HEAL Committee Meeting

37th PARLIAMENT, 1st SESSION

Standing Committee on Health

EVIDENCE

CONTENTS

Wednesday, April 17, 2002

¹

1540

The Chair (Ms. Bonnie Brown (Oakville, Lib.))

Dr. Alan Bernstein (President, Canadian Institutes of Health Research)

¹

1545

The Chair

Mr. Rob Merrifield (Yellowhead, Canadian Alliance)

Dr. Alan Bernstein

Mr. Rob Merrifield

Dr. Alan Bernstein

¹

1550

Mr. Merrifield

Dr. Alan Bernstein

Mr. Merrifield

Dr. Alan Bernstein

Mr. Rob Merrifield

Dr. Alan Bernstein

Mr. Rob Merrifield

¹

1555

Dr. Alan Bernstein

Mr. Rob Merrifield

Dr. Alan Bernstein

Mr. Rob Merrifield

Dr. Alan Bernstein

Mr. Rob Merrifield

Dr. Alan Bernstein

The Chair

Ms. Pauline Picard (Drummond, BQ)

º

1600

Dr. Alan Bernstein

Ms. Pauline Picard

Dr. Alan Bernstein

Ms. Pauline Picard

Dr. Alan Bernstein

The Chair

Mr. Reg Alcock (Winnipeg South, Lib.)

º

1605

Dr. Alan Bernstein

Mr. Reg Alcock

Dr. Alan Bernstein

Mr. Reg Alcock

º

1610

The Chair

Mr. Rob Merrifield

Dr. Alan Bernstein

Dr. Alan Bernstein

Mr. Rob Merrifield

Dr. Alan Bernstein

Mr. Rob Merrifield

Dr. Alan Bernstein

Mr. Rob Merrifield

Dr. Alan Bernstein

Mr. Rob Merrifield

Dr. Alan Bernstein

Mr. Rob Merrifield

Dr. Alan Bernstein

Mr. Rob Merrifield

º

1615

The Chair

Ms. Judy Sgro (York West, Lib.)

Dr. Alan Bernstein

Ms. Judy Sgro

Dr. Alan Bernstein

Ms. Judy Sgro

Dr. Alan Bernstein

Ms. Judy Sgro

Dr. Alan Bernstein

Ms. Judy Sgro

º

1620

The Chair

Mr. Stan Dromisky (Thunder Bay--Atikokan, Lib.)

Dr. Alan Bernstein

Mr. Stan Dromisky

Dr. Alan Bernstein

Mr. Stan Dromisky

Dr. Alan Bernstein

Mr. Stan Dromisky

Dr. Alan Bernstein

Mr. Stan Dromisky

The Chair

Mr. David Anderson (Cypress Hills--Grasslands, Canadian Alliance)

Dr. Alan Bernstein

º

1625

Mr. David Anderson

Dr. Alan Bernstein

Mr. David Anderson

Dr. Alan Bernstein

Mr. David Anderson

The Chair

Mr. Paul Szabo (Mississauga South, Lib.)

º

1630

Dr. Alan Bernstein

º

1635

The Chair

Ms. Judy Wasylycia-Leis (Winnipeg North Centre, NDP)

º

1640

Dr. Alan Bernstein

Ms. Judy Wasylycia-Leis

Dr. Alan Bernstein

Ms. Judy Wasylycia-Leis

The Chair

Mr. Jeannot Castonguay (Madawaska--Restigouche, Lib.)

º

1645

Dr. Alan Bernstein

Mr. Jeannot Castonguay

The Chair

Mr. David Anderson

The Chair

Mr. Jeannot Castonguay

Dr. Alan Bernstein

º

1650

The Chair

Ms. Pauline Picard

Dr. Alan Bernstein

The Chair

Ms. Hélène Scherrer (Louis-Hébert, Lib.)

º

1655

Dr. Alan Bernstein

Ms. Hélène Scherrer

The Chair

An hon. member

The Chair

Dr. Alan Bernstein

The Chair

Dr. Alan Bernstein

The Chair

Dr. Alan Bernstein

The Chair

»

1700

Dr. Alan Bernstein

The Chair

Dr. Alan Bernstein

The Chair

»

1705

Dr. Alan Bernstein

The Chair

Dr. Alan Bernstein

The Chair

Dr. Alan Bernstein

The Chair

»

1710

Mr. Rob Merrifield

Dr. Alan Bernstein

Mr. Rob Merrifield

Dr. Alan Bernstein

Mr. Rob Merrifield

Dr. Alan Bernstein

Mr. Rob Merrifield

Dr. Alan Bernstein

Mr. Rob Merrifield

Dr. Alan Bernstein

Mr. Rob Merrifield

The Chair

Mr. Paul Szabo

Dr. Alan Bernstein

Mr. Paul Szabo

The Chair

Mr. Paul Szabo

The Chair

Mr. Paul Szabo

Dr. Alan Bernstein

»

1715

Mr. Paul Szabo

Dr. Alan Bernstein

Mr. Paul Szabo

Dr. Alan Bernstein

Mr. Paul Szabo

Dr. Alan Bernstein

Mr. Paul Szabo

The Chair

Mr. Paul Szabo

The Chair

Mr. Paul Szabo

Dr. Alan Bernstein

Mr. Paul Szabo

Dr. Alan Bernstein

»

1720

The Chair

Ms. Carol Skelton (Saskatoon--Rosetown--Biggar, Canadian Alliance)

Dr. Alan Bernstein

The Chair

Dr. Alan Bernstein

The Chair

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CANADA

Standing Committee on Health

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NUMBER 067

l

1st SESSION

l

37th PARLIAMENT

---

EVIDENCE

Wednesday, April 17, 2002

[Recorded by Electronic Apparatus]

¹  (1540)  

[English]

    The Chair (Ms. Bonnie Brown (Oakville, Lib.)): Good afternoon, ladies and gentlemen. It's my pleasure to call to order the special meeting of the Standing Committee on Health and to welcome, on your behalf, Dr. Alan Bernstein, who is head of the Canadian Institutes of Health Research. I believe Dr. Bernstein has an opening statement to make, and when he's finished, we'll proceed to questions from members of the committee.

    Dr. Bernstein, you have the floor.

    Dr. Alan Bernstein (President, Canadian Institutes of Health Research): Thank you, Madam Chair and members of the committee.

[Translation]

    Thank you for inviting me to appear before your Committee to discuss the CIHR guidelines for financing all research on human pluripotent stem cells, be they from adults or embryos.

[English]

    When CIHR was created by Parliament two years ago this month, MPs in the House described their vision for CIHR as a proactive, strategic organization that would be more than just a funding agency--an agency that would, and I quote from the act:

...excel, according to internationally accepted standards of scientific excellence, in the creation of new knowledge and its translation into improved health for Canadians...by

(f) addressing emerging health opportunities...and challenges and accelerating the discovery of cures and treatments....

    Furthermore, Parliament stressed that CIHR should take into consideration ethical issues.

    The CIHR has embraced this mandate in its short history.

    For example, we have launched national initiatives in a wide range of areas, including biosecurity, food and water safety, tobacco addiction, placebo use in clinical trials, adverse events in Canadian hospitals, obesity, osteoarthritis, training the next generation of health researchers, building research capacity in all regions of Canada, and stem cells.

    CIHR has accounted to Parliament on its first year of operation through several presentations to House of Commons steering and standing committees and through the tabling of our first annual report on February 6, 2002.

    Many members of Parliament are familiar with the activities of CIHR and have shown their support for CIHR decisions. We've had the pleasure of participating with them and many of you on some of our funding announcements. We continue to be grateful to you as we fulfil our bold new mandate.

    The governing council of CIHR recognizes the importance of fulfilling its mandate within the laws and regulations of the land. In the case of stem cell research, a promising area of research at the leading edge of science, we identified a regulatory void.

    CIHR funding on stem cells has to date been mostly in the areas of animal and adult stem cells. For over 40 years, Canada has been one of the leading countries in the world in stem cell research. In the past five years alone, Canadian researchers, including Derek van der Kooy, Sam Weiss, John Dick, Keith Humphries, Andras Nagy, Janet Rossant, and Freda Miller, have carried out truly pioneering research on stem cells in the retina, brain, blood, mouse embryo, and adult skin.

    Allow me to review Canada's regulatory framework prior to CIHR's implementation of its funding guidelines for human pluripotent stem cell research.

    It is important to keep in mind that human embryo research has been explicitly permitted in Canada. Prior to March 4, 2002, Canada's health research community working in the field relied on provisions of the Tri-Council Policy Statement:Ethical Conduct for Research Involving Humans, approved by Canada's three funding councils in 1998, two years prior to the creation of CIHR.

    With respect to research involving human embryos, article 9.4 states, and I quote:

It is not ethically acceptable to create human embryos specifically for research purposes. However, in those cases where human embryos are created for reproductive purposes, and subsequently are no longer required for such purposes, research involving human embryos may be considered to be ethically acceptable....

    In short, given the absence of any federal legislation or CIHR guidelines, the door was open to derive and use human stem cells for research.

    Canada's health research community and the voluntary health sector have recognized the potential of stem cells to treat serious diseases that affect millions of Canadians. Indeed, since the 1960s, as I said, Canada has led the world in stem cell research.

    Consistent with our mandate to undertake research within an ethical framework and considering the current regulatory system that would allow human embryo-derived stem cell research to go forward without any special guidelines, CIHR's governing council established a working group in October 2000 to develop clear guidelines through an open and transparent process. This group was composed of outstanding Canadians--researchers, clinicians, ethicists, and lawyers. As well, Professor Anne McLaren, one of the world's leading embryologists and the adviser to the U.K. government on stem cell research, was part of that committee, as were two observers from Health Canada.

    The working group was chaired by Dr. Janet Rossant, a CIHR distinguished investigator, member of the Royal Society of Canada, and winner of the Nobel award from the National Cancer Institute of Canada and the McLaughlin medal from the Royal Society of Canada. Draft guidelines were made public on March 31, 2001, followed by several months of public consultation. Feedback was received from 27 groups and 89 individuals.

    At its meeting on January 16, 2002, the governing council received final recommendations from the working group and approved a set of guidelines. These guidelines were then made public on March 4.

    I wish to emphasize that the guidelines are a necessary step intended to fill a legislative and regulatory void in Canada. New legislation in this area would, of course, take precedence over the guidelines where they intersect. In the meantime, the guidelines provide a national, harmonized, ethical framework for research that would have been permissible under the tri-council provision. As well, CIHR's guidelines will ease researcher acceptance of federal legislation and will facilitate the transition to a regulatory environment.

    I also want to emphasize that CIHR has not been operating in isolation. Members of the working group, including Dr. Rossant and Dr. Baylis, assisted Health Canada with relevant aspects of the draft legislation. Dr. Rossant, Dr. Baylis, Dr. Thérèse Leroux--director of our office of ethics--and I appeared in front of the committee this past fall. When the health minister released draft legislation in May 2001, Dr. Baylis participated in their press conference, again stressing that CIHR's draft guidelines and the draft legislation were consistent with respect to embryo research.

    We have sought and obtained support from provincial funding agencies and national voluntary health organizations. Many have agreed to adhere to CIHR's guidelines; others are in the process of seeking support from their boards.

    In closing, Madam Chair, I would like to emphasize several points.

    First, the guidelines apply only to the research that we fund. Only legislation can and will govern research in the private sector.

    Second, it is important for the standing committee to appreciate that the CIHR guidelines do not introduce any major changes in the current scope of permissible research involving human embryos, as outlined in the tri-council policy statement that I previously quoted. What these guidelines do in fact is further restrict what is permissible under that policy statement by clarifying specific requirements with respect to informed consent and mechanisms to minimize the risk of coercion; adding a new stem cell oversight committee; requiring the creation of an open stem cell registry; and prohibiting the creation of certain animal-human hybrids and chimeras.

    Third, I wish to reassure members of the committee that given the time required to set up an oversight committee and to prepare research ethics boards of universities, and given our regular funding cycles, no new CIHR funds for human embryonic stem cell research will flow to researchers until April 2003.

    Fourth, Canada, like other industrialized countries, has taken steps to address this very difficult and complex issue. We have very close alignment between both the legislative process and guidelines developed by the research, legal, and ethics community under the aegis of CIHR. Furthermore, the provinces and the majority of Canada's health charities have indicated they voluntarily support and will enforce these guidelines. Plus, we have close alignment between federal lawmakers; the scientific and ethics community; and federal, provincial, and voluntary sector funding agencies. Internationally, the guidelines are viewed as a responsible middle road that will allow important research to go forward within an ethical framework.

    Finally, I wish to emphasize that the CIHR guidelines support and enhance the parliamentary process by providing an interim solution that is consistent with the draft legislation on assisted human reproduction. The guidelines restrict research on human embryos, fill gaps in the tri-council policy statement, and allow promising research to go forward, but only within a tight, ethical, and regulatory framework.

    Madam Chair, I am here at the request of the committee, and I'd be happy to try to answer any questions you might have.

    Thank you.

¹  (1545)  

    The Chair: Thank you, Dr. Bernstein.

    We'll follow the usual pattern. We'll begin with Mr. Merrifield.

    Mr. Rob Merrifield (Yellowhead, Canadian Alliance): I want to thank you for coming and I want to thank the committee for allowing you to come. We have some very important questions to ask, and there are important questions Canadians want to ask, which we're asking on their behalf.

    I understand your frustration as a scientist. The 1993 royal commission failed to come up with anything with regard to legislation on these important issues and matters of scientific research. I understand Bill C-47 died on the Order Paper, to the frustration of most parliamentarians. Here we are waiting, in the eleventh hour of new legislation coming forward.

    I can understand, in your zeal to move forward with your research, you would want to come up with some guidelines. But I'm absolutely amazed that you would decide to take into your own hands an issue we've wrestled with as a nation for the last decade; that you've come up with guidelines that may or may not reflect the will of Canadians; and that you have circumvented the parliamentary process in doing so.

    I guess my first question is, was the Minister of Health aware of your decision to make your guidelines and bring them out on March 4?

    Dr. Alan Bernstein: I met with the minister on January 30, mostly to have an informal discussion about CIHR. She was a new minister, as you know. At that time, as a courtesy, I told her that council had approved a set of guidelines two weeks earlier, and we'd be making them public in the near future.

    Mr. Rob Merrifield: So she was aware.

    Dr. Alan Bernstein: She was aware. I didn't seek her approval. As a courtesy, I told her we'd be doing that.

¹  (1550)  

    Mr. Rob Merrifield: But she certainly knew what guidelines you'd be coming out with.

    Dr. Alan Bernstein: I outlined, in broad terms, the content of the guidelines. I told her they were largely consistent with the draft legislation, although there were some differences.

    Our guidelines are actually a bit more restrictive in some ways than the draft legislation, with regard to creating hybrids and chimeras between animal and human cells. But other than that, they're very much aligned.

    Mr. Rob Merrifield: It's really interesting that you would come out reflecting the draft legislation. In December, after nine months of intense work, listening to witnesses such as yourself and witnesses from across Canada and around the world, this committee came up with majority and minority reports on our findings of ways we could make that piece of legislation better for Canadians. It's interesting that you're sitting there telling me you would not follow those guidelines but would go back to an original draft. Why would you do that?

    Dr. Alan Bernstein: Let me reiterate an important point, going back to your opening comments, Mr. Merrifield. Before October 2000 we identified a regulatory void. In Canada there was only the document Tri-Council Policy Statement:Ethical Conduct for Research Involving Humans, which allowed research to go forward on human embryos, with informed consent--pretty well, period. I was concerned and the council was concerned.

    In October, we started a process of this committee, which I walked you through. The intent of that committee was to put in place guidelines for if and when legislation of whatever kind was put in. I want to stress to the committee that rather than us opening the door to allow stem cell research to go forward on human embryos--that door had been opened with the Tri-Council Policy Statement--we were doing almost the opposite. We were putting further restrictions on the nature of research Canadian researchers could do on human embryos, if they wanted to make stem cells. We viewed it as an interim solution. We identified a gap and were awaiting legislation.

    I also want to point out that the research community did not feel a sense of haste or frustration. These are very complex issues--understand that completely. I felt it was our responsibility, consistent with the act, to bring in guidelines for research we fund within the only guidelines in the land at the moment, which is the Tri-Council Policy Statement.

    I hope I've clarified it.

    Mr. Rob Merrifield: You've clarified it, but you suggested you're not frustrated. I can tell you that as a parliamentarian, I am frustrated. I'm absolutely appalled that you feel you can make a decision like this. It's the most important ethical decision we have to make, as legislators. You've pulled that away from the legislation and made a decision at the eleventh hour, prior to legislation coming forward and through the House.

    We represent, as parliamentarians, our respective constituents. We feel the weight of their burden, as we are lawmakers. It was really interesting when you suggested in your opening remarks that you worked closely with the federal government in making laws. We are those lawmakers. I don't feel you've worked closely with us. You have circumvented the process and circumvented the will of Canadians to have a voice on this.

    You say the guidelines and the moneys will not flow until next year. But do you realize that Genome Canada have adopted your guidelines and started funding for that research last week?

    Dr. Alan Bernstein: Could I jump in here about that last comment? I think the Genome Canada example you've just raised is a perfect example of why our guidelines are so important. Let me explain.

    In the absence of our guidelines, the only guidelines in place at the moment are those in the Tri-Council Policy Statement. That statement allows research on human embryos, provided there's informed consent. So the only guidelines that exist at the moment would have allowed that research to go forward today.

    Because of our guidelines, it cannot go forward. Our stem cell oversight committee is not in place. They have not had a chance to look at that application and approve it or not. In the meantime, we're waiting for legislation.

    So we were not--and I want to stress this--making policy. The policy of allowing research on human embryos was put out there two years before the creation of CIHR, with the Tri-Council Policy Statement. We are saying that within the existing policies in Canada, there are guidelines for CIHR- and now Genome Canada-funded research.

    So I view the Genome Canada incident as a perfect example of why these guidelines are so important. They are now going to restrict research that otherwise could have gone forward, as of the day it was announced.

    Mr. Rob Merrifield: You don't have to convince me how important the guidelines were. You have to convince me that you didn't circumvent the political process in getting the guidelines implemented. It's up to Parliament, to the lawmakers of this country, to speak on behalf of Canadians on ethical issues such as this, and you have circumvented this process in these guidelines.

    Now when you were here last fall and brought up the issue of your committee, a regulatory body within CIHR, you were asked what was most important, that it be independent, that it be technically competent, or that it be accountable? Your response was very interesting. You said none of these was the most important thing. Your exact words were, “My answer might surprise you; I would put public trust at the top”.

    Dr. Alan Bernstein: Absolutely.

    Mr. Rob Merrifield: So you would put public trust at the top, but you've circumvented it. You went on to explain that the CIHR cannot be the regulatory body because it is the promoter, and the regulatory function should not be encompassed in the same body; yet this is exactly what you're bringing forward.

    I'm absolutely appalled on behalf of Canadians. I think they're appalled that they have not been able to speak on this important issue. You've put a regulatory body in place that has not garnered the trust of Canadians. Either the scientists have taken control of this into their own hands or the minister is using you as a way to get this issue into the public arena through the back door.

    I would suggest that the latter might be the situation, but perhaps you could reflect on it and tell me which of those two it is.

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    Dr. Alan Bernstein: Well, it certainly isn't the latter. I stand by what I said earlier, of course, that public trust is important.

    I view the setting up of the oversight committee and its guidelines as a necessary interim step until legislation is brought into place. The guidelines also point out exactly what you said, Mr. Merrifield: we are both a funder and now, if you will, an adjudicator--and in a sense this is a conflict of interest, but it is an interim step.

    The committee recommended, and the council approved, going to the next step, which is to have Health Canada set up a more permanent body. Whatever the regulations are under the legislation that will be brought in, they would obviously supercede the stem cell oversight committee recommended in our guidelines.

    These are interim steps to fill the void left by the absence of any legislation or regulations.

    Mr. Rob Merrifield: Why couldn't you have waited for the legislation, which is only a month and a half away?

    Dr. Alan Bernstein: I'll go back to the Genome Canada example you just gave. There are researchers in this country--

    Mr. Rob Merrifield: Why couldn't Genome Canada have waited until the legislation was in place?

    Dr. Alan Bernstein: It would have been hard. On what basis should they have waited? The Tri-Council Policy Statement allows the research to go forward.

    Mr. Rob Merrifield: But you're waiting until 2003, under your own admission.

    Dr. Alan Bernstein: That's because of the timelines. There are many Canadians--let's not lose sight of this--who are pushing very hard for this sort of research to go forward, people with diabetes, spinal cord injuries, multiple sclerosis, heart disease, etc. There are multiple perspectives here, which is why it is such a tough issue.

    Mr. Rob Merrifield: Okay. I'll wait for another round

    The Chair: Thank you, Mr. Merrifield.

    Madame Picard.

[Translation]

    Ms. Pauline Picard (Drummond, BQ): Thank you, Madam Chair.

    Mr. Bernstein, before developing these guidelines, had you already begun research on embryonic stem cells? Had you already begun research? In the last two years, since the institutes were created, has any research been carried out on embryonic stem cells?

º  (1600)  

[English]

    Dr. Alan Bernstein: We are currently funding three grants that involve research with human embryonic stem cell lines that were derived in the United States and imported here to Canada. This funding was granted before the CIHR guidelines were brought in and this work is going forward. With the guidelines, now those individuals will have to come in front of the oversight committee to have their further research reviewed.

[Translation]

    Ms. Pauline Picard: What is the value of these guidelines? What more do they give you? Having set these guidelines, do you have a clear conscience about your right to finance this research? What is the real value of these guidelines? Are they legal or ethical guidelines, or simply stated ideals giving you the right to finance research you were already doing before you had them?

[English]

    Dr. Alan Bernstein: Before the guidelines were brought, in the only guidelines we could impose, the only framework we had, was the Tri-Council Policy Statement. Now we will, in addition, impose the CIHR stem cell guidelines, and of course legislation, when that is brought in.

    As for the guidelines, we have a responsibility given to us by Parliament to ensure that any research we fund is done within an open and transparent, ethical framework. These guidelines, operating within the Tri-Council Policy Statement, further restrict the research that can be done. The stem cell oversight committee, in the absence of a legislative process, will have the authority to say yes or no to any proposed research in the country and to fund it on the basis of whether or not it adheres to CIHR stem cell guidelines.

    I'm repeating myself, but this is, in my judgment, a necessary step. It fills a void in Canada while we await legislation.

[Translation]

    Ms. Pauline Picard: Mr. Bernstein, you knew that the committee was carrying out a review. A draft bill was tabled in this committee. You knew that we had been working on it for quite a while. You appeared before the committee yourself. You gave us your opinions. Why did you act without asking the committee's advice?

    You also knew what this committee thought about research on embryonic stem cells. You knew that we are rather critical of it, it raises ethical problems. In fact, it raises several problems. It is also a fact that the general public is not in favour of supporting embryonic stem cell research now that we know that research on adult stem cells does not create as many problems and could be just as effective.

    Why did you act without consulting the Committee?

[English]

    Dr. Alan Bernstein: Let me say two things in response. One, the whole process that CIHR engaged in was open and transparent. I was here in front of the committee, as was the chair of our working group. We made very clear to the committee what we were doing, what our broad timelines were, and that we were going forward. Again, I felt it was very important for us to fill a gap and have a framework in place that would ensure that any research with stem cells would be done ethically.

    As well, I'd like to talk briefly about the issue of adult versus fetal stem cells that you mentioned. I know the committee heard from several witnesses that adult stem cells might show great promise. Of course, our working group considered this. There was a great deal of skepticism within the research community about the early claims of adult stem cells being almost as good as embryonic ones.

    I brought a few copies of things I'd be happy to leave with the committee, Madam Chair. Recent reports in Nature and Nature Medicine, one from a Toronto group, and a lay write-up in The Economist two weeks ago clearly cast some doubt on the value of adult stem cells and their initial promise. This is still a very complicated area, and nothing is black and white, but it's clear that, at the moment, embryonic stem cells hold the greatest promise as curatives for the kinds of diseases we've been talking about.

    The Chair: Thank you, Madame Picard.

    Dr. Alcock.

    Mr. Reg Alcock (Winnipeg South, Lib.): You have to stop calling me “Doctor” Alcock; it destroys my country image.

    Let me step back a bit from this. In point five of your remarks, Dr. Bernstein, you say many members of Parliament are familiar with the activities of CIHR and have shown their support for CIHR decisions. I would count myself among that group. I've been involved in monitoring and watching and meeting with you and others about the creation of the foundation and the work you're doing, and I think it's very important work.

    I would also separate myself from Mr. Merrifield and some of the concerns he and others have raised around the table in this particular debate about embryonic stem cells and related issues. But at the same time, I feel as aggrieved and as disappointed in you and the CIHR as he does.

    I used the statement once that dealing in areas of social policy is like changing the tires on a moving car. It's true that society has to function and move ahead. Things have to happen because we live in a real world where we have to respond to things. But rarely in my parliamentary experience has a committee struggled with an issue as multifaceted as this one, which brings to the table some of the most difficult and thorny issues Canadians ever have to deal with, and come to a consensus. This consensus--that just because a thing can be done doesn't mean it must be done, and on the need to maintain a relationship between scientific progress and the collective consensus within a society--was strongly felt at the time.

    Am I personally as aggrieved by the specifics in your guidelines? No, but I am deeply disappointed in you and the council for pre-empting the legislative process. I believe this is nothing more than an attempt to end run the process the government is currently engaged in and I'm deeply disappointed that you did it. You could have waited a few more months; you've already waited a long time for this and you could have waited a little longer. But I personally believe there is another agenda here that absolutely astounds me.

    Let me ask you a question. I've been told--and I don't know whether it's true because I didn't phone to find out--that there were two staff members from the Department of Health who had either been seconded to or had been working with CIHR on the drafting of these guidelines. Is this true?

º  (1605)  

    Dr. Alan Bernstein: In response to your question, two observers from Health Canada have been a part of our working group from the start, back in October 2000.

    Could I also respond to your earlier comment?

    Mr. Reg Alcock: Sure.

    Dr. Alan Bernstein: Of course, I'm disappointed to hear your remarks, Mr. Alcock. Let me again stress to the committee that we were not setting policy. I absolutely do not believe that it is our role to set public policy. Setting public policy would be to assert that it is okay to do research on human embryos, for example.

    The mandate I gave to the working group, and the one that CIHR was working within, started with existing public policy in this country that allows research on human embryos. Given this, we need some specific rules on stem cell research. If we had come out and said for the first time that it is okay to do research on human embryos, then we would have been setting public policy and it would have been inappropriate. That is, absolutely, the role of this committee and Parliament.

    I know I'm repeating myself, but I think it bears repeating. The Genome Canada announcement of the other day is a good example. I was concerned that there are researchers in this country who are now funded, either by government agencies like Genome Canada or other sources, who want to do research on human embryo-derived stem cells. They are allowed to at the moment under the Tri-Council Policy Statement. There was nothing stopping them from going forward. Now there is; CIHR guidelines will not allow this work to go forward until an oversight committee or regulations under legislation are in place.

    I absolutely agree with everything you have said--other than the conclusion you've drawn. I don't believe we were setting public policy. We were putting guidelines in place for research that we fund.

    Mr. Reg Alcock: But you didn't pose it as a choice. You said you had no choice, you had to do something; but you had other options. You could have simply said that, given that the government has shown its intention to come forward with legislation within the next few months, we will simply put this on hold until the government's intentions are revealed. This was another choice you could have made.

    As for Genome Canada, we'll call it before the committee and deal with it separately. I have the same concerns with it.

    I want to come back to the issue of the two staff from the Department of Health. Were they involved in the drafting of the guidelines you released?

    Dr. Alan Bernstein: They were observers.

    Mr. Reg Alcock: Okay. Would these be the same staffers who will be drafting the legislation for the Department of Health, for the government?

    Dr. Alan Bernstein: I actually don't know.

    Mr. Reg Alcock: Well, I'm not one who likes to single out pubic servants. I think they deserve a certain amount of protection from parliamentarians, but I would ask you to put forward their names privately to the chair and we will make those inquiries within the ministry.

    Thank you very much.

º  (1610)  

    The Chair: Thank you, Dr. Alcock.

    Now we have Mr. Merrifield again.

    Mr. Rob Merrifield: I'd like to get back to this committee you say is ethical and worked long and hard on this. Before we get into the ethics of the committee, I would have to say that it was not representative when it was initially struck. It was made up of people with a built-in bias in favour of embryonic stem cell research, and it is not open and not transparent. Yet you're saying that these are the people who should make the ethical guidelines.

    I have a difficult time discerning exactly where and how those committee members came up with these ethical guidelines, especially when a draft piece of legislation was taken on its own without consideration of anything further from this standing committee. We brought out our report in December, which would have given your committee ample time prior to coming out with these guidelines in March. I'm absolutely astounded that this happened. My suspicion is that either the scientists are loose or the minister is engaged in some sort of plot.

    Let's go back to that point. When you visited the minister and told her you were going to come forward with this legislation, what did she say? Did she approve or not?

    Dr. Alan Bernstein: I didn't ask for her approval. It wouldn't have been appropriate. I told her there was a matter of--

    Mr. Rob Merrifield: It wouldn't have been appropriate?

    Dr. Alan Bernstein: Because we're an arm's-length agency, we report to Parliament directly through the minister. I'm not quite sure of the wording here, but it wouldn't have been appropriate for me to ask the minister for approval, or for her to give it or deny it.

    Mr. Rob Merrifield: If she disapproves of what you're doing, what do you suspect she would do?

    Dr. Alan Bernstein: It's a hypothetical question.

    Mr. Rob Merrifield: Exactly. Could you speculate for me?

    Dr. Alan Bernstein: No, not really.

    Mr. Rob Merrifield: It's taxpayer dollars you're dealing with, is it not?

    Dr. Alan Bernstein: CIHR reports directly to Parliament.

    Mr. Rob Merrifield: Through the minister.

    Dr. Alan Bernstein: Yes, through the minister. We're accountable to Parliament for what we do.

    Mr. Rob Merrifield: I think that explains what would happen if she didn't approve. That tells me an awful lot and I think it tells the committee an awful lot.

    It's really quite amazing. You used the phrase that there is a high ethical standard there. I'm really interested in what ethic you were using. Where do you draw that line, and why did you draw the line where you did on this piece of legislation?

    Dr. Alan Bernstein: On our guidelines?

    Mr. Rob Merrifield: Yes, on the guidelines, not legislation, although it acts the same.

    Dr. Alan Bernstein: The mandate to the working group was to operate within the Tri-Council Policy Statement to come up with guidelines. The working group on stem cells did not address the ethical issue of research involving human embryos. I think that's the role of Parliament.

    They were operating within the existing guidelines of the land, which is the Tri-Council Policy Statement. It dealt with issues around formed consent and around ethical review at a national level so that there's a harmonized process across Canada. It dealt with issues around animal-human hybrids and chimeras. It dealt with issues of the stem cell registry that would have to be opened so that people wouldn't be unnecessarily creating stem cell lines from new embryos. We would minimize the number of embryos that would have to be used.

    This was deliberate for exactly the reasons you're getting at, Mr. Merrifield. If that committee or if CIHR had engaged in an internal discussion about the ethics of research on human embryos.... That is obviously very important public policy. It is not for CIHR to decide that policy. It's for Canadians, through parliamentarians, to decide that.

    Mr. Rob Merrifield: Let me just get this straight. You're allowing it based on the Tri-Council?

    Dr. Alan Bernstein: Yes.

    Mr. Rob Merrifield: Then the Tri-Council's policy itself would circumvent Parliament. That's no excuse.

    Dr. Alan Bernstein: Tri-Council was brought in before CIHR was created. It had either the tacit or explicit blessing of Parliament, I don't know which. It's the existing guidelines under which all federal government-funded research operates in this country.

    Mr. Rob Merrifield: That's an interesting defence you have, but I don't think it cuts any ice. That's absolutely no excuse. A decision of this weight to move into this legislation, into this ground, is a decision that has to be made by Parliament, and Canadians must have an opportunity to speak on it.

º  (1615)  

    The Chair: Thank you, Mr. Merrifield.

    Madame Sgro.

    Ms. Judy Sgro (York West, Lib.): Thank you very much.

    Dr. Bernstein, I'm not going to get into any of the issues and the comments that have already been made. I think it's just expressing our own frustration with trying to deal with a difficult issue.

    How do the guidelines you've put forward differ from some of the issues in our draft legislation, or do they differ?

    Dr. Alan Bernstein: They're very consistent. That's the word I'd like to use. I think the one major difference I read, not with the legislation but with this committee's report, is that this committee has a recommendation, in your report from December, that research involving embryonic stem cells only be used if there's no better source. I'm paraphrasing the wording, but that's roughly the wording. That is not in our guidelines.

    I absolutely understand the motivation behind saying that. I think the CIHR and the committee felt it was for parliamentarians to decide on that issue. You were reflecting the hope that adult stem cells held great promise. I think there is now great skepticism in the scientific community. I will leave the papers for you to look at. I can read from some of it to give you a quote.

    In addition, there was a logical issue around the way the recommendation goes in terms of how one can demonstrate there is no better source. Having said that, I think our guidelines are entirely consistent with the draft legislation.

    Ms. Judy Sgro: In some ways I'm glad there are guidelines in place today. Somebody put them in place.

    Given the fact that the government has had such difficulty dealing with this issue, at the back of your mind.... You don't have to answer this question, but I recognize your seeing at some point that there was a regulatory void. I'm going to go backwards. When did you recognize there was a regulatory void happening, and why was it in October 2000 that you put the working group together?

    Dr. Alan Bernstein: CIHR was created on June 7, 2000. We're coming up to our second birthday. It's a measure of how high a priority it was for CIHR that the working group was struck within its first four or five months. I recognized the great promise of stem cells to cure very serious diseases, on the one hand. On the other hand, there are very real ethical issues raised by research involving human embryos.

    At that time, there was no draft legislation. There was no standing committee dealing with draft legislation. We felt it was very important to start a process back in October 2000. I think the committee we struck has informed the parliamentary process.

    I didn't say this in my opening remarks, but I think Canada actually should take great pride in what's going on here. We have a multi-tier process in this country that is very much aligned--it's not perfectly aligned, but it is very much aligned--between the scientific community, the ethics community, and many parliamentarians. We're not going to get unanimity here. This is a very complex issue. There are very few countries in the world that I think have as many people around the table as we do, roughly on the same kinds of pages. I think this is unique in the world. Look at our neighbours to the south, look at the U.K. situation and other countries.

    I think this has been a very positive process where there has been mutual informing between the scientific community, who appeared in front of this committee, and parliamentarians. I have been very heartened by this process.

    Ms. Judy Sgro: When you did your deputation before the committee, did you mention to us at that time that there also was a working group?

    Dr. Alan Bernstein: Yes. In fact, Dr. Rossant, who appeared here, appeared as our chair of the working group. I discussed at length with the committee where it was at and the process going forward with the working group's recommendations to council.

    Ms. Judy Sgro: Is part of the reason you brought forward those guidelines because you felt the federal government may never get around to dealing with this issue in the next year or two?

    Dr. Alan Bernstein: No, actually.

    Ms. Judy Sgro: I don't know if that's a fair question.

    Dr. Alan Bernstein: If our guidelines had been at complete variance with the draft legislation, to be honest with you, I would have had great difficulty releasing the guidelines when we did. Given that there was a void, and given that the legislation and the guidelines were very much consistent, I felt it would be irresponsible for us not to go ahead--because there was a void; there was a gap. The research community was waiting for these guidelines. Everybody in the country knows this working group had been doing their work, had completed their report. I think if we had said we were going to wait, people would have said, “Good, go ahead. There's a Tri-Council policy statement.”

    Ms. Judy Sgro: Thank you, Madam Chair.

º  (1620)  

    The Chair: Dr. Dromisky.

    Mr. Stan Dromisky (Thunder Bay--Atikokan, Lib.): Thank you very much, Madam Chairperson.

    I'd like to change the direction of the inquiry that's going on right now and get down to the stem cell research. We have basically two tracks: adult stem cell research and embryonic stem cell research. Can you give us some indication of what types of grants have been given? Have grants been given to both streams--

    Dr. Alan Bernstein: Yes.

     Mr. Stan Dromisky: --or just one in particular? Can you give us some idea of who's doing research in both?

    Dr. Alan Bernstein: I can give you the numbers today. We are funding 46 individuals who are doing research on animal embryonic or adult stem cells. We are funding 11 projects in the country on adult human stem cells. We are funding three proposals on using human embryonic stem cell lines derived in the U.S.

    Mr. Stan Dromisky: Are those new?

    Dr. Alan Bernstein: Within the last two or three years.

    Let me stress that none of those three involve deriving new stem cells from primary human embryos. These all involve taking cell lines that have been generated in the United States and using them here in Canada.

    Mr. Stan Dromisky: Do you have any idea what their goals might be in any of these research projects?

    Dr. Alan Bernstein: Yes. One case I know is to understand how the genes that control hemoglobin production are regulated in humans. Hemoglobin is the molecule that makes our red cells red and carries oxygen to tissue, as Dr. Castonguay will know. I think another case is to start doing early work on trying to convince human stem cells to start making insulin-producing eyelet cells for the treatment of type 1 diabetes.

    Mr. Stan Dromisky: I realize that you have new guidelines specifically establishing criteria for the use of aborted human fetal tissue. Is that true?

    Dr. Alan Bernstein: Again, that falls within the Tri-Council and the guidelines. If you want to derive stem cells, here are the rules you have to adhere to in addition to the Tri-Council statement.

    Mr. Stan Dromisky: Oh, I see. That's not a separate set of rules. This is encompassed.

    Dr. Alan Bernstein: Yes.

    Mr. Stan Dromisky: Okay. Thank you very much.

    The Chair: Mr. Anderson.

    Mr. David Anderson (Cypress Hills--Grasslands, Canadian Alliance): I'm not a regular on this committee, but I have followed this discussion from a bit of a distance. As I was listening to you, I was thinking it's a good thing I'm not doing jury duty here because I think you've convicted yourself.

    There have been ten years of talk going on in this without the regulations, other than the ones you have spoken of. You have a void for a few months here, and you've obviously moved in to fill that. I was surprised when I heard there were only three projects. I had assumed there would be quite a few more. I can't do anything but conclude that you've done this deliberately to try to bypass Parliament and this committee, from what I've heard today.

    Dr. Alan Bernstein: Not at all, and I mean that very sincerely. We did it because we have a mandate from Parliament to be proactive, to identify emerging health opportunities, to do that research in an ethical way.

    The whole area of stem cells is a very hot area. It's a very exciting area of research that holds tremendous promise for curing very serious diseases. I think we've lost sight of that in this discussion today. That's why we were created in the first place. But it has to be done within a tight ethical framework, and I obviously accept that. That's a sine qua non. I felt I had a direct mandate from Parliament to make sure the research went forward, on the one hand, but to make sure it was done within guidelines until there's legislation. That's what we have done.

º  (1625)  

    Mr. David Anderson: You say you're not frustrated. I can't imagine being the head of your research institute and spending two years waiting for some guidelines and direction from someone, and not getting them. Is that not a frustration for you?

    Dr. Alan Bernstein: I've been too busy with so many things to be frustrated about any one thing, to be honest with you.

     Definitely, my preference would be that there be legislation in place. There are two reasons. One is that it would be at arm's length from CIHR, which is appropriate--a point that Mr. Merrifield made earlier. Second, it would cover not just CIHR-funded research, but all research in this country that involves human embryos and stem cells.

    Mr. David Anderson: You had observers from Health Canada as part of your process. I presume they were in agreement with what you were doing as you were doing it?

    Dr. Alan Bernstein: I can't tell you that, actually. They were observers. The draft legislation is very much consistent with our guidelines, so I assume they were in agreement, but I can't answer for them.

    Mr. David Anderson: So they were fully aware of it, and the minister would have been aware of all that as well?

    Dr. Alan Bernstein: Yes.

    The Chair: Thank you, Mr. Anderson.

    Mr. Szabo.

    Mr. Paul Szabo (Mississauga South, Lib.): Thank you, Madam Chair, and welcome, Dr. Bernstein. It's good to see you again.

    On January 27, 2001, you were quoted in the Globe and Mail as saying:

It is not the role of scientists to determine the ethical limits to research or the application of genetic knowledge to the delivery of public health. That is the role of legislatures and the public. The job of scientists, Dr. Bernstein said, is to be canaries in the coal mine, saying: “Hey, there's an issue coming up here, and we should have a full discussion.”

    I believe what has happened is precisely the reverse. In fact, your statement says one thing, but I think what the members are saying to you is that what CIHR has done, and what you, as the president of CIHR, have done has totally flipped this thing in reverse. In fact, the legislatures have never opined on policy with regard to the ethical limits of research.

    That's one point.

    Second, you penned an article for The Hill Times on March 18, 2002, in which you said that, in part, your guidelines were consistent with the reports of the Standing Committee on Health. That is not the case. I think you already have indicated that one of them was that there should be no embryonic stem cell research unless it is demonstrated that there are no other sources of stem cells that can achieve the same research objectives.

    In addition, you said there should be a separate regulatory body--not your body--separate and apart from Health Canada and the research community, to ensure that this very sensitive area would be helped.

    I could go down the list, but I don't have the time.

    But there are clear differences, and I'm advised that you told the minister that the report of the health committee had rendered your guidelines inoperable. So I think what you told the health minister, what you've told the public through your article in The Hill Times, and what you've told us here are two different stories. I'm sorry, but they're different.

    For the first time in all the time we've talked about this subject you started off by referring to pluripotent stem cells, both embryonic and adult. It's in your written statement. This is the first time you have ever acknowledged that adult stem cells are pluripotent. I find it really fascinating; it is a change. In fact, your statements in the past as well as some of the things you've said here discrediting adult stem cells have led me to believe that CIHR has a deep and fundamental bias against adult stem cells, and it keeps coming out.

    Originally, when you announced these guidelines on March 4, the press asked you when we were going to see research funds flow. You said it would take six to eight weeks to get the oversight committee set up before we could start getting the money out. Today, you come to us and say we're not going to see any money flow until April 2003. That's another very significant change, in fact a difference of one year, between what you said on March 4, 2002, and what you're saying today.

    We also have this...you're referring, I'm sure, to the two research studies that showed that adult stem cells had fused--the embryos had a problem and there was one extra chromosome. The people who provided that information have subsequently reported that the information those reports were based on was incorrect, that there were both embryonic and adult stems in the Petri dish, and that the conclusion that there was a problem with adult stem cells was actually incorrect. Yet you're going to present to us that there are even more problems with adult stem cells. I would have thought you would have known.

    You said you had to step in because there was no policy. Well, you're absolutely right, there is no policy. Policy is made by governments. The Tri-Council Policy Statement is not a result of any legislative process, and you tried to imply that somehow; it was implied or implicit that it was policy. It is not policy. It happens to be the research community that said here's what we're going to do. The fact is, we have an absence of regulation in Canada, and it's important.

    This leads me to this whole issue about urgency. If there is an urgency that we have policy in Canada, which means that it has to come through the Parliament of Canada, why is it that you participated with Health Canada all through this period of time, knowing that their coming forward with draft legislation would delay the process even another year or so? Why didn't you tell Health Canada that this is unacceptable, to have any draft legislation?

    We need to put legislation on the table so that Parliament can look at it. Did you express your concern about urgency, and did you tell Health Canada that? Did you insist that legislation must come forward on this, as you say, very important need for you to go forward?

º  (1630)  

    My last area that you can comment on is this. You have often said that Canada is a leading researcher in stem cell research but that less than 1% of the budget of CIHR is dedicated to stem cell research. When you come here and say there's great potential and it could be the greatest medical research discovery in the history of mankind, and yet less than 1% of your budget is dedicated to adult stem cell research, it indicates that there seems to be some reluctance to go after adult stem cell research. The health committee recommended clearly--a strong recommendation--that we do adult stem cell research before proceeding in some of these other more risky and ethically questionable areas.

    Finally--and I really want to know about this because I do have a report from the parliamentary research branch of the Library of Parliament--the existing embryos and gametes in fertility clinics, which everybody says we're going to use, are in the purview of a private company. Fertility clinics are for-profit companies. They have clients. Those clients are entitled to the protection of privacy and confidentiality. I look at your guidelines, and it says there:

Free and informed consent, provided voluntarily and with full disclosure of all information relevant to the consent;

Respect for privacy and confidentiality;

    The voluntariness is another one of no undue influence. It appears to me that the fertility clinics, in terms of offering the research alternative and explaining a few of these things, in fact are providing, as a doctor to a patient, undue influence in that they're asking for that research support rather than informing and leaving it to be a choice rather than an encouragement.

    My point is that it would appear, Dr. Bernstein, that any embryos and any gametes existing today in any fertility clinic, and until such date that your guidelines finally settle down and get out there and we get a relationship with these fertility clinics, would be inadmissible for funding under CIHR guidelines because you cannot even meet your own guidelines, i.e., having informed consent after giving all of the information and respecting all of the rules in your own guidelines, including saying that I waive my right to any future compensation for the proceeds or commercialization of stem cell lines or the disposition of those stem cell lines. All of that must be done, as you know, prior to or at the initial contact with the client, which the CIHR is not involved in. Unless the CIHR is in collusion with a fertility clinic and is going to pay the fertility clinic for those gametes, etc., it would appear to me, and the research report concurs, that there is no possibility that anything that has been done so far in fertility clinics would have available embryos or gametes for a funded research of CIHR.

    Given all that, why is it that you would come to this committee and make your general statements again and not acknowledge the fact that you were called back here for a specific reason, and that's because parliamentarians feel you have in fact pre-empted Parliament? You have not even given one iota of latitude in terms of acknowledging that the parliamentary process has been pre-empted, that it should have been respected, and that you didn't make any efforts to ensure that that did not happen.

    Dr. Alan Bernstein: You've raised a number of points. Let me try to address some of them.

    I think an important point you raised was a quote from me about scientists and public policy. I stand by that. I agree with what I said earlier. I don't think we are bringing in public policy. I think we are bringing in a framework within existing guidelines. It's up to this committee to recommend and up to Parliament to set public policy.

    If you actually look at our guidelines, what they talk about is the necessity for informed consent, no money can change hands, etc. It's within an existing framework of the Tri-Council Policy Statement, which predates CIHR actually. You'll also appreciate I think as parliamentarians that in areas of science that are rapidly changing, these ethical guidelines, however they're implemented, whether it's a tri-council or through Parliament, need to be a living process because science changes--stem cells weren't a possibility a few years ago. These are constant issues--very interesting public policy issues--that need to be addressed on an ongoing basis. What we did was bring in guidelines, not policy, within the existing framework.

    As to adult versus embryonic, I have never said this to the committee, but I'll share this with you now. My own research for the last 25 years has been on adult pluripotent stem cells. So rather than not acknowledging that there are adult cells that are pluripotent, I have built I think a stellar international career on just that fact, Mr. Szabo. I absolutely know that there are adult stems that are pluripotent. Indeed, I have made contributions that I'm very proud of in that area. Nature acknowledged that last week and cited two of my papers as classics in the 1980s, as some of the top two papers in the world in pluripotent stem cell research--all adult, all in mouse. So I'm very aware of that.

    I also am very aware that the current weight of scientific evidence is that adult cells do not have the proliferative or differentiative potential of embryonic stem cells for the kinds of therapeutic applications we're talking about, unfortunately. Now, that may change. It would be wonderful. I'd be the first to jump up and down. That would be fabulous if it did.

    The bulk of the research we're funding historically has been on either animal embryonic and adult or on human adult stem cell research for exactly those reasons as well.

    Did I jump up and down and insist that there be legislation? No. Again, that's not my role as a scientist and head of CIHR. That's for legislators to do. I did talk to Health Canada officials and to the minister about the challenges and opportunities of stem cell research. I gave a scientific briefing, if you will, to Minister Rock when he was Minister of Health.

    Other issues that you talked about--fertility clinics and informed consent. One of the recommendations of the committee that was adopted by CIHR council was to make absolutely sure there was no coercion of the couples, of the progenitors of these embryos, that no member of the clinical team could be on the research team. There has to be a complete separation of those two teams. Again, I don't think that's public policy. I think that's a guideline that hopefully will address at least one of the concerns you raised in your remarks.

    I know I'm not touching on all of them, because you've touched on a lot. But those are the main ones I would speak to at the moment.

º  (1635)  

    The Chair: Thank you, Mr. Szabo and Dr. Bernstein.

    I believe it's now the turn of Ms. Wasylycia-Leis.

    Ms. Judy Wasylycia-Leis (Winnipeg North Centre, NDP): Thank you, Madam Chairperson.

    I also want to thank Dr. Bernstein for appearing before our committee. I think there are a lot of issues we'd really love to chat with you about as a follow-up to Bill C-13, since we put a lot of work into that legislation, but I'll try to narrow my remarks to questions about the issue at hand: assisted reproductive technologies.

    The first comment I'd make is that I can't say I blame the Canadian Institutes of Health Research for developing guidelines, because we've all been operating in a legislative vacuum for a very long time. There's a frustration we have in terms of the lack of action over the many years since the royal commission and wishful thinking about what the world would be like if only we had acted when it was...[Editor's Note: Technical difficulty]

    The Chair: Can you move to the next microphone, and could you speak a little bit louder, please?

    Ms. Judy Wasylycia-Leis: I'll skip the whole introduction. I think Dr. Bernstein heard it.

    I guess my first question is really rhetorical. What would the situation be like today, in terms of this very difficult issue, if we had had some sort of legislative framework five or six years ago, when we as a Parliament grappled with the issue?

    My second question is about the whole structure and the reporting relationship. I might have missed this in the earlier discussion. If I recall our discussions around the bill, ultimately you report to the minister and then, through her, to Parliament. In a case like this, wouldn't you have grappled with this issue with the minister? She had been informed about the decision around guidelines and in fact had given her blessing.

    The third question has to do with my biggest concern around this whole area, which is the potential in this area of research for commercial benefit, commercialization of research. We raised it in terms of the governing council and trying to make sure there was something in place to prevent a possible conflict of interest and trying to temper for the objectives, which were around facilitating commercialization. I want to make sure what we're talking about today isn't trying to facilitate commercialization of research, and that we've put in place lots of checks and balances around conflict of interest.

    My fourth question has to do with the fact that I think what we're talking about is really a women's health issue. What consultation occurred between people who made the decision around the guidelines and the Women's Health Research Institute, established as one of the institutes under the CIHR?

º  (1640)  

    Dr. Alan Bernstein: Let me start with your first point about the agencies. I did talk about it a bit before you came in.

    CIHR is an agency. As such, my understanding is that I report to Parliament through the minister. As a courtesy, I did inform Minister McLellan that council had approved these guidelines on January 16 and that we would be making them public shortly. I did not ask for her approval, nor did she give it, but as a courtesy I informed her of it. That's number one.

    In terms of dollars, I agree with you. The working group shared that concern, and therefore one of the recommendations of the working group--and it's now part of the guidelines--is that there be an open stem cell registry. If a researcher generates a new stem cell line with CIHR funds, that has to be out there and it has to be available and free to the research community to make use of, and accessible on the web so that we'd know about it. It was exactly for that kind of reason that the recommendation was there and the council agreed to it. I think that also deals with conflict of interest.

    Ms. Judy Wasylycia-Leis: A little bit. Well, I guess the question on that is really with the governing council itself, in terms of having a system in place to make sure that people making decisions aren't in a conflict of interest position around this area of research.

    Dr. Alan Bernstein: On this area of research, I'm pretty sure there wasn't. Certainly on issues where there is a real or perceived conflict of interest, governing council members always declare and either leave the room or don't participate in the discussion or the voting. In my judgment, they have acted very ethically on this.

    In terms of women's health issues, as you said, we do have an Institute of Gender and Health, and it's led by Miriam Stewart from the University of Alberta. Dr. Stewart is a very highly regarded social scientist and researcher on women's health issues.

    We did not ask the scientific directors, individually or collectively, for their approval of these guidelines. That's the proper role of council. I can't speak for Dr. Stewart specifically on her views on these issues. I can say that she has not spoken out against them, but I can't say whether she's for or against them. We didn't ask the scientific directors, nor did she speak out on them.

    Ms. Judy Wasylycia-Leis: Thank you.

    Madam Chair, I'd love to ask more questions, but I'm due at another committee in five minutes.

    The Chair: Thank you, Ms. Wasylycia-Leis.

    Dr. Castonguay.

[Translation]

    Mr. Jeannot Castonguay (Madawaska--Restigouche, Lib.): Thank you, Madam Chair. Thank you for coming.

    I am looking at your document. Looking at sections 11, 12, 13 and 14, it would seem that, in October 2000, you set up a working group to develop guidelines and that the process has continued. You came up with a document that was ready at the beginning of the year, but you did not do this to circumvent Parliament. The document was simply ready and you made it public. Is that right? I know that some of my colleagues do not see it this way, but for my part, this is how I tend to see it and I want to know if I'm right. That is my first question.

    Second, on October 31, when you appeared before the Committee, you recognized the commitment made by the Canadian Institutes on Health Research regarding research on adult stem cells alone. Other witnesses, including Dr. Worton, told us how important research on embryonic stem cells would be. Could you explain today to the Committee why it is important to continue research on both types of cells simultaneously?

º  (1645)  

[English]

    Dr. Alan Bernstein: Yes, I'd be delighted to. This is an area that's close to my scientific heart.

    First of all, adult stem cells are extremely important for clinical treatment today. When one receives a bone marrow transplant for certain forms of anemia or cancer, it's really the blood-forming stem cells that are doing the work, as opposed to a red cell transfusion, for example. So it's really the stem cells that are important.

    Understanding how stem cells work and what are the growth factors necessary to keep them alive and to encourage them to proliferate, divide, and give rise to new daughter cells is very important science. It has been part of my own research in the last 20 years.

    Similarly, understanding how embryonic stem cells make their decisions about whether they're going to give rise to more stem cells or are going to differentiate into neurons, blood cells, cardiac muscle cells, skeletal muscle cells, etc., is very important science for understanding how our body grows and develops, and also, hopefully, for being able to manipulate either adult or embryonic stem cells to give rise to the cells we're interested in.

    We also want to understand any differences. Why is it that embryonic stem cells are not the same as adult? An embryonic stem cell can give rise to a human being, of course; we all know that. As far as we know, an adult stem cell cannot. But it has the same genes. So what has happened in the genome to lose that plasticity or developmental capability?

    Those are very interesting scientific questions and very important from a therapeutic point of view in terms of trying to convince adult stem cells to really do what we all hope they can do one day, which is to treat very serious diseases. So these are very important areas of research for treating disease. Again, as I said earlier, Canada has a proud track record of research in this area going back 40 years.

[Translation]

    Mr. Jeannot Castonguay: Am I right to understand that these two types of cells behave differently, and that this explains why it is important to do research on both typoes, so that we have more knowledge and can eventually use adult stem cells more readily later on, without as many ethical problems? That is my first question.

    Second, as I understand it, you created your committee in October and you did not consciously plan the time when your guidelines would be published.

[English]

    The Chair: I have a point of order. I'm sorry. Mr. Anderson.

    Mr. David Anderson: I'd just like to ask whether the questions are relevant to the discussion we're having today, which is supposed to be on the stem cell research guidelines rather than on the stem cells and their scientific use.

    The Chair: Dr. Castonguay is a medical doctor, and he can ask what he's interested in. But I will tell him that he has 20 seconds left.

[Translation]

    Mr. Jeannot Castonguay: Right.

[English]

    Dr. Alan Bernstein: In my judgment, this conversation is very relevant to the broader topic today, because in the fall this committee, I think correctly, focused very much on the issue of adult versus embryonic, which is a very important area. It's an extremely active area of research and an area of changing science at the moment. The weight of the scientific evidence at the moment is that adult stem cells do not have the developmental plasticity we hoped they would have and that earlier reports claimed they have.

    I think it's important for this committee to keep abreast of that changing science. I think one of the concerns in this broad area of public policy is how do lawmakers keep up to date with changing areas of science so as to inform public policy-making.

    My own view is that in your wisdom you have created agencies such as CIHR. We are, if you will, your consulting body, and I hope you will feel free to use us, as you did in the fall when you asked me, Dr. Rossant, and others to appear in front of you to give testimony about the potential of stem cells, embryonic versus adult--all these sorts of scientific issues.

    These are complex, changing issues. Science is not cut and dried. Much as I would like to say it is, it's not. It changes with time. Early reports are not always confirmed. You can't believe the last person you heard. You have to wait until the weight of evidence is in.

    I can, I hope, have the credibility not just in the stem cell area but with the Canadian research community to be able to work with this committee and others in Parliament to inform you about where science is going, what are the issues, what are the next issues, and what are the opportunities for curing diseases and promoting health.

º  (1650)  

    The Chair: Thank you, Dr. Castonguay.

    Madame Picard.

[Translation]

    Ms. Pauline Picard: Thank you, Madam Chair. I have a short question.

    Mr. Bernstein, what will happen when the Minister introduces her bill in May, it does not agree with your guidelines? What will happen?

[English]

    Dr. Alan Bernstein: That's very easy. Legislation will obviously supercede any guidelines. If the legislation is different or the same, it will supercede our guidelines. That's clear.

    The Chair: Thank you, Madame Picard.

    Madame Scherrer.

[Translation]

    Ms. Hélène Scherrer (Louis-Hébert, Lib.): Thank you, Madam Chair.

    As a member of the Standing Committee, I can tell you that those who have heard most of the presentations made before the Committee have heard very relevant scientific presentations from people, who gave us both the positive and negative aspects, as well as added value asoects, relative to as opposed to adult stem cells research.

    On the other hand, and I believe that this goes for all members, what has already influenced our decision to support one type of research or the other are not the typically scientific aspects, but rather the ethical, social, economic and emotional considerations brought up by the witnesses. These probably influenced the opinions of all members of this committee, and this explains why the bill is what it is now. It is because we heard what these people came to tell us about what advanced research on stem cells would mean for them.

    You say that you have consulted Canadians to develop your guidelines. Were these Canadian scientists who brought controllable verifiable facts to your attention, or were your guidelines based on testimony from people who told you about the daily, ethical, emotional and religious implications of this area of stem cell research?

º  (1655)  

[English]

    Dr. Alan Bernstein: C'est une bonne question. The working group did not go across Canada and consult with the lay public, with “ordinary Canadians”. I think that would be what one does when you set public policy. What the working group did, within the existing Tri-Council Policy Statement, was to develop further guidelines involving stem cell research.

    I can tell you that in the feedback we received when the draft working paper went public, after we issued our guidelines, many Canadians, many health charities, have spoken out very positively. Not everyone, but many Canadians have spoken out very positively. Many health charities were at the national press announcement when we announced these guidelines. The Canadian Cancer Society, which represents hundreds of thousands of Canadians, the Parkinson's disease group, multiple sclerosis groups, ALS, juvenile diabetes, and many other charities have spoken out very loudly that they support these guidelines.

    These are anecdotes, but they're important. I had many touching e-mails from individual Canadians, young people who had diseases, saying they applauded the guidelines and wanted to know when they could have access to treatment.

    That's why these are tough issues. There are two sides to this, and we shouldn't lose sight of the great potential of stem cells to treat disease. It's just potential at the moment, but there's promise there.

[Translation]

    Ms. Hélène Scherrer: Thank you.

[English]

    The Chair: Thank you.

    I still have Mr. Merrifield and Mr. Szabo. I wonder if they'd let me have a turn. You'll still have time.

    An hon. member: We're going to 5:30, aren't we?

    The Chair: Yes.

    Dr. Bernstein, you talked about your consultation in your first presentation. I think it was 27 groups and 89 individuals. I'm glad Madame Scherrer brought it up, because I'm assuming you mean you circulated material to people and 89 individuals decided to write back. Is that correct?

    Dr. Alan Bernstein: That's correct.

    The Chair: You'll note, of course, a great difference with our process. We met face to face for long hours with individuals, including yourself. I believe you came to us twice and helped us out.

    You say the CIHR reports to Parliament and you would like to have a good working relationship with Parliament. I believe we fulfilled our part of the bargain by inviting you and various others from your group to be witnesses before our committee to help guide our thinking. I must say I'm surprised, considering the courtesy we extended to your group to be part of the political process, that you did not come to us and take us through your work and ask us for our opinions on what you were doing in the way of guidelines, and what you plan to do in the way of the promulgation of those guidelines. It's not exactly asking permission, but in my view, it is a courtesy. I wonder if you'd respond to that.

    Dr. Alan Bernstein: I thought we had done that in the true spirit of cooperation when I was here on October 31.

    The Chair: You came to advise us, but you never asked us to advise you on what we're more expert in--not the science, but the politics of all this.

    Dr. Alan Bernstein: What I did then was two things. One was to talk a bit about the science in response to questions, as I recall, from Mr. Manning and others. I also talked about our process as a way of opening the dialogue, if you will, between this committee and CIHR.

    I didn't deliberately not ask you, but in thinking about it now, I'm not sure it's wise for us to politicize what we were doing. This is off the top of my head, but I think it's better for this committee and for Parliament to deal with the political and public policy issues and for us to deal with the science within public policy developed guidelines and framework, which I believe we have done.

    It's better that we not politicize what we are doing but be available to provide scientific advice and where our best judgments are as to where the science is going and what the potential is. Otherwise we'd become second-rate politicians, if you will, and I think that is not of value to you. I think our value is as a scientific body, an academic group that can provide advice and provide a framework of where we think the world's science is going.

    The Chair: But is it not important for you to have a pretty face-to-face, upfront relationship with us?In fact you've admitted you do not report to the minister; you report to Parliament through the minister. How do you think you could interface with Parliament if it's not with this group that is representative of Parliament? And considering the fact that all your funds flow from Parliament in the voting of appropriations, is it not absolutely critical to you and to the work you do that this money continue to flow?

»  (1700)  

    Dr. Alan Bernstein: Absolutely, and we are accountable to Parliament and to you. That's why I've come here every time I've been asked to be here. I think this accountability is absolutely key to our success.

    The Chair: Okay. I still don't think you get the feelings that are around the table. We vote money to you. You make scientific decisions about where that money goes. But at the same time that we were working through all the various aspects of public policy around this issue, we feel that you jumped ahead of us and said these are the rules. I'm just trying to explain to you the mood in the room, as I see it.

    The other thing is in your presentation you continually said, “Our guidelines fit with the draft legislation”. Every time you said that we all bristled. We understand why your 2001 draft guidelines would reflect what you knew about the draft legislation. In other words, your draft guidelines and the draft legislation obviously should have had some synthesis. But the period between the issuance of your draft guidelines was the period in which we did all our work and tried to accommodate all Canadians in the result of the public policy discussion. Your 2002 guidelines, you also claim, reflect the draft legislation.

    This committee was not comfortable with the draft legislation. So you can see the disparate view here and why basing your second set of guidelines on the draft legislation sends chills up our spines.

    Dr. Alan Bernstein: I appreciate what you're saying, Madam Chair. I hope you appreciate, and I mean this very sincerely, I had a tough choice--council had a tough choice. We had an open and transparent process with some of Canada's top researchers, ethicists, lawyers, physicians, observers from Health Canada. There was a void. I was quite concerned, as was council, that research would go forward that would be in violation of legislation when and if it's passed. There is a gap there. We had a tough call to make--we either do nothing and run a major risk.... I think the recent funding from Genome Canada is an example of that, of significant dollars going to fund human embryonic stem cell research--not that the amount of dollars is the point here. And I think this committee would rightfully be saying to me, “Why didn't you bring in guidelines? You had a working group; you had a process in place. Why didn't you complete the swing?”

    The Chair: No, I can guarantee you I think it would be unanimous on this committee that we would not have asked you to bring in the guidelines until the minister had presented her legislation and it had been through this process. I think you misread the committee in that conclusion.

»  (1705)  

    Dr. Alan Bernstein: At the moment there is no legislation and there is a void, and I felt it was very important to fill that void until there's legislation in place.

    The Chair: May I also say that it is not surprising to us that you get positive response to your guidelines, particularly when you're using as the positive responders the groups that represent patients and the individual patients themselves, because certainly scientists have put out such news as would create gigantic expectations among people who are suffering.

    We are concerned to some degree about the level of those expectations when so far we have seen little return from such research. We, the politicians, are the ones who are going to have to explain the money we flowed to you that you flowed to that research if thousands of, say, Parkinson's patients don't get what they seem to have been promised by the scientists who put out the press releases.

    Dr. Alan Bernstein: I absolutely share those concerns, Madam Chair. Also, I think given the extent of the discussion around the ethical issues of public policy issues on stem cells internationally, not just in Canada, it's almost that we've lost sight of the fact of what you've just said that at the moment it's just a promise. We don't know whether these cells can cure any diseases, and it's almost taken as a given now implicitly. I share your concerns that the public expectations have risen so high, and they can't help but be disappointed in the end.

    The Chair: Well, if you share my concerns, why are you claiming great public adulation for your guidelines when in fact most of it came from patients whose expectations have been unrealistically raised?

    Dr. Alan Bernstein: That's not why we brought in the guidelines. I think the guidelines were brought in to provide an ethical framework for that work to go forward until it's legislation.

    The Chair: I know that, but you can't have it both ways. You can't be worried about something and claim it as a great success.

    We'll move now to Mr. Merrifield.

»  (1710)  

    Mr. Rob Merrifield: Your argument is really interesting. You say you're not ready to form public legislation on this, and that's not your intent. Your intent was the guidelines for the CIHR, which filled the void. That's what you suggested.

    The CIHR does research only with federal money; you are directly involved in setting and approving those dollars. So it makes absolutely no sense in your rationale to say that you're bringing out guidelines that do not impact public opinion on this. That's exactly what you did do, by bringing this forward.

    It's interesting. You did it with a group of scientists, from a scientific perspective. We've talked a lot about adult stem cells versus embryonic stem cells. You know, we argue about both back and forth, about which are the best.

    Science is moving at such a phenomenal rate here. I don't want to argue with you because you're the scientist. You know much better than I would on the issues of which has the most prospect.

    I and this committee have looked at it from a much broader scope than that. We have discerned very quickly, when we talked about this whole area, that the embryo has all the potential of human life. Every Petri dish has a face behind it. It's much more than just cells that we're dealing with. It opens up a slippery slope of ethics that scientists should be nervous about, and general Canadians are nervous about, because of where it can go.

    We've seen that in other countries. Great Britain has now moved to therapeutic cloning. You haven't drawn your line there. You wonder why. Or is that just the next step? Are you going to go to full-blown cloning or reproductive cloning? Where do you draw the line? It becomes very difficult once you've created life and destroyed it to be able to then go and say you're not going to do that.

    Where are we going to end up? Looking down the road 20 years from now, are we going to say that perhaps we can't afford to have disabled people around? So the ethic becomes a cheapening of life, at whatever stage in life. Or is a grandma going to have to look over her shoulder because in later times of life we cannot afford to look after her?

    Those are extreme views. I understand that. I'm suggesting to you that when we open the gate to destroying life so easily, as you have done under your guidelines, it's something that makes us very nervous.

    I'm not going to argue the point of the stem cells, because that's something that I fundamentally believe should be in the hands of Parliament and the people of Canada. They have to decide that issue, not scientists.

    You're much more educated than I am, but believe me, I think I can discern right from wrong. On the issue of whether Canadians should speak on this or scientists should speak on this, I know Canadians should, and therefore I'm saying you're wrong in bringing forward those guidelines.

    So my question to you is this. Because of what you've heard here and the way you sense parliamentarians feel about it, will you suspend your guidelines and your funding until legislation is passed and until Canadians truly can give you direction on what you should and should not do in this area?

    Dr. Alan Bernstein: As I said in my opening remarks, no new funds from CIHR will flow to human embryonic stem cell research until April 2003, given the timeline. So, practically speaking, if Parliament is going to act on this in May, then the legislation will be in place well before our oversight committee will ever even be struck.

    So I see no reason to pull back at this point. I think that would only add confusion to the whole process and subvert what's happened up till now.

    Mr. Rob Merrifield: What it would do is reaffirm your commitment to Canadians that it's their decision.

    Dr. Alan Bernstein: I absolutely agree with that. I think it is Canadians' decision through Parliament.

    I couldn't agree with you more, Mr. Merrifield. It absolutely is the proper role of Parliament.

    Mr. Rob Merrifield: Then is that a yes?

    Dr. Alan Bernstein: It's a yes that I agree it's a proper role of Parliament.

    Mr. Rob Merrifield: Then is it a yes that you'll pull back the guidelines and the funding until legislation is passed?

    Dr. Alan Bernstein: No.

    Mr. Rob Merrifield: Will you pull back at least the funding, then?

    Dr. Alan Bernstein: Yes, until April 2003.

    Mr. Rob Merrifield: Well, that's halfway.

    Dr. Alan Bernstein: It would give Parliament an opportunity to pass the legislation, whatever that legislation will be, and to put in a regulatory structure underneath that.

    Mr. Rob Merrifield: Okay. So no funding will flow until legislation is in place.

    Dr. Alan Bernstein: Until April 2003, which is part of our normal cycle.

    Mr. Rob Merrifield: That's your commitment to this.

    Dr. Alan Bernstein: Yes.

    Mr. Rob Merrifield: Okay.

    The Chair: Thank you, Mr. Merrifield.

    Mr. Szabo.

    Mr. Paul Szabo: The Auditor General just came down with a report, in which she talked about the concerns about foundations and agencies that had funding advanced to them from the government but had no accountability to Parliament. That includes the CIHR. There is no direct accountability to Parliament.

    In fact, I had a report stage motion during the period when I was on the health committee and the bill to create the CIHR was being addressed. At that time, groups such as the Canadian Nurses Association and some others were very concerned that the old funding mechanism under the Medical Research Council was an old boys' network and that new, innovative research wasn't really getting the attention. They were afraid that any new agency would fall into the same morass of an old boys' network, where they had their pet projects and this is what they did, and all these “fringe” things wouldn't get any funding.

    I fought for that--a three-year review of the CIHR by Parliament. I asked Health Canada for their support for that report stage motion, and they denied support. They were not going to support that three-year review. I demanded an answer. I was told by an official who was working in this area that the reason there was no review, no accountability by Parliament of the CIHR, was because it was going to make it a little more difficult to hire a president for the CIHR. In fact, they were saying that if there was accountability to Parliament, certain people wouldn't want this job, simply because they didn't want to have to address Parliament.

    I'd be interested in whether or not you had a stipulation that your position would be conditional on there being no accountability to Parliament.

    Secondly--

    Dr. Alan Bernstein: Could I just answer that now, Madam Chair?

    CIHR is directly accountable to Parliament on an annual basis. We are not like the arm's-length foundations that the Auditor General was referring to in the last few days--the Canada Foundation for Innovation and Genome Canada. We are directly accountable to Parliament on an annual appropriation base. So my position is on the line every year. I am directly accountable to Parliament. And, no, I did not insist that I not be accountable to Parliament.

    Mr. Paul Szabo: I think this committee probably has a different understanding as to what accountability to Parliament means. Submitting an annual report is one thing. Coming before Parliament and receiving from this committee a review of what steps you've taken, what changes you've made, what proposals you've had in order to inform us, to bring us up to speed as to whether or not your mandate is being held and whether research objectives are being met and whether the dollars are being.... That's accountability. That's not what you're talking about.

    The Chair: Mr. Szabo, we do have the right to invite them every year to talk to us about the report and ask as many questions as we want.

    Mr. Paul Szabo: Sure.

    The Chair: They are willing to come and be accountable to us.

    Mr. Paul Szabo: Under some--

    Dr. Alan Bernstein: Madam Chair, I would love the opportunity to come and talk to you about how transformative CIHR has been, relative to the old Medical Research Council. It's remarkable what's going on in this country in health research.

»  (1715)  

    Mr. Paul Szabo: When the House comes back after the summer and I can put a private member's bill back in, I will certainly be putting through a private member's bill to reinstate the report stage motion to obligate CIHR to be subject to at least a three-year review. And I'll be looking for your support at that time.

    Doctor, one of the things you said during one of your comments, and I want to clarify it, was that stem cells can create a human being. Do you recall saying that?

    Dr. Alan Bernstein: Yes. What I said was we know that there are embryonic stem cells that give rise to human beings. I think that's the phrase I used.

    Mr. Paul Szabo: Including germ-line cells?

    Dr. Alan Bernstein: Yes. Human totally potent stem cells--

    Mr. Paul Szabo: Totally potent...no, no, wait a minute. Embryonic stem cells.

    Dr. Alan Bernstein: Well, I should have said totally potent there.

    Mr. Paul Szabo: Stem cells themselves can't create. There are certain.... Okay. I was just curious because I remember reading about that.

    Dr. Françoise Baylis presented the guidelines with you at your press conference on March 4--and I'm curious why you moved it from the Friday to the Monday when Parliament wasn't sitting. In any event, before this health committee last May, she said:

Unless and until we are confident that we should proceed with the novel and ethically controversial activities identified, it is imperative that they be prohibited.

--i.e., we have to be sure.

    She went on to say:

The first thing to recognize in the legislation and in all of your conversations is that embryos are human beings. That is an uncontested biological fact. They are a member of the human species.

    You've been saying before this committee all along and in all your public statements about the tremendous potential--you have been careful as a lot of hype has been raised, but the word was “potential”--and you even said today that you're not sure whether or not they'll ever be able to deliver it, but the expectation is very high.

    Dr. Baylis seems to think that embryos are human beings, and I think a lot of Canadians think embryos are human beings. In fact, the United States Secretary of Health and Human Services just announced new regulations in the United States, redefining child as a person under 19 years of age, including the period from conception to birth. So in the United States they recognize a human being to be protected and in fact to be insured for health services for prenatal services. So there are a lot of people around who seem to think that embryos are human beings.

    Do you think it's ethically permissible and acceptable to destroy a human being--a real human being--for the potential to possibly help another human being?

    I would phrase that in the context of other information Dr. Baylis gave when she said to the press afterwards that of the approximately 250 embryos estimated to be out there in fertility clinics now, only half of them would have survived the freezing and the thawing process. Of the 125, only about nine would be good enough to produce stem cells. And of that, not even that many--she suggested maybe only five--would be of a quality high enough to meet the research standards necessary for embryonic stem cell research purposes, based on her statement.

    This means that basically out of 250 you get five. In other words, you need 25 embryos to be killed--25 human beings have to be killed--to get one stem cell line.

    Have we told Canadians that in your research that's in fact what you have to do? You have to kill 25 human beings to get the stem cell that might potentially help a human being.

    This is the issue, why we're here. You said you don't want to make policy; you had to step in. But in fact all you have the authority to do is affect funding. You didn't have to come out with any guidelines. All you had to do is say we're still not funding embryonic stem cell research. That's all you had to do.

    The Chair: Mr. Szabo. You are--

    Mr. Paul Szabo: Did I use up all the time?

    The Chair: You're well over, and Dr. Bernstein hasn't had a chance to respond.

    Mr. Paul Szabo: I apologize. I'll leave it there. I'd appreciate your comments.

    Dr. Alan Bernstein: My response will be very brief. I would just remind the committee that at the moment it is permissible to do research on human embryos.

    Mr. Paul Szabo: Under the Tri-Council policy.

    Dr. Alan Bernstein: Yes.

    Mr. Paul Szabo: Which is the researchers' rules, not governments' or legislatures'.

    Dr. Alan Bernstein: That's correct, and that's why we brought in our guidelines.

    The other issue, of course, is the way the guidelines are written in the Tri-Council Policy Statement. The Tri-Council reads that one can only do research on embryos that were not generated for research purposes but that are in excess to those required for in vitro fertilization and assisted human reproduction. So the bulk of those embryos would probably be discarded eventually anyway. I think the thinking behind the Tri-Council was--and I'm not defending the Tri-Council, but merely telling the committee this--if these embryos are going to be discarded anyway, under appropriate conditions and if they hold this promise or potential for curing very, very serious diseases, shouldn't we explore these under appropriate conditions of informed consent?

    I acknowledge that these are very tough questions. These are not cut and dried. On the one hand, there are the very serious issues that you have raised, and I respect the right of many, many individuals in this country who hold those views. I'm also aware that there are very many people in this country who have very serious diseases, who are saying that if we're going to flush these embryos literally down the toilet, why not use them to try to cure some serious human diseases? That's the ethical issue that you are facing--luckily not me, but that you are facing.

»  (1720)  

    The Chair: Thank you, Mr. Szabo.

    Ms. Skelton has a small question.

    Ms. Carol Skelton (Saskatoon--Rosetown--Biggar, Canadian Alliance): A very small question, Dr. Bernstein. The Government of Quebec is moving towards banning embryonic stem cell research. What and how will your organization respond to provincial bans on embryonic stem cell research?

    Dr. Alan Bernstein: There are two responses. Of course, if a province says there's a ban, there's a ban. It would be up to the federal government to decide whether to respect that or not. It's not up to CIHR.

    Secondly, this committee might be interested in knowing, though, that the Fonds de la recherche en Santé du Québec, the Quebec funding agency for all of health research, has issued a directive as of last week that they will adhere to CIHR's guidelines.

    The Chair: That could be interpreted as just another sign that the whole scientific community operates totally freely and is not really too worried what the federal government or the provincial government is saying or even suggesting might happen, but rather operates on its own.

    Another example of that is you're constantly talking about this tri- something or other, as if it were the law of the land, but there wasn't one legislature in Canada that endorsed it or said that this is what scientists should follow. It was a gentlemen's agreement, as Mr. Szabo said--that old boys' club, which now has a few girls in it, getting together and saying, okay, this is what we'll do.

    But our concern with all that is we are responsible for the money that allows this research to go on--at least those projects that are funded by you and earlier by the Medical Research Council.

    You can see our concern. It's a big loop. In my view, and I think in the view of the committee, we feel it's a loop that in essence we've been left out of. You come to us to tell us, but you never come to us to ask us, if you know what I mean.

    You could feel this imbalance and the discomfort in the room after that press conference in January.

    Dr. Alan Bernstein: Again, I know I'm repeating myself, but I'll say it one more time and I won't say it any more. I view this as an interim measure and a necessary measure until there's legislation, because at the moment there's almost open season on research involving human embryonic stem cells.

    The Chair: Dr. Bernstein, I want to thank you very much for coming to us today. You've drawn a bit of a crowd, and probably people will see you and us on TV. We want to thank you for your commitment that no funds will flow until April 2003, and we are going to try our very best to have a piece of legislation in place by that time.

    Dr. Alan Bernstein: I appreciate that and I appreciate this opportunity to be here.

    The Chair: Thank you very much.

    This meeting is adjourned.