill not only concerning the scientific disciplines or the provinces, but mainly concerning the representation of social groups. You spoke of women and Natives in the different disciplines, but is there anything provided for to ensure adequate representation?

[English]

Dr. Friesen: The bill speaks of appointments of women and men who represent the diversity of perspectives that should be seen as part of an institute. There are several ways of viewing representation on the CIHR structure. One is, of course, at the governing council. Those appointments will be made through a governing council appointments process.

It is instructive to hear what has happened in the first phase of the development of CIHR, in the appointments process that has been endorsed by this government. It is precedent-setting in its openness. There was a public call, with advertisements run for nominations for president and for membership in the governing council. In turn, the government then appointed selection or screening committees drawn from, again, a range of perspectives. There were university presidents and international representation. They looked at the selection of the president and provided advice to the Prime Minister's Office, narrowing down the larger list to a more manageable one, of which the selection committee said any person would be a worthy leader of the new CIHR.

In the case of the governing council, over 400 outstanding Canadians were nominated from all quarters. Again, a selection or screening committee was struck to narrow the list to a more manageable number. Again, the call to the screening committee was to make sure that the objective of CIHR is embraced by the richness of views that will be expressed by the individuals to be nominated, or recommended for possible nomination, to the governing council. Respect was paid regarding provinces, gender balance, linguistic requirements -- all of those normal Canadian considerations.

It is also clear that there is a very new dimension of representation that should be understood, and that is on the advisory boards. For example, if there were ten institutes, each with eight to ten members on the advisory boards, that is a great opportunity to see represented the variety of partners who are integral to CIHR. Those partners will be part of the mandate of one of those institutes.

For example, if there were an institute in the area of hormones, diabetes, nutrition, I could not imagine that individuals who are directly affected by the disease would not be represented on that board, either through a diabetes foundation or through the Diabetes Association of Canada.

On the subject of partnerships, I invite Mr. Glynn to expand further in answering your question about representation.

Mr. Glynn: One of the things that I emphasized was the opportunity for partnership with many different community organizations, with provincial governments, with the health charities, and with the national voluntary organizations, to accomplish mutual aims and goals. I would certainly see an opportunity for community groups, possibly a health charity, to partner with CIHR on particular health issues of concern to them. We are not necessarily talking about partnership here in terms of money. We are talking about partnership in terms of ideas, influence, translation of these research findings into practice, et cetera.

I see this as particularly important, as Ms Halliwell said, when we come to what one could call the social determinants of health as opposed to the bio-sciences. There are many communities -- and the aboriginal community is an important one -- where these partnerships can help form the linkages to actually apply the research results and learn from that application.

[Translation]

Senator Gill: There are doctors, nurses, psychiatrists and psychologists, but do you provide for any Native representation in certain institutes?

[English]

Dr. Friesen: Ms Halliwell referenced the issue of aboriginal health as being of great importance to Canada and Canadians. I could not imagine that one or other of the portfolio mechanisms that Ms Halliwell outlined would fail to engage and involve members of the aboriginal community, most importantly in priority setting, in translation, and in research opportunities. After all, members of the aboriginal health research community perhaps have the deepest knowledge of the concerns of the community they represent.

I believe that aboriginal health is a key dimension that government would expect to see addressed. A wise governing council would recognize that and would seek to implement that at the earliest opportunity and at the highest level. That must, in my view, involve both partnership and representation by members of the aboriginal community.

Senator Cohen: Ms Knoppers, you referred to paragraph 4(e), which has the objective of undertaking research that meets the highest international scientific standards of excellence and ethics.

Are there international standards that are currently accepted?

Ms Knoppers: Yes. As you are probably well aware, that is because it has now entered into the culture of the Nuremberg Code, which was more a reaction to abuses than it was a code for setting ethical standards. This was followed by the Helsinki Declaration of 1964, which has since been amended. Since that time, UNESCO, WHO, the Council of Europe, and the European Community have developed different standards for varying kinds of research that includes areas such as biomedics, epidemiology, genomics, paediatrics, and the more controversial area of reproductive technologies. They are quite active and have been vocal in representing these international endeavours. We, as a country, have not had that high level of productivity and visibility. We hope that CIHR will allow us to do that.

Senator Cohen: The changes are sweeping and it is sometimes difficult to comprehend the magnitude of the issues. Your enthusiasm is contagious.

The Chairman: Did you imply that there is an international set of standards for reproductive technology?

Ms Knoppers: No.

The Chairman: You did not mention cloning. Is there a set of standards for that procedure?

Ms Knoppers: There are various national endeavours. Article 18 from the European Convention on Biomedicine, 1997, specifically states that embryo research shall be limited according to the laws of each country because they were unable to achieve consensus with Germany and the U.K.

In addition, the Universal Declaration on the Human Genome and Human Rights, Article 411, mentions cloning as one activity that would be considered contrary to human dignity. That is a declaration, not a prohibition.

The Chairman: I suspect there will be legislation at a later time on the reproductive issue.

Senator Robertson: Will the issue of standards be addressed and in what manner? Will you be developing standards of excellence? Will you consider certain international standards? Who will be responsible for the development of these standards of excellence for all phases of research, and how will that be accomplished?

Ms Knoppers: I will start with the ethics. One way to ensure that we do not become insular or too comfortable with the subject ourselves as academics and researchers who work in partnership with communities and different interest groups, is through peer review. Projects, proposals, designs of institutes and so on, are submitted for evaluation by outside experts. Often these experts possess different viewpoints, have experienced different cultures, or perhaps derive from different disciplines, and thus bring new perspectives to the evaluations. That is an enriching process because you never know how high the bar will be. The European continent is extremely rich in both philosophical and ethical tradition, much more so than North America. That does not mean that we are not aware of it, but we do not have similar ethical and philosophical traditions integrated into our culture. That is why it is such an opportune moment.

Dr. Friesen: The gold standard for judging excellence is peer review and the process is used internationally. It is a never-ending effort to reach perfection, but it is a human activity. Therefore, it is inevitably fraught with failure and lapses from time to time. Nevertheless, that is the approach that is used.

In order to ensure that that international benchmark of excellence as reflected by peer review is respected, it is important to have a rich reservoir of talent in the pool of peer reviewers. Currently, in all the granting councils, the processes, while not identical, have a great deal of similarity. In the health research field, we call upon reviewers from all major countries to participate in the peer review, either through written commentary or, from time to time, in person. The truth is, there are many more good ideas than any agency can fund, even with the enhanced funding that is envisaged through CIHR. A good example of that would be the response to the transitional programs that I spoke about. We had 180 proposals and I suspect that we will be hard pressed to fund 20 of them. In order to establish which are the most productive and excellent, a rigorous process of peer review will define the greatest opportunity and the greatest excellence.

Senator Robertson: Will this also encompass the area of commercial health research? Will there be an interrelationship with commerce or does that stand alone? When you receive a product, for example, how will you market it?

Mr. Glynn: We do not see, first and foremost, CIHR owning the intellectual property. Universities have policies on that. However, CIHR should encourage the relationship and technology transfer. A number of universities have excellent technology transfer programs, and in our report on commercialization, there is reference to strengthening those endeavours and the capacity of individual researchers to understand how to move their bright ideas into practice. Also, there are numerous good programs around, such as the Natural Sciences and Engineering Research Council of Canada's technology partnership program, which is one example of a partnership that enables the taking of ideas to the next step. Another good example is the Canadian Medical Discoveries Fund in partnership with MRC to obtain funding through the private sector and venture capital for the actual commercialization of these ideas.

Senator Roche: In respect of international standards, I strongly support your comment that it could be helpful to have Dr. Knoppers back, in a discrete role, to discuss ethics in the long term.

I understand that the internationally accepted standards are the umbrella under which many things in paragraph 4 are permitted to be done.

I understand that these internationally accepted standards are standards on how research is done, as distinct from the ethics of the subject that has been researched. Am I correct?

Ms Knoppers: Most international guidelines, standards, directions, and declarations, unless they are of a legal nature, are worded as principles because they are meant to guide national legislators in making these principles come alive in their own countries. Therefore, these declarations and conventions are at a level of goals, setting out the purpose, the areas of endeavour where priorities should be set, such as solidarity and collaboration between countries, respect for dignity and diversity, and so on.

If countries that are members of these various international bodies, or even observers, such as Canada sometimes is, adhere to them, then the domestic legislation of those European countries that sign and ratify must be in conformity with the principles.

However, the other type of international directives, guidelines, and so on, tends to be more process oriented in terms of epidemiological research or clinical trials. We have extremely detailed international directives, the international clinical harmonization trials, for clinical trials that allow us to do trials in France, Germany, Canada, and the United States, all following the same process rules that you just mentioned, but those process rules are guided by shared principles. It works hand in hand that way.

Senator Roche: I think I understand that. With regard to what will actually be done, under paragraph 4(e) there is a vast array of research. I should like to concentrate for the moment on what we might call the "life issues". How will this research be done by the Canadian Institutes of Health Research? At the level at which we are operating in Canada, by what criteria will this body determine the ethical aspects of life issues?

Ms Knoppers: That will be determined at two levels. First, Canadian scholars from across the country, particularly in the social sciences and humanities -- theology, health care systems analysis, economics -- will be putting forward their own proposals. There is knowledge throughout the country. You need not be in a bioethics institute or even a research setting to be able to participate in the elaboration of ethics issues from conception to death, including many of the ecosystem, environment, and health services questions that we see in paragraph 4(e). The grassroots researchers are where the strength lies and from where the originality usually comes.

At the same time, we want a systemic approach within CIHR, an infrastructure approach in terms of guiding our researchers, so that those whose proposals do meet the standards of excellence would be bound by common ethics procedures and policies.

As well, we want to encourage self-standing research into ethics itself, not just "service ethics'. I do not like that expression because working with colleagues in different fields and disciplines is not just service; it is working together in an integrated way.

Senator Roche: Would it be within the mandate of the CIHR to pronounce on the ethics of certain subjects, that is, test tube babies, palliative care issues, abortion, the moment of conception? These questions are alive and hot in our country. I dare say that many Canadians would be interested in an expression of views on the ethics of these life issues.

Ms Knoppers: One of the structures we proposed was an advisory committee, in addition to the ethics policies and procedures, to review those very important issues about which Canadians are concerned. In the absence of a national ethics committee, we thought this was the opportune time to create a structure that would look at the larger ethical and philosophical issues you have mentioned.

I think that such a committee would be advisory. The government could refer issues that it wanted discussed to it. These are complicated and very topical issues. However, they also call for values in which people dearly believe.

Senator Roche: You do foresee the CIHR giving advice on the ethics of life issues?

Ms Knoppers: Yes.

Senator Roche: I do not know whether I am satisfied with that, but I am probably running out of time. I would like to know more, Mr. Chairman, about who will propound these views.

The Chairman: When we eventually have an institute that deals with those issues, I will be happy to have these people back, as I was implying earlier.

Dr. Friesen: Ms Knoppers has not mentioned that three councils have actually triggered a first for Canada in the world; that is, a tri-council policy statement on ethics as it affects human research. It is all-encompassing research from whatever domain it may be generated. That, operationally, is the framework of ethics that governs research undertakings.

The instrument that rules on the appropriate adherence to those ethics statements in the policy framework are the research ethics boards that are in place in each institution, be it the Kingston hospital, Queen's, or any other. Each research project must pass through that filter of research ethics boards whose composition is defined in the policy statement. That is the ethical safeguard for the research that will be supported by CIHR. In addition, at Ms Knoppers has mentioned, research dealing with the important questions that you have raised could be undertaken under the auspices of CIHR.

Senator Fairbairn: The issues I wanted to hear about are related to your comments on ethics and commercialization. You have, through your answers, thrown greater light on the ethics area, Dr. Knoppers.

My question relates to this area, and perhaps others as well. What built-in communication structure will there be in this operation? I sense your excitement, and I understand it. I hope that that same excitement and greater understanding can be moved through the levels of scientific research down to individuals in this country.

My colleague Senator Cohen said that she felt very unprepared in even discussing these issues with which we as legislators are often bombarded. At the same time, we do not have the qualifications to give advice, answers, or indeed to understand a great deal about it ourselves.

In the whole area, particularly of biotechnology and genomics, we are, as you have said, bombarded in the media every day with reactions. How do we improve the understanding of the issues by Canadians in order to balance that uninformed reaction?

This speaks to personal health. It also speaks to animal health, and the development and marketing of products. We did spend several very interesting months in the Agriculture Committee of the Senate not too long ago on the entire question of bovine growth hormone that became hugely controversial because the public made it so. They did not understand. As it involved milk, there was a negative reaction rather than understanding.

I should like to know about your communications strategy, because your wonderful work must find its final resting-place in the understanding of the citizens of the country.

Ms Knoppers: We see the ethics office -- I am talking about the interim governing council when I say "we" -- as finally providing Canadians with a central clearinghouse for dissemination and transfer of information, and with the ability to have a hands-on approach to some of the work that already exists in this country or some other countries and international agencies. When people ask questions about what is going on, about what have other countries thought and what is happening in Canada, there would be a place that we could call on for information to help discussions on those issues.

I would also like to pick up on the point about the tri-council policy statement. Lest you think that I believe Canada is behind in ethics, let me say that this tri-council policy statement serves as an ethical, scientific and social filter for research that is activated through the research ethics committees who use it to research protocols.

This is a world first, but not because it is an ethics guideline; there are many of those. It is a world first because it actually takes into consideration all the disciplines that conduct research dealing with the human person. Heretofore, an individual would be sent to one committee for social psychology aspects and another for engineering issues and so on. These guidelines would apply to any research involving humans, be it in the area of music, gymnastics, or biomedical. It is a very unique set.

The focus is on the person. The disciplines must get together and share their common ethical filter. In that sense, we are not in any way deprived here in Canada. On the larger issues, there is a need for a body such as CIHR to pull some of the information together. There is the Canadian Biotechnology Advisory Committee and the Canadian Council on Animal Care. I mentioned in my five-minute presentation that there is the National Council for Ethics in Human Research. All these groups are working together to keep information ongoing and policy-making alive.

The Chairman: We will have to spend some considerable time in our other health care meetings on the ethics question.

I will wrap up with three short questions.

I understood, Mr. Friesen, that in your response to Senator Gill you pointed out some of the unique problems associated with aboriginal Canadians. Ms Halliwell also raised in her presentation some of the unique problems of people living in, I think you used the words "rural and remote areas". Would you please enlarge on that subject? I assume that the nature of the medical problem could occur anywhere. The issue is, how one delivers services in those areas. Is that the aspect to which you were referring?

Ms Halliwell: The subcommittee has been wrestling with issues regarding groups that are, for one reason or another, marginalized in Canada. That marginalization can result in very different implications in terms of health status and health delivery. In rural health, one can look not just at health delivery, but also health status.

Issues of access, of course, are among the most profound. The debates in the subcommittee included the view that this is an area where Canada could become a world leader. We have a special vantage point with our geography, issues of aboriginal peoples, rural health -- tele-medicine would be a good example of how one could actually look at that application -- of multicultural communities and of health status within those.

The Chairman: I have two more questions for Dr. Friesen. First, I am not trying to pin you down on what the actual institutes might be, so this should not be taken as an announcement. However, could you give me three or four illustrative examples of what the title or subject matter of these institutes might be?

Dr. Friesen: First, let me frame the answer more broadly. It was our view at the interim governing council that the issue should resonate with Canadians as being appropriate and reasonable, given their own perceptions about health status and needs. I have always been on record as saying it would be astonishing to Canadians if there was not an institute with a mandate to focus on issues like cancer, heart disease, or some of the important developmental issues that affect health and early childhood development.

Given, particularly, the focus of concern among Canadians about the status of their health care system, we should see an institute that would address these matters in an informed way. Indeed, I would have thought a responsive and flexible CIHR might actually seize the opportunity to be the instrument for Canadians to come forward and challenge the research committee.

It should challenge the best and brightest in this country to determine what new and innovative ideas could be shaped and framed through research to assist Canadians in understanding that their health care system can be strengthened. There are health services, population health issues, and issues related to specific diseases that are of huge concern to Canadians. Those are the kind of issues that should be embedded in and expressed in an institute structure.

The Chairman: I have one last question, where I am playing a bit of a devil's advocate. As a former academic, and having been subject to the peer review process a number of times, the one thing that has always bothered me is the difficulty in getting that process to accept unique and different ideas. The example I always have in mind is that if the research project of the person who first proposed that the world was round rather than flat had been subjected to peer review, it never would have got anywhere. I use that example facetiously, but it has always troubled me that a peer review process kills really unorthodox thinkers. How would you respond to that comment?

Dr. Friesen: It is absolutely true and the history of science is replete with those examples. Many Nobel laureates have begun their lectures with a statement of rejection either by peer review or editorial board.

The Chairman: I raised it because you were laudatory of the process.

Dr. Friesen: It is like democracy. It is imperfect, but it is the best we have.

The Chairman: I will call the next panel of witnesses to the table. We have before the committee Ms Sholzberg-Gray, President and CEO of the Canadian Healthcare Association. Also back with us is Dr. Mary Ellen Jeans, Executive Director of the Canadian Nurses Association. Finally, we have Mr. Charles Pitts, Executive Director of the Coalition for Biomedical and Health Research.

We are celebrating the fact that yesterday the House of Commons passed Bill C-6 with the amendment that this committee proposed and that was developed very much with your help. We very much appreciate that.

Ms Sharon Sholzberg-Gray, President and CEO, Canadian Healthcare Association: Honourable senators, thank you very much for allowing us to appear on Bill C-13. In fact, as you know, there is quite a link between Bill C-6 and Bill C-13. If you had not changed Bill C-6, it is very possible that the work that the CIHR has to do would not be able to be undertaken. Of course, health information is so important in that regard.

In any event, I do not know if I need to repeat what the Canadian Healthcare Association is. I will just briefly say that the CHA is a federation of provincial and territorial hospital and health organizations committed to preserving and strengthening Canada's health system. Through our membership, we represent a broad range of health services and care settings. All of our members benefit from health research, including biomedical research, applied clinical research, health systems research and population health research.

Overall, the CHA is very supportive of the development of the Canadian Institutes of Health Research, as outlined in Bill C-13. This proposed legislation is an important foundation for the needed transformation of health research in Canada. However, while we support the overall thrust of the proposed legislation, CHA has identified several concerns.

These concerns were shared with the House of Commons Standing Committee on Health on December 2, 1999. While some amendments have been made to the bill, those amendments do not address CHA's concerns. Frankly, I am somewhat hesitant to come to a Senate committee bringing amendments again; nonetheless, I think they are important suggestions to make. They are related to the proposed governance and management structure of the CIHR, to the commercialization of health research in Canada, and to the need for transparency and accountability.

First, I will deal with the subject of the proposed governance and management structures. As outlined in the bill, the CIHR president and the chair of the governing council are one and the same person. That flies in the face of many governance and management models that stress transparency and accountability. CHA recommends that the wording of the legislation be changed to state that, either immediately or following the initial five-year term, those two positions shall be filled by different people.

With respect to the term of office for the president, CHA supports the opportunity for the president to be re-appointed after the initial five-year term to allow for continuity and stability, but we suggest that after ten years it would be beneficial to have different leadership. Therefore, CHA recommends that the president be appointed to no more than two consecutive five-year terms.

The appointment criteria for the governing council state that these women and men will reflect a range of relevant backgrounds and disciplines. CHA recommends that these criteria be more specific, that there be some reference to proportional representation of the different fields of health research, which I do not intend to outline here. That will enable the CIHR's decisions and activities to reflect a wide range of needs, issues and perspectives. In addition, CHA recommends the inclusion of consumer or public representation on the governing council and other decision-making and priority-setting bodies of the CIHR.

On the issue of the commercialization of health research in Canada, CHA recognizes the significant opportunities available domestically and globally for both the public and private sectors to benefit from the commercialization of Canadian health research. However, we feel strongly that a cautionary note is needed in paragraph 4(i) to stress that private-public partnerships in research related to the health of individual Canadians, and the structure and management of our health care system, must ultimately be in the public interest and must not compromise the objectivity of the research, the provision of appropriate treatment and care, or the development of needed public policies. CHA recommends that wording be added to the bill to recognize the spirit of this cautionary note.

On the issue of transparency and accountability, CHA is encouraged to see the requirement of a public annual report by the CIHR and a five-year review of the mandate and performance of each health research institute. To strengthen this transparency and accountability, CHA recommends that Bill C-13 include the provision for a parliamentary review of the CIHR every five years. Given what is at stake in terms of innovation, global competitiveness, the health of Canadians, the effectiveness of the health care system and the amounts of money that will be involved, a regular parliamentary review seems necessary and appropriate.

In conclusion, CHA is cautiously optimistic about the establishment of the CIHR. This note of caution is based on a sense that biomedical and clinical research, as important as they are, will continue to overshadow the other crucial areas of health research in Canada: namely, health systems research and population health research. CHA and our members are looking forward to working with others to implement and support the Canadian Institutes of Health Research. Our association, together with others who are working together in a partnership called the Network for the Advancement of Health Services Research, will be using the evaluation framework developed by that network to ensure that CIHR becomes all that it promises to be.

We have left copies of that framework with the clerk of the committee. We thank you for the opportunity to appear today.

Dr. Mary Ellen Jeans, Executive Director, Canadian Nurses Association: I am pleased to be here to represent the views of the Canadian Nurses Association. We are a federation of provincial regulatory and professional bodies in nursing, representing over 110,000 nurses in Canada. We also have some 30 associate and affiliate members representing a variety of specialties in the field of nursing, including a national group of nurse researchers.

I share with many others our support for the concept of an integrated and multi-disciplinary approach to health research in Canada. As a nurse researcher, I recognize the tremendous value that quality research, broadly disseminated and integrated into practice, can bring to improve the health of Canadians. We all recognize, too, the need in Canada to enhance our research capacity. In the context of a competitive global environment, we must have a well-structured, funded and integrated system for health research that will attract and retain our brightest minds.

The proposed Canadian Institutes of Health Research offers an innovative vision to accomplish an effective national health research infrastructure. We believe that the legislation before you provides the broad enabling framework required to put such a vision in place.

We do have several points we wish to emphasize and a few specific recommendations that we feel will strengthen the legislation. First, we must emphasize that the objective of CIHR, as outlined, must be the improved health of Canadians. The CIHR should exist to meet the needs of Canadians first and foremost, not the needs of researchers first and foremost, although those needs are obviously important, too. This will require the CIHR to build and maintain an appropriate balance between biomedical, clinical, health services, and population health or determinants of health research. There must also be balance between addressing immediate needs for evidence or knowledge and research that continues to examine issues on a long-term basis. As you know, to discover a cure for a disease may take many years, but solving some of the immediate problems in our health care system could be accomplished in a much shorter time. That balance is needed.

The historical lack of balance in the support and funding of research has created the most concern about this proposal. For example, while nurses make up 75 per cent of health care professionals, nursing research has traditionally received less than 1 per cent of research funding. While the nursing community was very pleased with the creation of the Nursing Research Fund in the 1999 federal budget, that small fund was designed to address very specific research needs, particularly those related to issues such as nursing human resources. We do not see CIHR as being exempt from funding nursing research, particularly clinically based nursing research, because of the existence of the Nursing Research Fund that was created last year. In fact, the nursing research community looks forward to being active participants in a broader, multi-disciplinary, balanced research agenda for Canada.

While the legislation suggests this balanced approach, we believe that a mechanism is required to ensure that that balance is achieved. In establishing a framework for the CIHR, we also recommend that the peer review process used to select health research respect the full range of different research methods and interests.

We would also like to emphasize and encourage the need for broad public participation in the CIHR. The Canadian public and members of stakeholder groups outside of the research community can make valuable contributions to the creation and design of research agendas. The public must be involved in processes and governance of the CIHR, including participation on the proposed advisory boards.

For this legislation to be truly transformational and to ensure that it continues to reflect the expectations of today's legislators as well as the communities involved, the issue of accountability must be addressed. We believe that the criteria for the selection of the proposed institutes, for their evaluation and monitoring, should be articulated. We would encourage the addition of a parliamentary review process to ensure true accountability to Canadians, as my colleague Ms Sholzberg-Gray has already pointed out.

In conclusion, the nurses of Canada welcome this initiative. The legislation before you marks a truly historic turning point in Canadian health research. The Canadian Institutes for Health Research will have a considerable impact on the quality of life of Canadians. The government will soon be appointing the first governing council of this important body. We believe that the leadership, the president, the governing council of CIHR, must reflect this broader and balanced vision of health research. Nursing leaders have a valuable perspective to bring to the CIHR. Nursing research has made an invaluable contribution to the quality of life of Canadians and nursing researchers are well suited to forge ahead a new era of health research for Canada. We welcome the opportunity to be part of this transformation.

[Translation]

Mr. Charles Pitts, Executive Director, the Coalition for Biomedical and Health Research: Mr. Chairman, thank you in my name and in Dr. Barry McLennan's name. He was not able to be here today, but I want to thank you for inviting our Coalition to appear before your committee.

[English]

Our coalition is a non-profit corporation that represents Canada's 16 medical schools, four schools of veterinary medicine, clinical researchers, academic physicians through the Association of Canadian Medical Colleges, the Confederation of Canadian Faculties of Agriculture and Veterinary Medicine, medical specialists, family physicians, the Health Research Foundation of Canada's research-based pharmaceutical companies, and the voluntary sector through the ex officio presence of Canadians for Health Research. On their behalf, thank you for the invitation to be here today. Again, Dr. Barry McLennan sends his regrets.

With the creation of the Canadian Institutes of Health Research, Canada will embark upon an exciting journey. In fact, the creation of CIHR is, in our view, a key element of the federal government's strategy to ensure that Canada comes to and remains at the leading edge of the knowledge-based economy.

In our view, CIHR clearly is supported enthusiastically by a wide coalition of partners in the Canadian health research community. People want this legislation passed quickly in order for CIHR to begin operations as early as possible. Reflecting the broad appeal of the CIHR concept, The Globe and Mail's public health reporter, André Picard, entitled his March 22 article on the passage of the Medical Research Council of Canada to CIHR, "No tears at the wake for the research council." That article came after discussion with a broad number of researchers in the Canadian community. I can tell you from our contact with both social researchers and biomedical researchers across the country, there is a great deal of enthusiasm and perhaps a new harmony and a new coming together.

I bring only one recommendation that I will give later to this committee. Dr. Barry McLennan was very active as a member of both the task force and the interim governing council in preparation for CIHR. He was able to express to those two groups the views of the biomedical community. As the Coalition for Biomedical and Health Research, we would like to express our sincere thanks to the CIHR interim governing council for having transformed the vision of Canada's new health research community into what we believe will be a very effective structure.

CBHR is convinced that the legislation creating CIHR will lead Canada to the dawn of the most exciting era of health research in our history, a history that has seen a number of important medical discoveries here in Canada and that will, no doubt, open us to a whole new inventory of great breakthroughs. Without a doubt, Canada is about to create a completely new approach to health research that will contribute to international recognition of its leadership in research innovation. This new approach will require significant increases in public investment in health research. It should also encourage greater volunteer, private-sector and public-sector investments from across Canada.

In our view, CIHR will enable researchers to work more effectively in partnership with the private sector. In addition, these partnerships will be organized under CIHR to ensure that the public interest is protected, that the health of Canadians is strengthened and that the health care system is advanced in this country. As an additional benefit, CBHR is convinced that CIHR will provide intellectual pooling and synergies across various research sectors, thus avoiding intellectual and fiscal silo effects, a problem that we commonly see in many institutions in the health area and in education as well.

The proposed institutes will create opportunities for young researchers to come into health research through training, mentorship and networking and will also support existing researchers to sustain their careers. The institutes will help to ensure that Canada reverses the brain drain by retaining the skilled researchers that this country has developed. At least partly as a result of this initiative, we are already seeing encouraging signs that Canadian researchers are returning and that researchers in other countries are seeing Canada as a country of opportunity in innovation.

CIHR will constitute a win-win situation for all Canadians: for the established research community; for research funders, private, public and volunteer; for both human and animal health here and around the world, as our technology and our intellectual properties are shared with the world; for Canadian taxpayers in the short, medium and long terms; and for our young people whose thirst for knowledge and experience will be met with opportunity and new resources.

CBHR's one recommendation then is that this committee promote speedy passage of this bill to your distinguished colleagues of the Senate.

Senator LeBreton: We have had so many meetings with these witnesses. I want to thank you again, Dr. Jeans, Ms Sholzberg-Gray and Mr. Pitts. Your precise, clear representations in the past were a part of our success with Bill C-6.

Regarding the governing council and the issue of proportional representation, I question the make-up of the council. I inquired of earlier witnesses whether they had taken into account provincial agencies or community agencies. Having heard from you, it seems that the area of health research knows no borders. Perhaps the criteria should not be based provincially but, rather, as you suggest, on proportional representation from all the different fields of health research. In your consultations with Health Canada and other groups, have you advanced this recommendation? What has been the response about going more to the experts in the field, rather than worrying about whether we have covered the country geographically?

Ms Jeans: We did present this to the health committee in the House of Commons. We also belong to the Network for the Advancement of Health Services Research. In fact, the interim governing council of CIHR and the CIHR secretariat did solicit input from all stakeholders. By stakeholders, I refer to the broad disciplines involved in health research. They solicited recommendations of names for the governing council. I believe that was an attempt to respect our continuing concern that this balance be achieved. Those names have not been yet announced. It remains to be seen if the council will be balanced. At least we were asked for input.

Ms Sholzberg-Gray: In a letter to Mr. Alan Rock, dated November 4 and sent by the chair of our health research network, which is interested in a broad view of health research including biomedical, clinical, health systems area and population health, we asked that certain principles be observed. We also indicated that we would in the future use the evaluation framework that we were sending. We made, I think, a good case for a governance structure that includes representation from those four broad fields to create the ability to look at things in new ways because people outside the box will be there. We talked about issues of peer review and bringing together in the process people not from just one of those four parts but having all the parts together. We have made the point and it is likely that that is how things will happen in the future.

We recommended that it would be useful to include that direction in the legislation and so make it necessary. Obviously, many other issues must be taken into consideration in naming members of the governing council and advisory committees. We are a country with a large geography, which we cannot ignore. We must ensure that different population groups are part of the process as well. Nonetheless, we should be thinking of these four broad categories at the same time. How we bring all that together will be a challenge, but it can be done.

Senator LeBreton: I support your recommendation that the position should be split after five years, and it is valid to want new blood after ten years.

The bill recommends three-year terms for members of the governing council. Is that a reasonable term for people in the health research area? Sometimes on agencies and boards like this, three years is hardly enough time to work on something as complicated and intricate as health research. As the bill was being drafted, did you have any knowledge about staggering the appointments so that the whole council is not subject to reappointment exactly three years later with a whole new council of appointees coming in? An argument could be made for staggering the appointments, not having them all come due at the same time. In fact, is three years long enough for a term?

Ms Jeans: To my knowledge, although I do not have the reference to the text here, most of the councils do stagger the term. MRC and SSHRC operated in that way, as well.

Is a three-year term long enough? Active researchers are so reluctant to sit on administrative bodies because it takes away from the time they can devote to their intellectual pursuits. At the same time, you want some of those very active researchers on these councils because they live the policies and decisions that are made by the councils. There is a tension around how to get those folks involved without setting too many obstacles that would interfere with their day jobs. It has worked in the past for the MRC council, the SSHRC council, the NSERC council, and so on. I think that CIHR will also have advisory bodies and a different structure that will support continuity. Therefore, I would say that a three-year term is probably adequate.

Some of the questions you are asking are part of the reason we believe that a five-year review is so important. If we do not get it right, let us at least have an opportunity to come back and fix it.

Senator LeBreton: Just for the record, Senator Cook notes that they are staggering the terms. It is in the bill.

Ms Sholzberg-Gray: I was just going to add that the three-year staggering is in the bill. There could be two consecutive terms but we do not know whether people would want two consecutive terms.

You did mention that you supported our proposal to separate the chair of the governing council from the presidency. We were looking at various models like the Canadian Institute for Health Information where the CEO is a different person than the board chair. A number of government bodies have that structure so that the president reports to a chair and a council rather than reporting to a chair who is himself or herself plus the council. That is why we promoted it. We thought it created more accountability and transparency.

We were also concerned about members overstaying, so to speak. We thought ten years was a long time to stay in one position.

Senator LeBreton: She says to a group of senators!

Ms Sholzberg-Gray: I think for a legislator, wisdom and experience are very important. However, it seems to me that if you are a CEO of a particularly innovative research group, ten years is a long time.

Senator Carstairs: Are you suggesting we are not innovative?

Ms Sholzberg-Gray: I better not say any more.

Senator LeBreton: We appreciate the distinctiveness of your group as opposed to ours. Did you have something you wanted to add to that, Mr. Pitts?

Mr. Pitts: Attempts are being made right now to have certain people of the former board of MRC carry over. There would be staggering, and I think that is an important feature to maintain.

Senator Fairbairn: I will preface my questions with an apology because after my questions I will have to run, not because of lack of interest but because I have a sick spouse at home. I wish I could take Dr. Jeans with me to give me a hand.

Both Dr. Jeans and Ms Sholzberg-Gray raised the question of accountability. I do agree with you that, exciting as it is, it is also incredibly important not just to the field of research and to health care, but for individuals. In order that this truly be the success that everyone wishes it to be, I would hope that at the very least we could get a strong public commitment to a parliamentary review. That parliamentary review should involve not just the House of Commons but also the Senate, because we have done this on numerous other occasions. At the very least, I would hope that we could get a strong public commitment on that.

Commercialization came up earlier. In this complex area, this is being raised publicly in the media on a variety of issues. Being in the media, most of the issues would be controversial. I wonder, Ms Sholzberg-Gray, if you could take the opportunity, while you are on the record of this committee hearing, to be more specific in your concerns, even anecdotal if you wish. One should determine how close this new body would want to get into that very difficult area of public interest versus commercialization and perception.

Ms Sholzberg-Gray: First, I want to direct your attention to paragraph 4(i), which talks about the role of CIHR. The only thing it says about commercialization is facilitating the commercialization of health research in Canada. There is neither limitation nor concern as to whether or not it serves the public interest. There is no description as to what that might mean.

I would assume that facilitating the commercialization of health research in Canada would not be a goal in and of itself but that other goals would be attached to it. We know it is important to bring innovations and what not to market and to have all those kinds of transformations. However, when you start to look into the whole issue of at whose cost, you must consider whether it is more important to commercialize or to serve the health needs of Canadians. There should be a defining clause saying something like "provided that at all times the health needs of Canadians will be served first."

Perhaps there should also be some note to the effect that objectivity is really important in research. We have seen a well-publicized case about the commercialization or the commercial support of a research project and whether that can compromise the conclusions of the project.

Senator Fairbairn: Are you referring to the University of Toronto?

Ms Sholzberg-Gray: Yes, that particular case.

There are other issues, too, as to what is more important. There is the issue of the profit motive in terms of bringing something to market in opposition to the need to serve Canadians. Who benefits? I know the universities are involved in those kinds of agreements on a daily basis. They are very positive most times, both from the point of view of commerce and business and from the point of view of bringing things to the population at large to serve the interests of Canadians. We have to understand that in Canada our health system and health research is being funded through the CIHR with huge government investments. That research ultimately has to be in the public interest and not to serve the particular private interests of any one corporation.

We think it is positive to be involved in commercialization and business, both domestically and overseas for an export market. On the other hand, we must understand that our purpose is to serve the Canadian public.

We do not have particular wording that we want to advise. We just wondered if perhaps someone who excelled in drafting, because we did not seek legal advice on that, could write some descriptive clause, not just "facilitating commercialization." Some further definition should explain that there will be facilitation of commercialization knowing at the outset that, in accordance with the goals of the establishment of the CIHR, the ultimate goal is to improve the health of Canadians. Perhaps there could be a note that the commercial effects are side effects.

Ms Jeans: Again, there needs to be a balance and some criteria. On the one hand, you do not want the tail wagging the dog. In other words, you do not want industry determining the research agenda of a publicly funded Canadian Institutes of Health Research. On the other hand, we must not be ignorant of the economic possibilities. I will give you a real-life example.

In 1975, I was a graduate student of Dr. Ronald Melzak at McGill University. I tested the very first rendition, if you like, of what is now called TENS, transcutaneous electrical nerve stimulation, for the relief of chronic pain. There was no one around then to give me any advice about the potential of that little machine. Today someone is making millions of dollars on that machine, and it is not I and it is not Dr. Melzak and it is not McGill University.

You need a balance. We have invented many things in Canada that we have not taken to the commercial markets for the benefit of the Canadian economy. At the same time, I agree with Ms Sholzberg-Gray that the public interest must be first and that we need criteria to guide the commercialization and the involvement of the for-profit industries in supporting research. Perhaps that kind of wording should be part of the proposed legislation, or there should be direction to the Canadian institutes that they establish principles and criteria that address those values.

Senator Carstairs: I must take exception to this whole debate because you are not reading it properly. You cannot read paragraph 4(i) without reading clause 4. Clause 4 says very clearly:

...its translation into improved health for Canadians...

Everything else follows. I do not understand where the argument is here. It seems to me like terrible nitpicking and I am getting annoyed and frustrated. What is the problem? Clause 4 states:

The objective of the CIHR is to excel, according to internationally accepted standards of scientific excellence, in the creation of new knowledge and its translation into improved health for Canadians, more effective health services and products and a strengthened Canadian health care system...

Ms Sholzberg-Gray: In my answer I did say that the opening paragraph might very well be read to cover that. On the other hand, in paragraph 4(i) "facilitating commercialization" is all by itself. By the way, the opening paragraph does not necessarily exclude the notion of for-profit. You can improve the health of Canadians also in a for-profit way. The question was ownership and the correct balance. One can read it in, which is what I said in my response.

Senator Carstairs: I think it is not only read in, you cannot read 4(i) without reading what paragraph (i) comes under; so it is there.

The other issue that causes me concern is that it is now becoming very trendy to suggest five-year reviews. Every bill has a five-year review and it will be five-year reviewed in the House of Commons and it will be five-year reviewed in the Senate of Canada. I can anticipate a day when the House of Commons and the Senate do nothing but review because we are building all of these reviews automatically into the legislation.

This body will table a report every single year. If there are problems with those reports, I do not want to wait four years to have them come before me; I want them to come before me right there and then. I am very concerned that, if we build in more of these five-year reviews, everyone will say, "Oh well, wait, it will come up for a five-year review," and I will say, "No, I do not want to wait. I want to review it now." I should like your comments on that.

Ms Jeans: I do not know if I have an answer, but I have a question. By what mechanism could you do that?

Senator Carstairs: They must table an annual report in the House of Commons.

Ms Jeans: MRC has tabled reports for years.

Senator Carstairs: MRC has been called to this committee to explain its annual report. Dr. Friesen and I, who know each other from Manitoba anyway, have really become quite chummy. We keep running into each other at committees while we discuss the operation of the Medical Research Council.

I must say, in principle, that I find this a trendy thing that is really causing me concern about what the future role of parliamentarians will be.

Ms Sholzberg-Gray: From time to time, whether it is built into the legislation or not, the Senate, not the House of Commons, reviews major issues of importance, such as the current review of the medicare system. Perhaps it might be useful at some future date to look at the state of health research in Canada in that broad sense, rather than this constant review.

The Chairman: I find myself on that score completely in agreement with Senator Carstairs. I am also completely in agreement with Senator LeBreton on the first point about separating the chair and the president, although not necessarily for the same reasons. Much work has been done on the governance of all kinds of organizations, be they private-sector corporations or in the voluntary sector or whatever, and just generally good governance principles require that they be separated. I have no problem with your suggestion that rather than amend the bill now and get it stuck back into the mess in the other place, one could easily have a recommendation or observation or whatever you call it that suggests that, following the completion of the first five-year term, that be changed.

I have enormous difficulty with your proportional representation paragraph and the one that talks about consumer and public representation -- and maybe this reflects the many years I had trying to put together national organizations and national bodies of various kinds -- because the more you hamstring by setting in place a bunch of rules, the harder it is to get a really good body. You can put together 15 Canadians who meet all the required tests and you may end up with an extremely ineffective group of people. It seems to me that above all else, when you are looking for excellence, you are looking for excellence that is not required to be constrained by proportional representation from four particular health groups who regard themselves as "in", and then throwing in the odd consumer and throwing in the odd Western Canadian and Atlantic Canadian and so on. I would strongly oppose any constraining of the actual makeup of the council beyond the notion that you want really good people. I would have thought that that was in your interest, too.

Ms Sholzberg-Gray: I know Ms Jeans would like to respond to your point. The new Canadian Institutes for Health Research is a successor, so to speak, to the MRC, and it is quite possible that current members of the MRC might be appointed to the first board. The point we were trying to make is that, because the primary purpose of the MRC was biomedical and clinical research, there has been a great deal of anxiety on the part of many people who fear that in the CIHR health systems research and population health research will not be as valued as biomedical and clinical research. That is why those people have come together in a coalition, and that is why that recommendation was put forward. Whether it needs to be in the legislation or not is another issue. There is a feeling that all parts of the objectives might not be appropriately represented on that governing council.

The Chairman: I understand that concern. However, in my view it would be a disaster to go the other way and legislate a requirement of a particular mathematical formula to make it work. What you are really saying is that you wish to ensure that the council is truly representative and not loaded in favour of one segment or another of the health research population. That I understand. It does seem to me, however, that to try to legislate it rigorously would probably create a much bigger problem.

Ms Jeans, did you wish to comment on that? I really made the statement as an observation, not a question, but I am happy if you wish to comment on it.

Ms Jeans: Historically, a number of groups have been excluded from funding for their research. Our anxiety is to ensure that the broad vision that is described here actually comes about. Some of these recommendations are made out of that anxiety, and it is part of the reason we recommended a five-year review.

The Chairman: Let me pick up on Senator Carstairs' point. The fact is that an annual report will come before Parliament, and at least two of you at the table seem to be get very good at getting access to committees when you need it. I would think that if you were very unhappy with a report, some of us would certainly hear about that and then we would provide you with a forum.

Frankly, that ad hoc mechanism, which allows a much more instantaneous and flexible response, works better. The only reason that in certain cases a five-year review, or a sunset clause in the case of banking legislation, has been put in place is precisely to force the government to deal with issues that it would otherwise rather duck.

In this case, you are proposing a review. I think you are better off with an ad hoc system. If you get bad representation in the first wave, we will hear about it. Since people will have terms expiring in years two and three, that will be a way of dealing with that quickly as opposed to waiting for five years. I urge you to let us know if you are unhappy with the initial allocation and we will attempt to see if we can do anything about it for the second and third year.

I thank the three of you for coming. It is good to see you again.

Senators, our next witnesses are Mr. Upshall, Dr. Reading and Ms DuBick.

Mr. Phil Upshall, Chairman Elect, Canadian Alliance on Mental Illness and Mental Health: Honourable senators, this is indeed an historic first for our movement. I am pleased and honoured to be able to present myself as a consumer-survivor of the mental health process.

The Canadian Alliance on Mental Illness and Mental Health is a new movement on the block that quite adequately meets the chair's indicator as to what a good national group is. We are a consensus group. We do not operate with bylaws or constitutions. We operate only as we unanimously agree.

I am also a member of the Mood Disorders Association of Ontario, where I am the government relations officer and fundraiser. I also had the honour to be on the peer-review mirror committee of the NVHOs, the national voluntary health organizations.

I have filed with the clerk of the committee copies of some of the work that the Canadian Alliance on Mental Illness and Mental Health has been doing. I should just like to point it out to you briefly so that you know that we have it. The first thing we have is "A Call for Action: Building Consensus for a National Action Plan on Mental Illness and Mental Health." This was just presented to the Federal/Provincial/Territorial Advisory Network on Mental Health in Vancouver on Monday. As a result, some of our members remain there for the best practices conference. This is quite a sophisticated draft of how we go about building a consensus as to how mental health activity should be dealt with in the future.

I have also filed with the clerk a copy of our agreement with the Laboratory Centre for Disease Control dealing with setting up a surveillance system. That is a discussion paper that was released on December 29, 1999. As honourable senators will know, the Laboratory Centre for Disease Control is part of Health Canada. We were quite excited to be working with them on that project.

All honourable senators have a backgrounder on the Canadian Alliance on Mental Illness and Mental Health. I am advised to keep saying Canadian Alliance on Mental Illness and Mental Health so that there is no concern as to relationships. The Canadian Alliance on Mental Illness and Mental Health is made up of the Canadian Mental Health Association, the Canadian Psychiatric Association, the Schizophrenia Society of Canada, the Mood Disorders Association of Canada, and the National Network for Mental Health.

Those last three groups, the Schizophrenia Society of Canada, the Mood Disorders Association of Canada and the National Network for Mental Health, are what we call consumer survivor groups or family groups. They are the dominant groups within the CAMIMH. Therefore, our perspective is that our alliance can totally reflect the needs of those in the communities, those with the mental health problems, mental illness and disorders or their families, who are quite desperate for assistance.

We got together a year and a half ago to try to find a way within ourselves to get our voices heard on the broad national stage. Many of us had worked alone in an effort to get our singular issues placed before the various parties in Ottawa and, quite frankly, we were very unhappy with the results.

Mental illness, as honourable senators will know and as I will point out in a minute, is one of our most significant issues. In the past, it has been the biggest dollar cost in our hospital services, at over 15 per cent. At least 2 million Canadians will be affected directly or as family members by depression, schizophrenia and various other disorders.

We are talking about research today. While 15 per cent of health costs are related to mental illness and mental health, less than 5 per cent of research funds go into it. We have no major national foundation to date.

All of this has brought to our attention that it is necessary to have a national presence on the national stage and to become involved in processes like ours in order hopefully to address the single most important issue, which is the stigma of mental illness and mental health. If we can get CIHR to set up an institute of mental health for research purposes it will do two things. It will get research moving on a national scale, where it is not now, and it will also help us to address the issue of stigma.

Nobody wants to talk about mental illness. Nobody wants to talk about issues that are important to us. Our community is completely sidelined on many occasions when health issues are discussed. We have a wide breadth and depth of expertise at our disposal and we are anxious to make it available to the national health movement.

I believe all honourable senators have our document titled "Canadian Institute of Mental Illness and Mental Health Research: A Working Model." I would ask senators to have a look at the report in some depth, because it provides a great overview in the cover letter and the transmittal letter. Those are the first two items. All the members of our Canadian Alliance on Mental Illness and Mental Health signed the cover letter, as can you see. It sets out in succinct detail why we believe the Canadian Institute of Mental Illness and Mental Health Research is important.

The proposed model supports a wide-based and integrated innovative research approach to mental disorders. It ranges from the molecule to the brain and all the way to policy and social-cultural issues. The integrated diversity of this institute is demonstrated in its four themes: basic biomedical; applied clinical; health services systems; and social, cultural and health of populations.

I draw your attention as politicians now to other items because of your concern about who is involved in some processes. On page 1 at tab 3 there is evidence of the size and strength of the National Working Group for a Canadian Institute of Mental Illness and Mental Health Research that set about preparing this model at Dr. Friesen's invitation over a year ago. The membership is a microcosm of what our community has to offer to the health research community, and, as you can see, this is one of the few models that has actively involved consumers, survivors, patients and caregivers in the development of the model. We are truly the only democratic model that has been presented -- the one that has involved the grassroots in their entirety as well as some of the brightest psychiatric, neuroscientific and psychiatric-epidemiological researchers and more. It is important for us to tell you about the breadth.

The justification, the burden of illness that Canada has, is set out in the model on pages 3 and 4 at tab 3. The burden of health in Canada, not only in health care costs but also in corrections costs and quality of life factors, is absolutely astonishing. While I cannot quantify it in any reasonable way, I can tell you that it is ten times greater than any particular health care cost you can put your finger on. It is truly beyond measure and something we need to address in great detail.

At tab 5, I would urge you to look at the letters of support that have gone into the interim governing council in support of our modelling effort. We actively sought the involvement of the broader community before we presented our proposal and we are very pleased with the response that we have received to date. To be fair, we have a number of other endorsements, which we will be filing in due course.

Senator LeBreton asked Dr. Friesen about other countries and their institutes. Dr. Friesen responded that the United States has the National Institutes of Health. They also have the National Institute of Mental Health that was set up many years ago for the primary purpose of allowing the consumer survivors and the community involved with mental health the knowledge that government is taking their issues seriously in approaching the stigma. Thank you for the opportunity to be here.

Ms Linda DuBick, Director, Prairie Women's Health Centre of Excellence: Honourable senators, I am pleased to speak to members of the committee on Bill C-13. We welcome and support the concept behind the CIHR as we generally endorse Bill C-13. In particular, we are very supportive of the identification of the four CIHR research quadrants, the transformative intent of the CIHR and the interdisciplinary approaches to be taken by the CIHR. However, we are concerned that the general direction the CIHR seems to be taking and the content of the proposed legislation do not go far enough in confirming the Government of Canada's commitment to women's health research in general and to the kinds of research activities undertaken by the Centres of Excellence for Women's Health Program in particular.

It bears some repeating that both the Liberal Party and the Liberal government have made strong commitments to women's health research and to the Centres of Excellence. For example, the centres fulfilled a Red Book commitment. Most recently, they were cited by the Minister of Health as an important pillar of Health Canada's Women's Health Strategy, which was released earlier this year. We hope that members of this committee will understand and appreciate that the Centres of Excellence, as a concept and as a commitment, pre-date both the Women's Health Strategy and the CIHR. I do not think it is an exaggeration to say that the Centres Of Excellence have stood as a centrepiece of the government's commitment to women's health research and are an important milestone in the evolution of health research in this country.

The centres were created in 1996. There are now five centres and they are located in British Columbia, Ontario, which serves as a national centre, Quebec, the Maritimes and my own centre in the Prairies, which operates in both Manitoba and Saskatchewan. We are committed to women's health research that is women-centred, participatory, action-driven and policy-relevant all around women's health issues.

We bring together community-based and academic researchers and we develop working partnerships between women's groups, researchers, policy-makers, service providers and individuals. We conduct our research in many ways. One of those ways is by awarding research grants. To give you a flavour of what we are about and what we do, here are a few of the topics that our centre funded recently: the health of Salvadoran women in Manitoba; women survivors of childhood sexual abuse; gender analysis and determinants of health within the Manitoba First Nations model, in partnership with the Assembly of First Nations; the effect of social isolation and loneliness on the health of older women; the effects of caregiving on the health of informal caregivers in rural Saskatchewan; and what women want when it comes to midwifery care.

We also commission research. One of our most recent commissioned works, called "Invisible Women," showed that, despite strong commitments from the governments of Saskatchewan and Manitoba, virtually nothing had been done to ensure that gender had been considered in health needs assessments or health plans conducted by regional health authorities. When we presented the report to the two governments, the centre was asked to work with them to improve the situation.

More timely, perhaps, we are a partner in a national project to examine the impacts of health care privatization on women. Even though Alberta does not fall within the mandate of our centre, we have worked very hard to draw in researchers from Alberta to participate in this project.

We were also asked by Manitoba Health to manage a research project on services to pregnant addicted women. This is an issue that arose from the well-known G case, which received national attention and resulted in a Supreme Court decision. These examples attest to the fact that the centres are meeting the expectations of the program and are doing important work.

I believe that it is important to emphasize that our projects are community-based research. That means that the community affected by the health issue has a say in how the research is planned, conducted and used, and has a say in the peer review.

The Centres Of Excellence program has its own special feature: all of our research is required to have policy relevance, whether it is at the local, regional, provincial or federal level. It is also required that research projects be undertaken by qualified researchers, using accepted research techniques and methodology, including peer review, and policy-makers are also expected to be part of our research teams.

How does all this relate to Bill C-13? The Centres of Excellence were each given $2 million to use over six years. None of the centres has been given explicit assurance that it will receive continued funding from Health Canada beyond March 31, 2002. We have only 24 months left in our funded mandate and it is now that we are starting to see significant results for those dollars.

What does the CIHR intend to do about women's health research? When we review the main documents available through the Web site, we see only one reference to women's health. We found strong commitments to biomedical and applied clinical research. We did not find a clear and unequivocal commitment to research that links women's health and health systems and services, nor a commitment to research that links women's health and research on social, cultural and population health matters.

We found some broad commitments to various partnerships, especially those with commercial interests. We did not find a prerequisite commitment to the protection of the public interest when undertaking commercialized health research. In women's health, these issues are of vital importance.

We fear there is a medical and academic bias in the CIHR documentation to date. We are left with the distinct impression that once all the legislative and organizational plans are put into place, community research may not stand much of a chance in the scramble to form institutes. If the CIHR becomes the one and only source of federal funding for health research, we fear women's health issues may take a back seat. Equally important, those who support women's health issues will have lost the high profile commitment of the federal government. Women's health will become a part of the CIHR agenda rather than a priority of the Government of Canada.

We do not suggest opposing the CIHR. We acknowledge that it has the potential to make an important contribution to health research in this country and around the world. What we are concerned about is that the initiative could result in losing the significant gains achieved through the Centres Of Excellence program in terms of the recognition, the high profile and the direct commitment of the federal government to women's health research.

We have pointed out to the interim governing council that, through its international and domestic platforms, Canada with its machinery is obligated to work towards improving women's health. We stated that the CIHR, being part of that government machinery, is also bound by federal policy to integrate gender into science and into its management. It must also integrate women's health issues into its research program. Furthermore, an institute for women's health research was proposed to the CIHR in January of this year by the working group on CIHR gender and women's health research. The establishment of such an institute would be tangible evidence of the government's commitment to women's health research.

I believe the clerk has provided honourable senators with copies of our presentation to the House of Commons Standing Committee on Health. It includes a number of recommendations, and they appear on the last page of the draft. In the interests of time and wishing not to irritate Senator Carstairs again with respect to paragraph 4(i), I will not go over them. However, I should like to ensure that my colleague has a chance to speak.

Dr. Jeff Reading, Health Research Advisor, Assembly of First Nations: Honourable senators, thank you for the opportunity to come to Ottawa in the springtime. I am a Mohawk from Southern Ontario. My mother is from St. John's, Newfoundland. I work at the University of Manitoba. I spend a significant amount of time in Ottawa and I live in Victoria. I think I have the country covered.

The Assembly of First Nations is grateful for the opportunity to speak to you today about research in aboriginal communities. We recognize that the CIHR is a process that is an historic opportunity to re-direct research in this country and to focus on improving the health of Canadians.

It is well documented that First Nations and other aboriginal groups around the country are most at risk for poor health status. There is something in the neighbourhood of an 8- to 15-year gap in life expectancy for aboriginal people. Life expectancy is a very crude measure of total wellness. One can envision that morbidity is much worse in a number of key indicators: diabetes, adolescent suicide and a number of other factors.

Put onto this the demographic age structure where the population is young and growing. Something in the neighbourhood of 50 per cent of our population is under the age of 30. In the total Canadian society, only about a third of the population is under the age of 30. There is a baby boom happening within a targeted population where the health status is particularly poor.

We undertook a research study recently where we interviewed some 10,000 First Nations people in their home communities. We also interviewed Labrador Inuit. We came up with the usual findings that described poor health status, but the study was managed by political organizations across the country. It was the first time that aboriginal groups undertook a national level study and came out with results. It was very invigorating for the people involved. Previous to the study we went across the country and asked people if they would participate in the study. We received a significant amount of resistance to health research when we spoke to people.

People in communities and health care administrators said that they had been studied to death. They feel the research process has exploited them; it has not served our communities the way it should. We were told, "People come here, they measure us, they calculate, they produce reports and then they leave the community and we never know what it was that they did." The question we heard repeatedly was "How will it improve our health?"

Those people said that they would only participate in health research if they had some say over how it would be conducted, who would own the results, how those results would be shared, by whom and for what purpose. We are in this backdraft of negative opinions about research and yet there is an emerging and positive light at the end of the tunnel. We think it is incredibly important that we become involved in health research agendas at the national level.

As we know, First Nations in particular have a special relationship with the federal Crown that predates Confederation. Health services are delivered to some 600 First Nations across the country at a cost exceeding $1 billion. Given the demographics and the health status in the communities, those costs will only become worse unless we can get a handle on how to improve the outcomes. In other words, how can we improve health? Research is a natural starting point.

We participated in various calls to have our issues integrated into the CIHR. SSHRC issued a request for proposals on the MRC and I participated with my colleagues as principal investigators to respond to that. We made presentations and wrote reports detailing aboriginal interests in the CIHR. We think that aboriginal issues in the CIHR can highlight to Canadians as a whole the transformative and innovative aspects of what the CIHR is trying to do. If we want to transform the negative impact and reputation of research in native communities, we must extend to the native communities a meaningful role in the research process.

In terms of innovation, there are many areas that we have not been able to look at from a research point of view. We are very good at describing negative consequences of health status on native communities. People regard that as a characterization of native people in general as being in a constant state of chaos. When one characterizes communities that way, it is not too far to extend the discussion to say, "Well, if the people in a community are in a state of chaos, how can they manage their own affairs?" In other words, research, in a subtle way, reinforces unequal power relationships. It does not really reinforce the concept of First Nations governing their own affairs and becoming self-determining.

Those are some of our concerns. We are willing to participate in the CIHR. We have tried to have our issues brought forward and we appreciate the opportunity to speak today.

Finally, I should like to speak about international recognition. Canada has been a leader in indigenous health across the world. We hosted the first international congress on circumpolar health, and that happened in Yellowknife in the 1970s. The next meeting will be held this summer in Norway, north of the Arctic Circle, where we have a large delegation who will be participating.

Researchers in Canada have made an impact on diabetes in indigenous people, and that work has been disseminated across the world in New Zealand, Australia, the United States and South Africa. We have informed the world in terms of indigenous health. I recently came from a meeting in South America and I have other meetings planned in Australia looking at some of the things we have done in primary care.

The issue is not really capacity. We have established a capacity of health researchers and we have made that explicit in our proposal. The issue is one of succession planning. Where is the new generation of health researchers that will focus on aboriginal health? Where will they come from? In the past, the National Health Research Development Program, the Social Sciences and Humanities Research Council, and the Medical Research Council of Canada all allocated significant amounts of resources toward aboriginal health, but it was often fragmented. We see this as an opportunity to consolidate health research dollars in aboriginal health and to build upon our international reputation.

If asked whether they have ever been involved in health research, many of the researchers you will talk to will tell you a story about when they went up to a community or when they did this and that. That was usually in the early part of their careers and it often helps to build their resumés. Then they move on to other things. We are talking about moving beyond that descriptive research and getting into solution-based research. First Nations and aboriginal people have interests across the spectrum, across the four dimensions of health research that are characterized by the CIHR.

The Chairman: I am astonished by your 8- to-15-year life expectancy data. Have there been any comparable studies on how the health status of aboriginal Canadians compares with the health status of aboriginal groups in other developed countries? I am thinking, for example, of the United States, New Zealand, Australia, et cetera. In other words, is this a worldwide problem or is the Canadian situation significantly worse or significantly better than the comparable situation of aboriginal groups in other developed countries? I would exclude South Africa, for example, in order to get a legitimate comparison.

Mr. Reading: The situation of aboriginal groups in Canada is obviously better than that of indigenous people in Third World countries.

The Chairman: That is why I was trying to take industrialized countries by way of comparison.

Mr. Reading: Certainly the situation has improved in Canada but it is not really fair to characterize the native community in Canada as a homogeneous group. One of the lines of research that we are particularly interested in is what makes some aboriginal communities healthy and others not. That comes from Bob Evans' book of the same title, Why Are Some People Healthy and Others Not: The Determinants of Health of Populations.

We know very little about what makes some communities healthier than others, but we need to look at some of the community aspects that make them healthy across the spectrum. There is no doubt that, when you aggregate the results together and come up with very depressing statistics, it does become a self-reinforcing prophesy. People say, "Well, of course I cannot achieve a health status that is comparable to other Canadians," because we are constantly bombarded with the media and the research reports that say that we should have these various problems.

We have led the way. Canada has a good tradition in going into the North and reaching out to remote communities. My own father-in-law was a doctor who came from Africa and worked on the Bay Line in Northern Manitoba. There has been a transformation in those communities up on Hudson's Bay over the 30-year period, with an incredible drop in infant mortality in the North over those 30 years.

We have made some gains but we are now at the nadir of the sort of infectious and communicable diseases. We are starting to see a real increase in chronic diseases. Type 2 diabetes is at epidemic proportions. It is what I call the "modern plague" in native communities. One out of three people living on reserves over age 50 are affected by diabetes. Diabetes causes blindness, renal failure and non-traumatic amputation of limbs. It is also a major risk factor for cardiovascular disease, as I am sure Senator Keon would attest to.

This new wave of chronic conditions that are starting to affect native people really causes much concern, not only for the suffering it will cause but also for the associated economic costs. When you have to fly someone out of a remote community in the middle of a snowstorm to get some sort of acute care at a tertiary care centre to life-saving care, it will be very costly.

When the CIHR is created and starts to develop complex and elegant research questions, we want to sit at the table with the other institute directors and have our issues integrated across their work. It is not appropriate or feasible for First Nations to try to create or recreate everything the CIHR does, but we want to have meaningful integration in all the activities that take place.

Finally, we are starting to move on to the area of molecular and genetic biology, which is a new frontier in medical research. Again, we need to be there with the other people who are involved in that complex area so that we can provide an entry point for their research to our communities and for our processes back to their work. We see it as being a win-win situation and a value-added component to have meaningful integration of aboriginal health.

Senator Carstairs: I wish to be clear in my own mind because I spoke on the bill yesterday in the chamber and I raised aboriginal health issues, in particular the issue of diabetes. Do you see the integration happening not as a separate institute for aboriginal health, but as a component of every single health institute that is established?

Mr. Reading: What we put forward is an aboriginal seat on the governing council and a separate institute for aboriginal health. We really feel that we need to build on our international reputation. Canada can take pride in the fact that we have improved the health status globally of indigenous people. I think, by designating it as an institute within the CIHR, it sends a strong message to other countries that they can come and form linkages with us and we can start to share information in the global sphere. That is a very important role that we can play internationally.

Senator Carstairs: I have no particular problem with having a separate institute. Do you have a concern that by having a separate institute your issues might be sidelined into that institute so that you would be told by another institute, for example, "Well, you have your own institute so we do not need to study your particular concerns within our institute"?

Mr. Reading: Aboriginal issues completely cross-cut the issues of all the institutes, but there is a type of discipline there and there are certainly issues around culture and geographic setting and different kinds of processes that justify an aboriginal institute. We looked at the proposed structures and the best we could figure out we were not represented on the interim governing council; it is kind of like feeling around in a dark room to figure out what the things inside are.

We assess that, in order to have meaningful participation in the CIHR, we would need to sit at the table with our own research director along with the other directors of the institute. That will be the collegial environment where research will get decided. Those scientific directors will talk.

For example, there is a Canadian aboriginal diabetes strategy, but diabetes cuts across all the areas of biomedical, population health, clinical and health services. All those areas need to have an aboriginal focus. The job will get done. We spend a tremendous amount of money on aboriginal research, but it is really fragmented and does not allow us to get beyond a certain point in terms of our understanding of what makes people healthier. We end up describing the problem very well. We have data coming out of our ears, but we do not have very much information on how to use that to transform the health of First Nations and to meet the needs of other Canadians.

There are all sorts of issues we need to look at. The Government of Canada has invested a lot of money in early childhood education, an intervention that has proved itself in promoting better health outcomes through life. Yet we know very little about how that works and what makes some of these programs better than others. That is just one line of interest.

We cannot replicate all the research dimensions. We need to work in meaningful ways across the country to put forward a research agenda within aboriginal communities.

The final important aspect is that we have had very little success when going to provincial Ministries of Health for research dollars, because research is seen as a federal jurisdiction. We have a special relationship with the federal government and we need to build our research capacities there. The next generation of students, native and non-native, will become involved in research, and in that way we will actually improve life expectancy figures.

Senator Carstairs: Ms DuBick, I do not know whether you were here when Dr. Friesen was speaking earlier this afternoon about the way in which Centres of Excellence would blend with the CIHR. He did not see the CIHR taking over from the Centres of Excellence. That gave me some hope.

This is the same question I asked Dr. Reading: What is the best way to deal with women's health issues? Is it through a separate, stand-alone women's institute, or is it through gender analysis in every institute that is established?

Ms DuBick: Ideally, I think it is both. Let me try to expand on that. The history of women's health research in this country has largely focused on biological and clinical factors. For example, there is a great deal of research on conditions specific to women, like cervical cancer, or conditions that occur most often in women, like breast cancer, and, maybe most of all, on women's reproductive and maternal roles.

One of my friends, who has a charming three-year old daughter, says that when one defines her health in terms of her role as a mother and in terms of her child's health, then one has missed the whole boat. There are also social, economic and cultural factors that impact health. We learned that from population health studies. These are the determinants of health that public health experts have been telling us about for 100 years, frankly.

The research in women's health is not as extensive as conducted by social scientists, where qualitative and quantitative research tend to be pitted against each other. Both have value in women's health and, I would argue, in men's health and in the health of any other defined group as well.

I want to be very careful here because I do not view women as merely another population group. The identification and categorization of people as women or men cuts across all the other population groups. It is the most fundamental defining factor of being human in terms of the social roles and the political, cultural and economic impacts that affect that gender.

There is a case to be made for a separate institute of women's health that can truly be transformative -- to use CIHR language -- in the four quadrants of research that are being proposed. Innovation is required in using all the methodologies at hand. There are the more familiar, traditional sciences and all the research that is being done in a qualitative way to "hear women's voices," as it is often described.

On the other hand, applying gender analysis is important across whatever institutes are finally established. Across the world, gender analysis is becoming an accepted way of doing things. It shows us how policies and programs and research can be applied and conducted to meet human needs based on gender and its meaning in terms of societal roles.

We have heard, and this is just a rumour, that there may be some kind of office attached to the CIHR central administrative function to help other institutes by providing this kind of cross-cutting gender analysis. The committee is probably aware that, in the United States, the Women's Health Research Institute has tried this. One difficulty was that no research money was attached to that office; that did not help in the generation of knowledge or in filling knowledge gaps.

That kind of office must be considered carefully because it can often be perceived as having a policing function in its monitoring of how something like gender analysis is applied. I would like to see, in other words, some kind of cross-cutting application of gender analysis in CIHR, but I also think there is a need for a separate women's health research institute.

Senator Carstairs: Mr. Upshall, I was struck by the statistic that mental illness absorbs 16 per cent of the health care dollar but only generates 5 per cent of the research dollar. Do you know why that is the case?

Mr. Upshall: It is stigma. That statistic refers to public research dollars. As I am sure you are aware, very few private institutions, outside the drug companies, engage in any kind of research, so probably the overall number is even less than that.

Senator Carstairs: It is strictly stigma?

Mr. Upshall: Yes. We have not had a voice at the table before. That is one of the reasons we are asking for a mental illness and mental health institute, so our voices can be heard. It is absolutely incredible. I am sure every one of you knows someone who suffers from a mental illness or whose family has been hit by our epidemic of suicide. It is very difficult to get people to talk about it. If someone who is gainfully employed experiences a depression, the last thing they want do is talk about it.

Having no one at the table means, unfortunately, that some of the weakest in our community have been ignored. I do not think there are any louder voices prevailing, but I am desperately hoping that the attention brought by CIHR to our community will provide us with our request.

In that regard, the CIHR interim governing council seems to be fixated on a reasonably small number of institutes. Because they are virtual institutes, because the vast majority of decision-making will be undertaken at the interim governing council level, I am at a loss to understand why having a small number of institutes is so important.

Fifteen institutes is not an ungovernable number in my estimation. It would provide a few more institutes for other groups, such as the Canadian Alliance on Mental Illness and Mental Health. It would allow us to have an executive director or an administrator at the table. It certainly would not take away anything from the peer review function, and would allow us to participate, not only in the top-to-bottom type of discussions within the institute, but in the cross-cutting discussions as well.

Mental health issues are equally as important to the Canadian fabric as cancer and heart and stroke issues, and are entitled to an place of equality. We must be able to shout from the rooftop that it is okay to have a mental illness. It is not a defining characteristic of your being. Those are issues that we must address in our community.

Senator LeBreton: I would like to pursue Senator Carstairs' point about the database on people suffering from mental illness. I suppose it is difficult to obtain the proper data unless you survey doctors on what medications they prescribe for patients. How do you obtain a true database on the scope of the problem? I agree with you, I doubt that there is a person at this table who does not know someone who is being treated in some way for a mental health problem. How do you establish a database?

Mr. Upshall: I am not a researcher, I am a consumer and a survivor. I am just learning about the establishment of a database through the Laboratory Centres for Disease Control activities. I filed a very sophisticated discussion paper with the clerk.

Again, we must get around the issue of stigma. Last fall, I was at a meeting with some StatsCan folks, who were telling me some of the statistics they had. I told them that I did not believe their statistics were accurate. I did not accuse them of not asking the questions, but I did not believe they were asking the right ones.

They gave me the honour of appointing me to the executive committee for the current Canadian Community Health Survey. We had a meeting last week to talk about the questionnaire that has been sent to 120,000 Canadians. They have identified a mental health and mental illness survey for 30,000 Canadians.

We were talking about getting people to respond honestly to questions about mental health. As an example, frequently you will see figures with regard to depression as being primarily female dominated, with males at lower rates. The issue for me has always been that males have been unable, unwilling, and totally inarticulate when it came to discussing their mental health. If the right questions were asked and confidence gained, a totally different set of answers would be forthcoming than those received when asking someone if they have been depressed.

Many of our statistics are literally unbelievable. We do not even have a really good database for suicide because it is so impacted by stigma, that when it happens, frequently families will request that their doctor put it down as natural causes. The real statistical data for suicide is substantially, I will not overemphasize it, but substantially, greater than the numbers you see. As you know, Canada has an unenviable rate of suicide.

Senator LeBreton: In our health care study, we saw companies that dealt with doctors. They followed trend lines based on the types of drugs that were prescribed. I was wondering if there were any way, through that venue, to obtain a better sense of how many people really are affected.

Mr. Upshall: Valium, Prozac, Paxil and other drugs that treat depression are among the highest sellers. The companies that manufacture them are among the most profitable. I can give you that statistic, for sure.

There has been no effort to really correlate that data. The problem is breaking down the inter-provincial or provincial health barriers on privacy of information. Perhaps Dr. Keon would know more than I, but there are some major privacy issues or provincial ownership issues on how the data will be used that I think have not yet been overcome. Hopefully, they will be. It is absolutely essential.

With regard to drugs on the provincial scene, frequently many of our most important drugs are not made available to those who need them the most until those people have gone through the older types of drug therapies. Talk to some of the folks on the streets. In our considered opinion, the streets are the emergency wards for a lot of psychiatric patients.

Senator Robertson: Mr. Upshall, I have a supplementary question to some of the things that you have been saying. Is the lack of research that you identify in Canada paralleled in other developed countries?

Mr. Upshall: Yes. However, in the framework for action paper that we just filed with the federal-provincial-territorial advisory network for mental health, there are summaries of what is happening in Australia and New Zealand. Quite frankly, they are much further ahead than we are. I wish I had my other colleagues here. I believe the United Kingdom is further ahead in its proposals as well. The United States, I think may well be philosophically ahead of us, but practically speaking, there is no indication that they are making health care or research available to those who desperately need it.

Senator Robertson: Dr. Reading, you mentioned earlier that your research on aboriginal peoples was very fragmented, if I understood you correctly. Why is that?

Mr. Reading: I can tell you a little story. I graduated from the University of Toronto in 1994 with a Ph.D. The experience of a relatively new graduate is to come out of a system where there was not a lot of opportunity. In other words, there is a brain drain in research.

I think that people of my graduating class, and after that, have stayed in research because they have a real passion for the work. However, it was not properly funded. Now the CIHR is coming along and injecting cash into it, things are going to get better in terms of connecting research that was generally fragmented.

In aboriginal health it is particularly bad because it was not really fully funded in the first place. There were a couple of university centres with whom we have been working. Notably, there is a centre in McGill that looks at indigenous nutrition. The University of Manitoba, the University of Alberta, UBC, and a couple of other universities, including McMaster and Dalhousie, have centres looking at aboriginal health issues. They operate without a strategic plan, but they work very hard and produce incredible results.

It is open to exploitation. A graduate student can show profound differences in health status between a native and non-native community. That is fine. Get those descriptive results. However, when they finish their thesis, they move on to another field of inquiry.

There is no social capital being built up because there is no institution. There is no structure in place to consolidate aboriginal health information and to go beyond the stage of just describing certain conditions, with some exceptions.

There are some processes that are starting to look at that. Research in other areas, such as women's health, will have an aboriginal component to it, but it will be a discrete box within the business that they do. Why cannot we take those boxes that deal with aboriginal health across a life span in remote and urban communities and start to connect them together in order to really understand what is going on.

Senator Robertson: Do you see the possibility of a coordinating process?

Mr. Reading: Absolutely. That would also send a strong message to the community that the Canadian government is focusing seriously on the concerns of aboriginal people.

Senator Robertson: Will it be difficult to gain back the confidence of aboriginal people who, as you say, have been studied to death?

Mr. Reading: It is remarkable how important the way you do things is in approaching native communities. If people see that their interests are being respected, then they will participate. Things can be done very quickly, and with enthusiasm, because people have not felt a part of the process in the past. It has been very paternalistic.

Now many institutes are being created where native people are starting to manage their own affairs. However, there would still be a vacuum if the process did not include the creation of advanced knowledge. That seems to be a fundamental prerequisite for native people enjoying more self-determination.

[Translation]

Senator Gill: My questions are for Dr. Reading. On the one hand, do you think the mental health of Natives is deteriorating? On the other, will Bill C-13 help you attain your goals, such as, for example, creating an institute for the Native community, if that were your objective? Finally, do you have the support of the National Assembly concerning these objectives you are pursuing?

[English]

Mr. Reading: Your first question dealt with mental health in native communities. The non-insured health benefits program supplies drugs and other non-insured benefits to First Nations on reserve.

The highest cost-driver of that system is the psychoactive group of medications, the drugs that change your behaviour, your depressive state. I am not a psychologist, I am a community health specialist, but I do know that there are state and trait aspects of mental health. Certain environmental conditions, such as unemployment, lack of a future, poor housing, no economic means to support yourself or your family, will lead someone naturally into depression. Thus, the conditions that result in depression are very high in native communities.

Whether there is an organic base, psychosis, schizophrenia or other, I could not say. However, these kinds of depressive circumstances seem to be totally out of control. We have suicides among children as young as eight years old. I go to many communities across the country where this is a major problem. Those communities are paralyzed.

One problem with researching mental health and depressive states is you must be very sensitive in how you approach the issue. One must ensure that there is a proper system of referrals after a person has identified some issue. For example, if there were sexual abuse, physical violence, or suicide ideation, those things would need to be referred to a proper health professional to ensure that the interview did not cause more problems.

The process of comprehending the amount and nature of disease is an intensive one. This is one of the areas that we have targeted for closer exploration with our colleagues in the CIHR.

Your second question was whether the institute would address these issues in native communities. We are prepared to work with our research colleagues to build capacity within the native community and educate people who are willing to work there to address the entire range of serious health concerns.

Research will not be a panacea. It will not solve the problems of socio-economic status in remote communities and lack of employment, but it will give us a blueprint on how to address the concerns within the native community. Without research, the government will really just be throwing money into a dark hole.

We want to look at what makes some communities healthy and others not. We will then try to share those resources in the network across communities. This is part of a larger movement in terms of the creation of an aboriginal health infrastructure. This process will include looking at health services, how they are delivered, and survey-type research in communities, but deeper questions must also be asked that will require specialists in various highly trained disciplines. It is all about innovation, being on the cutting-edge of what we do not know, and how to find solutions to pressing problems that we do not fully understand.

If we want to demonstrate some good benefits or outcomes of the CIHR in its early days, we can focus on the native community and show some good results of projects that will change things quickly. The opportunity to change is so great within that community.

Senator Gill: Do you get support from the Department of Health?

Mr. Reading: We have worked very closely with them. In fact, one of my colleagues here is from Medical Services Branch of Health Canada. We have worked very closely with the Department of Health and we also have the support of Phil Fontaine, the Grand Chief of the Assembly of First Nations.

Senator Gill: I do not have questions about support from Phil Fontaine, I am just questioning the fact that you want to have an institute. Do you have support for that?

Mr. Reading: I understand they support it and see the usefulness of it. We are hopeful that the interim governing council and the president also see the usefulness of it.

Senator Keon: It has been very interesting listening to all three of you. Your vision of CIHR is that it would be a number of institutes -- mental health, women's health, native people's health. How would this integrate into the core concept of CIHR?

We often blame our health care system, but the big problem in health care has been the disconnection between our health research and the outcomes that we know about, the disconnection between our population health and what we know about that, the disconnection between our public health and what we know about it, and the disconnection of our health care system from the other three.

Thus, we have these four different pods of information that hang out there on their own. The worst example of all is with the indigenous people. The situation is terrible. For example, there are places up north where 30 per cent of the kids are deaf by the time they are 12 years old. This is disgraceful, because all they need is antibiotics. We are not putting the information we have on population health back into the health care delivery system.

I want to know, from each of you, how the CIHR should be designed to overcome these problems.

Ms DuBick: The term "disconnect" has some resonance when considering our Centres of Excellence. In particular, when talking about the quadrants that have to do with population health, health systems and services, I believe that the Centres of Excellence are breaking new ground. They require their research to address issues in population health, and health systems and services, to ensure that the research is designed to provide policy recommendations. Thus, we can ensure that decision makers will have the information they require to create policies, programs and services that can do a better job, in our case, for women's health.

Over the years of our mandate, we have developed an infrastructure of researchers, policymakers, health advocates, community groups and service providers who work in women's health and who have worked hard to "connect" that "disconnect" again. They have tried to bridge the languages of academic research and community organizations, because they are different tongues really, and find a way to balance the interests of researchers, community groups and policymakers and end up with product that benefits them all. I am not saying that we are perfect, but I believe our experience should not be lost and that we can offer, perhaps, some wisdom to the CIHR in terms of attempting that balancing act among interests and trying to be transformative and innovative.

Mr. Upshall: I would agree with much of what Ms DuBick had to say. The mental illness and mental health community constitutes a huge portion of the population. That fact alone dictates that we be at the table. The proposed Canadian Institutes of Health Research legislation is set up to deal with your concerns in the sense that the vast majority of decision making will be at the governing council. Eighty per cent of the research grants will be provided through the non-institute granting peer review processes and the researcher will have the opportunity to choose the institute with which to affiliate.

It is a question of trust, in that we want the opportunity to be at the table so that we can understand and trust the process. Involvement in the process, for our community, has been negligible. Therefore, we do not trust past processes. This is a new process and we would like to feel that we can trust it. The best way to do that is to be at the table. We have a research community that is highly recognized and willing to involve, as some other research communities are not, people such as the consumer/survivors and those who can make a difference in determining research patterns.

I do not believe that 15 or 20 institutes would be unmanageable within the structure of 80 to 20. The more institutes there are, within reason, then the more opportunity the executive director, or the institute advisory board, would have to deal with such things as challenge grants and develop consideration of issues that would include native mental health, native health, women's health, or in our case, mental illness and mental health considerations.

The other aspect, and particularly in respect of mental illness and mental health issues, is that we are not only in a silo of our own, but we are also quite involved in many cross-cutting activities. We anticipate that collegiality would be demanded and our researchers would be anxious to work with the researchers of other communities. I believe that the opportunity exists to meet with them and develop cross-cutting and, perhaps, joint challenge programs. These collaborative efforts between one or two institutes have a greater opportunity to exist than if we have a massive governing council with four or five virtual institutes trying to manage the whole of health care research in Canada. I hope that helps.

Mr. Reading: It is a very interesting question that is a bit tricky to answer. Actually, it is a question of healthy public policy.

I have worked in hospitals, in political organizations, in health centres in the north, and I have worked as a university-based researcher in all kind of communities. Thus, I have seen the dilemma -- the stacks of little empires that do not talk to each other. I believe that the CIHR model, as put forward, is trying to create national networks where researchers collaborate in networks of perhaps 500 trained researchers to attack various issues around health. When that kind of meeting of the minds takes place, the result is incredibly innovative solutions to very complex problems that you would not achieve with only one Nobel Prize laureate sitting in a lab or office somewhere. The whole process of CIHR is an example of collaboration across the sectors.

Once the model proves itself -- innovative and transformative -- it will connect ministries at the level of governance and the result will be healthy public policies. Canadian core values are equity and fairness. If it were simply a question of money, goodwill, or health statistics that would improve the well-being of native people, then it would have already happened. It is a question of connecting people in national networks and creating healthy public policies that make communities better places to live -- easy to say but very hard to do. It is a question of the responsiveness of Indian Affairs to some of the housing conditions on reserves and understanding that it is in everyone's interest to improve those determinants of health. There will be some downstream savings in terms of costs, and the same will apply to areas such as nutrition and providing exercise programs for children -- keep them busy with healthy activities so that they are less tempted to get involved in minor crime. There is a great deal of boredom in some communities. Therefore, it is wise to provide a determinants of health model, then take the results and feed them to various public policy forums to produce changes.

Most of the communities in Canada have 90 per cent unemployment. I do not care how many doctors or nurses are placed in the community, health status will not improve under those conditions. How much evidence do we have to pile on to convince policymakers to improve those conditions? I am not trying to paint a doomsday scenario, and there are many strategic investments being made, such as early childhood education, but we must build on those kinds of success factors. If we cannot participate as equal and meaningful players in this collegial environment of these national institutes, then we must go, cap in hand, and ask researchers, scientific directors and members of the governing council, "How will you address our concerns around everything from tuberculosis to diabetes and all the other health concerns?"

Finally, the United Nations, for seven years in a row, has said that Canada is the best place to live on the planet. If that had happened once or twice, we could say that it was a fluke, but not when it has happened seven years in a row.

Now, we have this population that is not difficult to find; we know exactly where they live, and we can intervene and can send a strong message that we care about their health concerns. However, if that does not happen, we may regress a little and we feel that we are not really being adequately represented, and that our concerns are not really respected.

The Chairman: Honourable senators, I will now invite our last group of witnesses to the table. They are Dr. Henry Dinsdale and Dr. Richard Carpentier of the National Council on Ethics in Human Research.

Dr. Henry Dinsdale, Immediate Past-President, National Council on Ethics in Human Research: Honourable senators, I will try to pick out a few of the highlights from the material that has been circulated.

I am a medical neurologist, professor emeritus at Queen's University, and immediate past-president of the National Council on Ethics in Human Research. I have also served as a member of council and as vice-president of the MRC and president of the Royal College of Physicians and Surgeons of Canada, which are all groups obviously very interested in this legislation.

Dr. Richard Carpentier, Executive Director of the National Council on Ethics in Human Research, obtained his doctorate in philosophy and, in addition to administrative duties, has extensive hands-on experience through his membership on research ethics boards.

NCEHR is very supportive of Bill C-13. This vision will encompass a wide range of research disciplines that, collectively, will contribute to a better understanding of the determinants of health and the cause and cure of illness among Canadians.

Health research is exciting and full of opportunities. Dramatic advances in prevention and treatment of disease have come from research programs at universities, hospitals, and in the private sector. At the same time, we have seen public confidence in science and scientific advice to government rocked in the United Kingdom by such developments as mad cow disease and its apparent transmission to humans. There is public uncertainty about applications of biotechnology and gene therapy. Infrequent examples of scientific misconduct in laboratories and clinical trials are made highly visible owing to a new probing environment by the national media.

Public interest in science is increasing, but public trust in science requires transparent and credible procedures in many areas, and none more important than the protection of the human subjects of research. Federal policy must preserve the benefits of research while at the same time protecting against possible abuse or unnecessary harm to research subjects. NCEHR notes with interest that amendments to the bill include strengthening the application of ethical principles. The research councils have set high standards in their tri-council policy statement, but effective oversight is required to ensure compliance with those standards.

I have just a brief word about the National Council on Ethics in Human Research. The mission is simple: to advance the protection and promotion of the well-being of human participants in research and to foster high ethical standards for the conduct of research involving humans.

The national council was in fact founded in the early 1980s, when Dr. Pierre Bois, then president of the Medical Research Council, felt that it was advisable to have an arm's length autonomous organization to assist research ethics boards in their work. At the request of the Medical Research Council, and with additional funding support from Health Canada, the Royal College of Physicians and Surgeons agreed to take on this job. The NCEHR has been located in the Royal College since that time, which has given support in kind.

NSERC and SSHRC joined the funding group supporting NCEHR in 1995, and the National Council on Bioethics in Human Research changed its name to the National Council on Ethics in Human Research to reflect its broadened mandate.

NCEHR's council now includes representatives from aboriginal and non-aboriginal communities, and a variety of disciplines, including ethics, law, sociology, nursing, medicine, philosophy, sociology and journalism. It is important for you to realize the central importance of research ethics boards. The Nuremberg Code, the Declaration of Helsinki, and the tri-council policy statement all require that the design and performance of experimental procedures be approved by an ethics committee independent of the investigator and sponsors.

The first duty of the ethics board is to protect the interests of human participants in research. These are small committees made up from a variety of disciplines, as noted in these notes, and usually such a committee is an under-resourced and under-supported process in the institution.

I will not review in detail the various terms of reference of NCEHR. Suffice it to say that those listed show the ways in which NCEHR attempts to assist and support research ethics boards and their works throughout the country. We achieve this through regional workshops, site visits, publications, and a heavily used list serve.

CIHR will encompass a broad and exciting range of health research, but CIHR will not support most of the health research in Canada. Industry, voluntary agencies, sources from other countries, and even unfunded research will comprise the majority of biomedical research in Canada. NCEHR's mandate is the protection of all human subjects involved in research, irrespective of the sponsorship of that research.

Most REBs in Canada are affiliated with institutions, such as universities and hospitals. However, the recent expansion of industry sponsored clinical trials has been accompanied by the rapid growth of independent, for-profit, contract research organizations. They provide drug development services to the pharmaceutical, generic drug, and biotechnology industries. CROs make increasing use of privately organized for-profit REBs, designed for rapid review of protocols. There is no mechanism in Canada at the present time to determine the scope and impact of for-profit REBs.

In the United States, the Office for the Protection From Research Risks has the force of legislation to investigate REBs and their process of ethics review, whether in universities, teaching hospitals, or the private sector. Vigilance by OPRR has in fact resulted in the suspension of research in a number of prestigious American universities during the past year because of deficiencies in their ethics review procedures.

NCEHR has a voluntary site-visit program that provides advice to REBs about their ethical review of research. However, in Canada at the present time there is no process of certification, accreditation or regular inspection of the research ethics review procedures at universities, hospitals, or in the private sector. NCEHR believes that a regular process of assessment must be developed. In order for such a process to have the public's confidence, it must be transparent and at arm's length with the sponsors of research. NCEHR is examining models of such review procedures. Given appropriate resources, it is prepared to implement the most appropriate model.

MRC created a standing committee on ethics a number of years ago. That committee and its staff have promoted debate about ethics in MRC and have created initiatives such as the tri-council policy statement. Proposals have been forwarded from that committee for continuation of its activities in CIHR. Other groups have submitted opinions about the shape and activities of ethics in CIHR. Whatever that final form may be, it is essential for CIHR and NCEHR to have effective communication so that their distinctive and complementary roles can serve the interests of the subjects of human research.

In conclusion, NCEHR strongly supports Bill C-13. However, it must be accompanied by increased resources for the heavily burdened ethics review process, linked to but independent from the funders of research. The time is overdue for the creation of an effective, efficient, and independent oversight mechanism of the process of ethics review, not only for projects funded by CIHR but for that majority of research with other sponsors.

NCEHR looks forward to working with CIHR and Health Canada on these important issues, of which the ultimate aim is the protection of research subjects.

The Chairman: Thank you, Dr. Dinsdale. You were not here earlier today when we had an interesting exchange with Dr. Bartha Marie Knoppers of the University of Montreal. As a result of that, we came to the conclusion that we need to have a much longer discussion outside the context of this bill on the ethics question.

I ask this question, not to provoke a debate, but as a genuine question, to try to understand: Does the medical fraternity distinguish between ethical decisions and moral decisions? I do not want to enter into the abortion debate, but it provides an interesting example. There are a great many people who would take the view that their position on abortion is a moral judgment. Do your ethics boards consider abortion to be an ethical issue or something else? Is that an issue with which those boards would be concerned? To that extent, are morals and ethics different, or are they the same?

How do you differentiate between subjective values, which are moral issues, and ethics, which, I presume from the way you describe it, has, in theory at least, an element of objectivity?

Mr. Dinsdale: The role of the research ethics boards to which I referred is to focus on the first word, "research". These ethics boards simply review the ethical credibility of a research project. An institution, a hospital, for instance, will undoubtedly have another ethics committee of the board that will deal with the more broadly based moral issues.

The Chairman: Therefore, something could be ethical but immoral?

Mr. Dinsdale: I am on shaky ground, Mr. Chairman.

The Chairman: I am not trying to provoke an argument. I am simply trying to understand whether something that is ethical to you might not be ethical to me. In other words, to what extent are ethics an objective measure, which is the way one thinks of research, versus the collective subjective judgment of the people on the board? That is what I am trying to understand.

Mr. Dinsdale: I would like to come back to the distinction between the two kinds of ethical discussion, because that is important. For instance, if one were in a religious hospital and the ethical advice of the board of highest discussion in that institution considered abortion to be immoral, such procedures would not take place in that institution.

If we moved over to a secular institution where abortion was an accepted process within their health services, an individual in the department of obstetrics might say, "I would like to do a research study on the psychological effects on young unmarried women having abortions." The research ethics committee would then review that application. It would look at the scientific question to determine whether it was a good question and whether it could be answered with the proposed study. In other words, they would pass a scientific judgment. Then there would be a number of issues about the protection of the subjects who would be enrolled, their confidentiality, and so forth.

In a way, there are two different levels and, therefore, the research ethics boards ordinarily do not get involved in those broader moral questions.

The Chairman: So to that extent there is presumably some more objective measure of whether something is ethical?

Mr. Dinsdale: Yes, and the fundamental ethical principles that underline good research are very well understood by the conscientious community. For instance, they arise from obvious sources.

The Chairman: Even by people of different moral persuasions?

Mr. Dinsdale: Exactly. Just arising out of the Nuremberg Trials, one of first principles of any involvement of a human in research is voluntary consent.

Senator Carstairs: Thank you, Dr. Dinsdale, for raising an issue that no one else has raised, that being that the work of any research community is only as good as the peer review, and also the ethical review that goes along with that peer review. I take heart from your comment that with anything this new institute does it will have to also put money aside for the kind of ethical review you recommend in your paper.

I will go a little further than that. We have had some incidents this year in which researchers have seriously questioned what their own ethical problems were with a contract with a particular pharmaceutical company. Is there a need to go further? Is there a need sometimes for legislation to ease the ethical dilemma that researchers might find themselves in? They may have a contract with a particular company, but they also have a contract with the human race. It seems to me that a contract with the human race takes precedence over their contract with the research company. Do we need to go further?

Mr. Dinsdale: There are two or three very critical elements in that question. First, with regard to whether there is need for legislation, I find the scene in Canada extraordinarily complex in trying to get an oversight mechanism on the research ethics process review.

For instance, I referred to some problems at American universities. The usual problems were inadequate staffing of the research ethics board; too much work to do; doing too much too quickly and not thoroughly enough; not keeping notes, which is a very bureaucratic penalty to lay on them; and very little monitoring. These are key problems.

Justice Krever says that the monitoring of any regulation group will only be as good, by and large, as the amount of resources given to it, and they will never be enough to do what people would want in a perfect world.

There is an example in Alberta. It is a unique and very interesting model. They are trying to get a handle on the research being done in the offices of physicians who are not affiliated with an institution. If a drug company says it would like to do a particular study and asks the physician to gather a certain number of patients, the physician may join up. Where is the research ethics board? Is there an independent research ethics board that reviews the quality of that investigation, and how can we get a handle on it?

The Alberta College of Physicians and Surgeons offered to set up its own committee. Every physician licensed in Alberta who participates in a clinical trial who is not at one of the universities or in an institution that has an REB must have that research vetted by our research ethics board. Alberta is the only province right now that has an oversight mechanism to at least get an inventory of what is going on in the province.

Do we need legislation? Presumably, the college has been legislated and, under its powers, it can do certain things, so one might say we do not need special legislation there. How do we get at the independent research ethics boards?

The Royal College and the accreditation system of hospitals, by dint of moral suasion, ends up having people agreeing. The universities agree to have the Royal College come and evaluate their program and offer approval. The hospitals agree to let the review group come in and offer an accreditation. We like to think in Canada that those voluntary mechanisms can still be effective and efficient. Our American neighbours tend to go for harder-edged legislation, which some feel can lead to a kind of rush to the bottom in terms of the standards required in legislation.

We have talked about this a good deal and there seems to be a hope that credible mechanisms can be put in place and there will be no need for legislation. If that is naive in terms of the enormous financial issues and the other elements at work in this business as it evolves, I just do not know yet.

Senator Carstairs: My final question deals with children. Rightfully, we are doing a great deal of research on children. There is a famous Manitoba case of a boy who was accidentally castrated through physician error and was raised as a girl, while his twin brother was raised as a boy. In watching that, it seemed that the boys wanted out of the research project long before the parents were willing to let them out of it. When do children get the right to make decisions about their voluntary consent?

Mr. Dinsdale: That is an area that has been debated strongly. The National Council on Bioethics held a number of workshops and came up with position papers that modified some of the MRC rules in this area.

You will get differing opinions on this. There is the legal age of consent, yet studies clearly show that children aged 12 or 13 can make very good judgments in many areas. A research ethics board, reviewing this in the context of research, would take each case on its own merits in terms of the aspects involved. Just last week, we were talking about a case in Minneapolis, where a researcher wanted to give high school children, aged 12 to 14, a questionnaire relating to sexual practices and their knowledge of AIDS and how one influences the other. The investigator was going to send a closed letter to the parents asking them for passive consent: "Would you agree to have your child fill in a questionnaire?"

It is incredible the questions that arise out of a project like that. For instance, how many parents had English as a first language and could even read the letter that came to them? How were the questions phrased that the child was going to answer? If he or she ticked off a bunch of noes, would it look as though other kids in the classroom must be behaving differently? It went on and on.

By and large, the feeling was that a 13-year-old could fill out such a questionnaire; but, in looking at it closer, there are many problems. What is the school board's position?

Each case should be decided on its own merit. I am certainly not an expert in that area in terms of the case law, as it were.

The Chairman: In reply to Senator Carstairs, you said you would prefer not to have legislation, but would hope to get a set of practices that are essentially voluntary. There are rumours that legislation might be forthcoming from the work of the Royal Commission on Reproductive Technology. Is it a fair comment that, if you could avoid legislation in that specific case, that would be the preferable way to go?

Mr. Dinsdale: I was certainly not on that royal commission, but I think the issues there are somewhat different. That is an example of how public and professional attitudes can change with time. If you look at the minutes of the discussion and at the recommendations coming from the royal commission, and some things that were thought must go into the Criminal Code, it is obvious that people have changed their opinions about that. The public moves on.

Perhaps legislation is required, for instance, to ensure that a professional who wants to head a reproductive clinic must be licensed -- and through what licensing mechanism I do not know, but things change so rapidly that any legislation must be very enabling.

Senator Keon: When CIHR is up and running, do you see the Royal College being capable of continuing to house and foster the National Centre on Ethics in Human Research?

Mr. Dinsdale: The Royal College has provided support in kind, providing space and so forth. There is still a willingness to continue to do that. Speaking from the viewpoint of a clinical investigator, there is an intermediate area between the Royal College, NCEHR and CIHR that has not quite been grasped. Personally, I am hoping to see the Royal College take more initiative in this area. It deals with the responsibilities of clinical investigators with regard to clinical trials and other things.

We have a responsibility, obviously, to ensure that the very best question is being asked and that the patients who agree to be subjects are being involved in the very best kinds of projects, because there is always a finite number of appropriate patients for various clinical trials. In my opinion, neither the MRC nor the Royal College, nor any other professional group at this point -- even though MRC has done such things as create the gold standard for the MRC scholar and so forth -- no one has given the suggestion that the neurologists or the cardiologists should get organized in a particular way, with their scientific subcommittees, and tell industry: "Look. You show us your five best drugs coming down the pipe, and our scientific committee will decide which drug we think is most meritorious of evaluation." Since we would have all the key centres across the country agreeing to work within this consortium, we would begin to get some credibility. No one has yet done that.

I simply mention that because there are some ethical aspects there and some training aspects that would involve the Royal College, and, coming back to standards created by the funding councils, there is a kind of network.

In any case, I believe the Royal College is prepared to continue to provide a home for NCEHR at this point in this time.

The Chairman: Thank you very much, Dr. Dinsdale.

We are adjourned until 11 a.m. tomorrow morning.

The committee adjourned.