Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 3 - Evidence
OTTAWA, Wednesday, March 3, 2004
The Standing Senate Committee on Social Affairs, Science and Technology, to which was referred Bill C-6, respecting assisted human reproduction and related research, met this day at 9:32 a.m. to give consideration to the bill.
Senator Michael Kirby (Chairman) in the Chair.
[English]
The Chairman: Senators, we are here to continue our hearings on Bill C-6, respecting assisted human reproduction and related research.
We have three panels of witnesses this morning. The first group is from the Office of the Privacy Commissioner, and we will begin with Ms. Jennifer Stoddart, the new Privacy Commissioner.
Welcome to your new task. We have had dealings with some of your predecessors over the years and are delighted to have the opportunity to have you appear before us today. Please proceed.
Ms. Jennifer Stoddart, Privacy Commissioner, Office of the Privacy Commissioner of Canada: Honourable senators, we are happy to be here this morning. As the chairman has said, this is the first time that I have been before you since we met in the context of the ratification process, so I take the opportunity of thanking you for your support.
[Translation]
I would like to thank you for the confidence you have shown in me by approving my appointment to this position. I will do my best to fulfil my duties.
With me this morning is a senior policy advisor on privacy, Mr. Carman Baggaley.
I will take a few minutes to outline the position of the Office of the Privacy Commissioner, and then I will be pleased to answer your questions.
[English]
Thank you, honourable senators, for inviting me to comment on this important and highly sensitive legislation that attempts, after many years of debate, to address a number of issues related to the use of assisted human reproduction technologies.
In appearing before you today, I am aware of the long history of this legislation and of the extensive discussions and consultations that shaped the present legislation. The assisted human reproduction bill raises challenging legal, moral, medical and ethical issues. It is not surprising, given the highly sensitive nature of the issues addressed in the bill, that Canadians disagree strongly about the legislation.
I am certainly aware that this committee has heard from several eminent witnesses who have raised competing yet valid concerns about many of the provisions in this bill. The subject is complex and so, too, is Bill C-6. Part of the complexity and part of the controversy surrounding the bill relates to the federal government's use of its criminal law power to prohibit and regulate certain reproductive technologies. This, though, is but one of the several difficult issues that this committee has to address and which falls outside the mandate of the Office of the Privacy Commissioner.
[Translation]
To begin, I want to be very clear about where our office's expertise and mandate lie. Privacy issues, broadly defined, arise with respect to several aspects of the legislation. However, the Privacy Act and Personal Information Protection and Electronic Documents Act regulate informational privacy in the federal sector. Our comments on this bill are therefore restricted to the provisions dealing with the protection of the personal information collected as part of the assisted human reproductive process and the oversight regime that will govern it.
Under this bill, clinics, physicians and other licensed facilities providing reproductive services would be required to collect highly sensitive ``health reporting information'' and provide it to the proposed Assisted Human Reproduction Agency, which will fall under the responsibility of the Minister of Health. This information will relate to people donating reproductive material, people making use of reproductive techniques, and, indirectly, to the offspring of these processes.
If the donors and the individuals who use these reproductive techniques do not feel confident that this health reporting information is adequately protected, they almost certainly will not participate. I do not think it is an exaggeration to suggest that the success of the regime will depend on the policies and procedures that are put in place to protect this information.
[English]
On the whole, we are satisfied with the measures being proposed regarding the protection of personal information. The legislation imposes certain responsibilities on the assisted human reproduction agency. Creating this arm's-length agency to oversee the licensed facilities and to hold personal health information is, we believe, a good first step. It segregates this information from Health Canada's other responsibilities.
The bill has specific provisions dealing with the protection of personal information, and this is set out in clauses 14 to 19. Licencees are required to inform individuals how their information will be used, when it will be disclosed and how it will be protected. Written consent is required, except for specified disclosures. It provides for access and correction rights and has provisions dealing with the destruction of personal information. It also requires licencees to inform individuals in writing of these requirements. On the whole, we think these are good provisions to protect personal information and, thus, privacy.
[Translation]
We have carefully examined the legislation in terms of oversight. We are satisfied that the proposed Assisted Human Reproduction Agency would be subject to the Privacy Act and thus to the oversight of my Office. The Office of the Privacy Commissioner will also have oversight, under the PIPEDA, over the collection, use and disclosure of personal information by licensed facilities engaged in commercial activities, except in those provinces that have passed substantially similar legislation. Only Quebec has passed legislation that has been recognized as substantially similar. As well, provincial health information protection legislation, where it exists, will provide an added measure of protection.
The privacy principles set out in Bill C-6 seem, on their face, to be adequate. The challenge for Health Canada, the agency and the licensed facilities will be putting these principles into practice.
In particular, it will be absolutely critical that the licensed facilities do a good job of explaining to individuals how their personal information will be used, how it will be protected, when and to whom it will be disclosed and how they can complain if they believe that their privacy rights have been violated. And the agency will need to have the expertise to ensure that the licensees abide by the requirements of the legislation.
[English]
There are two matters of substance I would like to raise at this point. One relates to the question of whether the name of the donor of reproductive material should be disclosed to the offspring without consent; the other concerns regulation-making authority. Let me deal with the donor name issue first.
Our right to privacy is multi-faceted. It is based on tradition, on social norms, on the law and on international conventions, to cite but a few sources. The notion of consent is central to privacy. By exercising our right to grant or withhold consent, we can attempt to control who has access to information about us and for what purposes.
We also have a limited right to obtain information about ourselves. This right flows in part from our rights as citizens. More recently, legislation such as PIPEDA, has given us the right to obtain information held about us by private sector organizations. In these areas, we have recognized a right to obtain information about ourselves and enshrine this right as one of the fair information principles.
This right is not universal, however. In other areas of our lives we cannot compel organizations or individuals to give us this information. In our view, the present legislation strikes the right balance in this contentious issue.
[Translation]
In our view, this legislation strikes the right balance on this contentious issue. We agree that donors should have the right to control access to their identities, except in specific circumstances that raise health or safety concerns. Disregarding this fundamental privacy principle would result in fewer people donating reproductive material, possibly because they would be concerned about being held financially responsible for their offspring. As well, this conforms with adoption norms in Canada that generally require the consent of the biological parents to disclosure of their names.
Without knowing the identity of the donor, offspring can still obtain a great deal of important knowledge from the donor's health reporting information as set out in subclause 18(3) — this could include everything from the donor's medical history to his or her eye colour. Furthermore, the bill does not preclude the offspring from ever being able to know the identity of the donor. It simply makes it dependent on the donor's consent.
[English]
The second point we want to raise involves regulation-making authority. Subsection 65(1) gives the Governor in Council the authority to make regulations on a number of matters, some of which touch on the collection, use and disclosure of health reporting information. As I mentioned earlier, the success of this regime will depend on how it is implemented by Health Canada and the agency. Many of the details of how the agency will function will be set out in the regulations.
However, Bill C-6 makes the normal regulation-making process more transparent and more open. Section 66 requires that all proposed regulations shall be laid before both the House and the Senate for detailed study, and the Minister of Health will be required to explain why any recommendations resulting from Parliament's review are not incorporated in the regulation.
We fully support this provision because of the broad regulation-making authority in the legislation and because it respects the authority of Parliament. This is an excellent model that we would like to see followed in all privacy- sensitive legislation.
I thank you very much, honourable senators, for giving me the opportunity to share my views with you.
[Translation]
Thank you very much, honourable senators, for giving me this opportunity to share the views of the Commissioner's Office with you. I will now be pleased to answer your questions.
Senator Morin: You have given us a very detailed analysis of this bill, Ms. Stoddart. You have put your finger on the most critical points in the bill, which have been mentioned by many witnesses who appeared before us. You have provided a response to these concerns.
[English]
I only have one question, Ms. Stoddart. Do you see any unique issues of personal information privacy protection arising from this bill that would not be faced by any other government agencies?
Ms. Stoddart: Any unique issues that would not be faced?
Senator Morin: Do you see any specific and unique issues with this bill as far as privacy is concerned that would not have been faced by other agencies that also deal with privacy issues at the present time?
Ms. Stoddart: It is not my understanding — and you understand that I have a short history in my present job — that any other government agencies deal with such highly sensitive and personal, if you can say it is very personal, information. My understanding is that this is a type of personal information that goes far beyond the type of personal information usually contemplated for regulation or indeed for legislation by the federal government. It is health information of a very particular type, a very fundamental type. The delicate nature of finding the balance between all the interests and providing the right protection for privacy, is, in my mind, unique.
Senator LeBreton: When we last met, we heard from many people who were the offspring of donors. Of course, there was the whole identity issue, and in some cases they had no information at all — medical or otherwise — on the donor. In your presentation to us you stated that we as citizens have a limited right to obtain information about ourselves. You then say that the donor, without identifying the donor, can have a lot of medical information, including the colour of his or her eyes.
Are you satisfied that this legislation addresses all those concerns so that in the future we do not have people like those who appeared before us last week who have no way of knowing anything about their history at all, medical or otherwise? Are you satisfied that these concerns will be addressed in this bill?
Ms. Stoddart: Yes. Being new to this job, I, unlike members of my staff, had not worked over the years with Health Canada on these issues. I was struck by the innovative approach taken in trying to balance the real problem. As we come to know more and more about the genetic sources of many of the aspects of human existence, thus gaining information about one's heredity, there is an attempt to provide privacy for the donor of reproductive material in the cases where the donor does not consent. Up until now in our society we have seen these issues as being all or nothing. I have seen cases of real human anguish, and I believe we are all sensitive to the human anguish that these situations cause on both sides.
In bringing forth this legislation, we have seen a satisfactory and a creative attempt to say yes, health and security issues are one thing. The importance of knowing the source of your genetic makeup is important and is recognized. On the other hand, this is a process that calls for privacy, if that is the kind of privacy that is requested by those who participated as donors in giving their reproductive material. At the Office of the Privacy Commissioner we find that this is an appropriate balance.
[Translation]
Senator Chaput: Who will be given priority in case of conflict? Would it be the donors, who are entitled to privacy protection, or the offspring, who would like information about their genetic makeup?
Ms. Stoddart: As I understand it, subclause 18(3) of the bill provides that the agency shall, on request, disclose health reporting information relating to a donor to a person undergoing an assisted reproduction procedure and to their descendants. However, there is a restriction on the information that may be disclosed, because some of the information may reveal the donor's identity. However, the donor's identity may be disclosed if the latter consents to this. I may be repeating myself — but this is a very important point — we think this strikes a good balance between the medical, social and genetic needs, with scientific developments on the one hand, and on the other the control donors will have over their reproductive material.
Senator Pépin: In its present form, will the bill provide adequate guarantees that the information will not be used for other purposes — namely that neither Health Canada, much less national authorities, will be able to obtain this information from the agency? As it is worded at the moment, does the bill guarantee that the information held by the agency will remain with the agency?
Ms. Stoddart: This is a very important question. I would like to emphasize to senators that the provisions — which we consider exceptional in Canadian legislative history — are there to ensure that this personal information is not disclosed.
I would refer you to clause 19 of the bill, which states very clearly what information the agency may make public. It takes care to specify exactly what the information is, and that clarifies the fact that there must be no disclosure of personal information compiled in such a way that it can reveal someone's identity. This clause refers to aggregated outcomes, which would be necessary for scientific research. These aggregated outcomes would provide general trends, but would not allow for links to be made with a specific person or persons.
I would refer to the specific provisions surrounding the establishment of the Assisted Human Reproduction Agency of Canada. They have been drafted very carefully to ensure that the agency is at arm's length from the government, that it is transparent, that it is run as strictly as possible and that it complies with the regulations. This legislation contains a very important provision, one that should appear in other types of legislation dealing with privacy protection.
The regulations setting out the exact procedures and the detailed operation of this agency will be debated in the House of Commons and in the Senate. If the government does not accept your advice, it must give its reasons for refusing to do so. This is an extraordinary procedure to ensure not only that there is consensus when possible, but also that privacy protection is ensured.
I would like to close by stating again that I am confident the bill provides for adequate privacy protection. The Office of the Privacy Commissioner has a mandate to oversee the management of the Assisted Human Reproduction Agency of Canada. It would be one of the organizations on which we can conduct privacy assessments or audits where necessary. In addition, people will be able to complain to our office if they fear there has been a violation of their privacy.
[English]
The Chairman: The bill says that the regulations must be tabled before the committees in both the Senate and the House. Will the drafting of regulations be done entirely within the Department of Health? Are you part of the process? Will your input be sought while the regulations are drafted, as opposed to your input being sought once they are actually in final form?
Ms. Stoddart: Mr. Baggaley, my senior policy adviser, informs me that although we work with Health Canada on many privacy issues, we have not up until now been involved in any process of drafting the regulations that would be put before the House.
The Chairman: I do not believe that process is underway yet. My point was that perhaps we could help you by applying some pressure on the department to ensure that you are involved in the early stages and not simply after the fact.
Senator Pearson: I am not normally a member of this committee. I usually attend a committee that sits at the same time, much to my distress, because I would like to have followed all of this discussion. I have not been able to do so as a result of this conflict. My question may have already been answered during the course of discussions.
You may not be surprised to know that I am curious about the interests of the child who will be born from these processes, which are wonderful. It is wonderful that another child will emerge; that is not the issue. My question involves the evolution of scientific knowledge and the fact that a sperm donor may be 18, 20, or whatever the earliest age is for allowing this process. The donor may discover, perhaps when he is 35 or 40, that he has a genetic condition he did not know about. No one could have detected it at the time he donated sperm because we did not have the tests and the technology. Do you think there should be something in the privacy regulations whereby the donor would have an obligation to report that to the agency, or wherever, so that this knowledge would be recorded? The child or the children born from this process would then at least have the possibility of finding out that they, too, may develop this condition.
Ms. Stoddart: Thank you for the question. This is not a question that I or, as far as I know, my office has entertained up until know. It is a very important ethical, moral and scientific question. I will give you my personal views after a very short period of reflection.
I would think that, in the interests of public morality and fostering a Canadian society in which we share a broad base of ethical and moral human values, we should encourage people to do that if one becomes aware of a genetic condition of which one was previously unaware. However, to compel people to do so by regulation at this stage seems premature, with respect, because I am not aware that we compel citizens who learn in the privacy of their doctor's office that they have a genetic disorder or condition to tell their offspring about it. It is difficult to define accurately to whom we must report many human conditions. Therefore, I do not think it would be advisable to compel people to do so at this time.
However, we should encourage people to think about how their own personal health impacts the health of others. With advances in genetic science, we now realize how much we are all interconnected, so we therefore have a moral duty to divulge any conditions that would impact on the condition of others.
That would be my approach at this point.
Senator Pearson: That was a very wise answer.
I presume that the many tests that are given to the donor before the gift is accepted do not reveal certain diseases. For example, I understand that it may be six months before HIV is revealed in a test. Is there anything contemplated in the regulations to ensure that this information becomes immediately available to the parents? Perhaps the screening will be adequate in the first instance. I like what you have said, because I think it is a moral obligation, and I would like to assume that people who are prepared to donate are somewhat altruistic and therefore would be understanding. Could this be dealt with by counselling or something of that sort?
Ms. Stoddart: My understanding is that one part of the bill gives authority to the agency to release any non- identifying personal information that has an impact on the health or security of persons who have undergone an assisted reproductive process. It is my understanding that if the agency becomes aware of a development such as you mentioned, the agency would have an obligation. Clause 18(7) states:
The Agency may disclose the identity of a donor to a physician if, in the Agency's opinion, the disclosure is necessary to address a risk to the health or safety of a person who has undergone an assisted reproduction procedure, was conceived by means of such a procedure or is a descendant of a person so conceived. The physician may not disclose that identity.
This clause attempts to directly address the health and safety issues in a non-identifying manner but in a manner that addresses health concerns.
Senator Pearson: For me, it is not so much a question of identity but of ensuring that the information flows.
Senator Marjory LeBreton (Deputy Chairman) in the Chair.
The Deputy Chairman: We heard testimony last week, Senator Pearson, on the issue of safety and screening. I will ensure that you are provided with that.
Senator Roche: As I pose my question to you, Ms. Stoddart, I do not want you to think that I have an answer and am trying to lead you. I really do not have an answer to this question, and I do not know whether you want to do your thinking out loud. I am very interested in your views on the ultimate right to privacy in the following context.
You have said that, in your professional opinion, this bill is balanced in respect of protecting the privacy of the donor and protecting the child's right to know genetic information. That is probably right in the sense of what this bill is trying to accomplish, and it is certainly better than what we currently have. I accept all of that.
That being said, I am concerned about what I would deem to be the right of the child to more than just genetic information. I believe that when I was born I had the right to know who my father was. As I understand the long history of human civilization, I believe that every child has the right to know who his or her biological parents are. In the age in which we now live, modern technologies can obscure that right.
Where is the heavier right with respect to privacy? Is there an ultimate right to privacy or do you have to give up some aspect of your right to privacy? Does the donor who will have a child as a result of this action have a perfect right to anonymity? Does the birth child not have a right to know who his or her father is?
I do not think I can go any further in expressing my dilemma, and I will accept whatever answer you feel is appropriate to give, but for me it is a privacy question. I would benefit from your insight.
Ms. Stoddart: This question is at the heart of the many complex moral issues that are involved in this bill, most of which we will not comment on because they are beyond our purview. However, as this is a privacy question, we have examined it.
My position that this bill provides an adequate balance between competing privacy rights goes to the fact that privacy is a value and a right that we live together with other rights in different contexts and in different circumstances. We all negotiate our own sense of personal privacy every day that we live, in different contexts and for different purposes.
Privacy does not have one absolute definition. An individual's sense of privacy depends very much on the context, the people and the circumstances with which he or she interacts and the purposes for which any information one divulges about oneself is given. The example that comes to mind now relates to court records that we did not hesitate to publish a generation ago. We now have to look at the publication of court documents, which are an integral part of our legal tradition, because of the impact of the Internet. Therefore, privacy has an evolving and constantly changing definition in our highly technological world.
Concerning your question as to whether this is not a right, and a right which members of the human species have always enjoyed, I point out with great respect that it is only something those in the last generation can dream about given the evolution of scientific knowledge on DNA. Before that, it was technically impossible, as far as I know, to know who your biological parents were.
Thus, societies in their wisdom — and I reference here the Quebec Civil Code — in the interests of social stability, family harmony, uniform rules and so on made rules such as the husband is deemed to be the father of the wife's child. This was an historic attempt by our societies to come to terms with the fact that we could not absolutely know our biological heritage. We now have this possibility and it places new dilemmas in front of us.
In solving those dilemmas, it is wise — certainly at this stage of our society, which is coming to terms with the moral rules governing the tremendous scientific knowledge that we have and the changes that result in human behaviour, family structures, legal responsibilities and so on — to balance our rights and to try not to make irrevocable decisions in throwing our balance one way or the other.
I come again to the assessment that my office and I give to this legislation, which is an innovative and a courageous attempt on the part of the Canadian government to legislate something which, in other societies, is left to the vagaries of the commercial marketplace. Given the importance the Canadian government and Canadians give to the Charter of Rights, and with all the controversies that this legislation may engender, it is a noteworthy attempt to say, ``We, as Canadians, are doing this within the framework of the values we hold important.''
In answer to your question, rather than say ``I have an absolute right to this or that,'' we have come to a point where we recognize the right to information that affects our health and security, and a recognition of the competing right of the donor to maintain his or her privacy about the use of their own reproductive material if they do not consent to divulge it.
Senator Roche: Do you think infertility clinics ought to bring forward in a more direct manner the option of disclosure to donors? There is some testimony that most donors, if they thought about it, would allow disclosure. One of the reasons you adduced to not commanding this is the risk of financial responsibility on the part of the donor. I suppose that is a factor. However, I would like to focus this question on whether the fertility clinics ought to be more forthright in, if not urging, at least bringing forward the option of disclosure so that from the outset the donor will think about it.
Ms. Stoddart: Honourable senators, it is difficult for me to give you a direct answer on that question because it is very early in the process to say what fertility clinics should or should not be doing. A whole series of issues will be addressed by regulations. These regulations will be the object of extensive debate and will come back before you.
I also note, and we read with interest, that the bill provides for obligatory counselling. I presume in the counselling process that complete information will have to be given to people about their options and the consequences of their options, as far as is known to those who are giving the counselling at that time. That is something we have to look at as the process unfolds.
An important part of privacy rights is the notion of consent: Do I consent to the disclosure of information about me, knowing all the consequences of the implications of the consent I am about to give? Your question goes to the issue of informed consent as provided in the bill and the importance, as I said in my opening remarks, of following how this legislation will unfold, following its administration and ensuring that people have appropriate information as to all the options before they make weighty and often irrevocable decisions.
Senator Cordy: In developing legislation, it is always nice to hear that a balance has been struck. It is always difficult. As you also said, some people consider parts of the bill flawed, while others who have appeared before us have said about the same provisions, ``But that is the best part of the legislation.'' Indeed, we always seem to be trying to strike the right balance.
In answer to a few questions, and in your presentation, you spoke about how critical it is that the licensed facilities do a good job of explaining the personal information to individuals. The bill also talks about counselling. Should this giving of information, which is combined with counselling, be done by the fertility clinics or be done independent of the clinics?
Ms. Stoddart: That is an interesting question, honourable senator. It is not one on which I have reflected.
Ideally, the type of counselling, and therefore the type of information that is given, should be the most objective possible. I do not know enough about this field to pronounce on whether clinics are objective enough in the process to be the best place from which counselling would emanate. They might be legally responsible for giving counselling, but they could hire, for example, noted authorities to do it who would be professionally independent. One can see that different arrangements could be worked out.
What we should look for is that the kind of counselling that is given is counselling whose content is independent from any other interests in the process. As I said, there are many ways to do that. It is an important issue.
The Chairman: I want to take advantage of you being here by asking you a question that is not related to Bill C-6. One of the dangers in appearing before a Senate committee is the broad licence we take with some of our witnesses. You probably do not know the answer to this question, but perhaps you could get back to us with an answer.
When the Personal Information Protection and Electronic Documents Act came before members of this committee three or four years ago, there was a considerable difference of opinion between ourselves and the government concerning the way health information was treated or, more appropriately, was ignored. Therefore, we amended the bill. That amendment was accepted grudgingly — and I think that is a fair adjective — by the House of Commons. That bill has now gone into effect. Down the road, it would be of interest to us to understand what your office's reaction is to the way that legislation is being implemented with respect to health information in general and, in particular, what your office's position is, or will be, on the issue of an electronic patient record. In our health report, and in a number of other things we have done, this committee has been very strong on the need to have an electronic patient record as a means of improving the delivery of health care services, in particular in remote areas, and in making the Canadian health care system substantially more efficient. Your predecessor was adamantly opposed to an electronic patient record. On more than one occasion we had fairly acrimonious discussions on the subject. At some point when you feel comfortable in your new job, we would like to you come back to us on this subject.
While privacy is obviously critical — and there is no question about that — it is equally true that the development of a national electronic patient record of some form is critical to the ultimate fiscal sustainability of the health care system. The question is how we balance those two things. I suggest it would help us if, over the next few months, you could look at that issue and come back, perhaps in the early fall, and talk to us about it. It is an issue on which we have tangled with your office in the past. We do not intend to back off. I am hoping a reasonable compromise may be reached.
That was more of a statement than a question. You can tell that we are very soft-spoken in this committee.
Senator Morin: The chairman was wise to bring this issue up because we have concerns with it.
There were two specific issues with PIPEDA that were different. Maybe you could look them up. One was in regard to research in the health care delivery system and how that personal information could be used. The other issue was the administration of the system itself. These were two different issues, you will remember.
While we feel that the research issue, as far as administration of the health care delivery system is concerned, has progressed very well, the process has not moved as well. I would like you to look at these two different issues, if you can, Ms. Stoddart.
The Chairman: Thank you for letting us take some licence with your appearance here this morning. Thank you for coming.
Ms. Stoddart: I have noted your requests.
I will allay any fears or apprehensions of an upcoming skirmish by saying that I am not against electronic health patient records. I think we have to take the benefits of technology, providing we ensure that technology does not erode our privacy.
The Chairman: That is exactly our position. We need your input with regard to the second point.
Ms. Stoddart: You have a busy morning. I have taken note of your questions and I would be pleased to come back later to discuss these issues.
The Chairman: Honourable senators, our next panel of witnesses consists of six representatives from — and I trust they will not take this in a pejorative way — disease-specific organizations. Please come forward.
Thank you all for coming. Our first presenter will be Ms. Deanna Groetzinger.
Ms. Deanna Groetzinger, Vice-President, Communications, Multiple Sclerosis Society of Canada: Good morning. The Multiple Sclerosis Society of Canada is pleased to provide input on the legislation to govern assisted human reproduction. With me today in the audience are two experts on whom I hope you will draw during the question and answer period. One is John Chafe. He has lived with the disease for nine years. He is part of a ground-breaking experimental treatment that involves transplanting his own bone marrow stem cells back into his body to try to stop the devastating effects of MS.
The other expert is Dr. Harold Atkins, one of the principal investigators in this bone marrow transplant study. He is with the Ottawa Hospital, General Campus.
Our focus today will be confined to those parts of Bill C-6 that deal with the potential for research, to utilize advances in science to treat and potentially cure multiple sclerosis, an all-too-often disabling disease of the central nervous system.
People with MS have been greatly encouraged by the pace of MS research in recent years. There are four treatments that have a modest impact upon the disease. Fortunately, these treatments have the greatest effect in the early stages of MS. However, people who have reached the more progressive stages of MS have frequently said, ``Why is nothing available for me? Why can research not do something for me today?''
The Multiple Sclerosis Society shares this sense of frustration and urgency. Through our own research program, we fund investigators who hope to repair the damage that MS does and develop treatments for MS that will help people who are already disabled because of this disease.
The Multiple Sclerosis Scientific Research Foundation, which is related to the MS Society, has recently funded a large collaborative study to find out if the body's own stem cells in the adult central nervous system can be transformed into a cellular repair team to mend damage caused by MS. If successful, this work should lead to specific therapies for myelin repair. The foundation is also funding the research I mentioned initially: a large study of the potential of bone marrow transplantation as a treatment for MS. In this study, a participant's own bone marrow stem cells are saved and then reintroduced following chemotherapy treatment to renew the old — and presumed faulty — immune system. So far seven people, including John Chafe, have undergone treatment. Hopefully their disease has stabilized.
We mention these innovative research projects to let the committee know that the Multiple Sclerosis Society of Canada is excited about the potential of using adult stem cells in the treatment of diseases such as multiple sclerosis. We are also cautious of their limitations and believe that stem cells derived from embryonic sources may have greater promise for therapeutic use.
The MS Society of Canada realizes that the use of embryos as a source for stem cells is controversial. We believe that the legislative and regulatory framework in Bill C-6 will provide sufficient scientific controls and prohibitions and that there are important benefits that may come from this research. This includes the potential for developing therapies that will allow people who are now disabled because of MS to walk again, to return to work, to pick up and hug their children.
We also believe the possibility of using adult stem cells should not negate the use of embryos from existing sources to derive stem cells. Geneticist and science commentator Dr. David Suzuki addressed this issue as well, saying that:
...the issue of embryonic and adult stem cell research is often polarized...as one versus the other. In fact, we need to do both. Our understanding of early human development is very limited. Researchers say the best way to learn about how stem cells function is by studying embryonic stem cells along with adult stem cells to compare the two. To do that, researchers should have access to embryos destined for destruction. Denying such access is a terrible waste.
The Multiple Sclerosis Society of Canada believes that the legislation, if passed, would provide the framework within which the scientific community could work to meaningfully advance scientific knowledge and potential therapies for currently devastating diseases like MS. We also agree with the statement by the House of Commons Standing Committee on Health in its report entitled ``Assisted Human Reproduction: Building Families'' that ``assisted human reproduction and related research must be governed by principles and practices that respect human individuality, dignity and integrity.''
The Multiple Sclerosis Society of Canada agrees with the legislation that the research and medical use of embryos should be strictly licensed and controlled. We agree with the approach of using as a source of embryos only those that are considered surplus from in vitro fertilization procedures with the consent of the donors. We do caution in the future that there may be a need to re-evaluate this approach to provide more sources of embryos, possibly from individuals who agree to donate, but we suggest that this be considered later at the three-year review period.
The MS Society agrees that the legislation should cover all research activity in this sensitive area and not differentiate between government-funded and privately funded sources.
In closing, I thank the committee for this opportunity to present the views of the Multiple Sclerosis Society of Canada. We commend you for your thorough approach but do urge you to proceed as soon as possible with the passage of Bill C-6. Mr. Chafe, Dr. Atkins and I would be pleased to respond to any questions you might have during the question period.
The Chairman: Thank you for your comments.
Mr. Robert Hindle, Chair, Juvenile Diabetes Research Foundation: Good morning, honourable senators. I am the Chair of the Board of Directors of Juvenile Diabetes Research Foundation Canada. JDRF meets regularly with parliamentarians to speak about the challenges we face in finding a cure for juvenile or type 1 diabetes and are pleased once again to be here to present our views on some very important issues.
Founded in 1974, JDRF is the largest non-profit, non-governmental funder and advocate of diabetes research in the world. JDRF's mission is clear: to find a cure for diabetes and its complications through research. Since its inception, JDRF has provided more than $900 million to diabetes research and has been at the forefront of all major breakthroughs in diabetes research worldwide.
Juvenile, or type 1, diabetes is an auto-immune disease and is the most severe form of diabetes, striking infants, children and young adults, leaving them insulin-dependent for life with the constant threat of developing devastating complications. Type 1 diabetes is different from type 2, generally referred to as adult-onset diabetes, which can be treated and, in most cases, prevented with diet, exercise and drugs.
We thank the committee for the opportunity to share our views on Bill C-6. JDRF fully supports the overriding principles within Bill C-6 but is concerned with some provisions that require further discussion prior to implementation.
The next 10 years hold tremendous growth potential for ground-breaking cures, as research advances are happening at an incredibly fast rate. From the research perspective, it is for this reason that JDRF supports the three-year review of the administration of this legislation. It is important that the legislation accommodate future promising research advances.
We also believe it is crucial to have the correct composition and representation on the assisted human reproduction agency and the proposed board of directors. As stated, it is also important that the individuals are chosen based on their expertise, diversity of knowledge and commitment to the implementation of the legislation.
JDRF recommends that Bill C-6 strongly reflects the fact that not only is it important to have appropriate representation from the scientific community but also appropriate and adequate representation from patient advocacy groups.
JDRF understands the requirement for the creation of a separate agency but notes that the proposed body may duplicate existing work of the CIHR, particularly on human pluripotent stem cell research. JDRF recommends that the agency and CIHR's National Stem Cell Oversight Committee work closely on all aspects of stem cell research issues so that there is consistency on this very crucial aspect of such research.
As the members of the Social Affairs Committee know, the use of human reproductive material for research is one of the most contentious and publicized areas of Bill C-6. This area is also of great interest to JDRF for a variety of reasons. The Edmonton protocol, a set of procedures for islet transplantation, has been hailed as an historic breakthrough to cure diabetes. There are still several problems. Researchers are working to address these issues and the procedures required. Among these is that the current supply of donor pancreases may well never meet the demand. Embryonic stem cell research holds the promise of creating a new supply of islets for transplantation.
JDRF supports the use of both adult and embryonic stem cells for research purposes. As such, JDRF supports the section of the bill dealing with embryonic stem cell research; that is, that this type of research be conducted in accordance with regulations and licensing protocols.
JDRF opposes a permanent ban on somatic cell nuclear transfer, commonly referred to as therapeutic cloning. There is a very important difference between reproductive cloning, which is the use of somatic cell nuclear transfer technology for the purpose of creating a human being, and therapeutic cloning, which is the use of somatic cell nuclear transfer technology to derive stem cells in order to develop therapies to help cure various diseases. The promise of therapeutic cloning is that a patient's body would not reject the transplanted cells. Reproductive cloning is the use of technology to create an embryo and implantation into a woman's uterus to create a child. JDRF strongly opposes reproductive cloning.
Therefore, we do not agree with the proposed ban on therapeutic cloning. We believe that it is too early to put permanent legislative restrictions on this type of research without knowing its full potential. We advocate the creation of a regulated and licensed framework limited to conditions in which there is strong justification for research that cannot otherwise be performed.
Members of this committee have been supportive of JDRF's efforts to seek an amendment on the ban to therapeutic cloning. We greatly appreciate this support. However, at this time, and given the numerous legislative hurdles Bill C-6 has faced since its first introduction in early 2002, we are not seeking an amendment at this time. This legislation, in its current form, is far too important to put at risk because it addresses the legislative and regulatory void that currently exists in Canada. Instead, we look toward opportunities during the three-year review of the administration of this legislation to advocate this change. JDRF strongly feels it is important that this legislation accommodate future promising research advances.
In conclusion, we respectfully request that the committee carefully consider the recommendations we have put forward and encourage the committee to pass Bill C-6.
Thank you for your time and consideration. We would be pleased to answer any questions you may have.
The Chairman: Thank you, Mr. Hindle.
Mr. Kenneth Kramer, Vice Chair, Muscular Dystrophy Canada: Ladies and gentlemen and Mr. Chairman, honourable members of this committee, I wish to thank you for considering my position and that of the organization I represent on the bill that is before you today.
I am Vice Chairman of the Board of Directors of Muscular Dystrophy Canada. I am also a practising lawyer in Vancouver, British Columbia. I am here today, however, as a person with a neuromuscular disorder.
I want to begin by telling you that it is difficult for me to share with you exactly what sort of neuromuscular disorder I have. My parents were told when I was a child that I had Duchenne muscular dystrophy and would probably not live past the age of 30; but I am older now and have been told that I most likely have spinal muscular atrophy type 3.
Despite the uncertainty in my diagnosis, what is certain is that I am dying — maybe not today or tomorrow, but most likely before the life expectancy of the average Canadian.
For me, life is very much dependent on respiratory function. As long as I am able to breathe independently, I can hope for a reasonably long life. Otherwise, respiratory challenges could conspire to shorten my life. None of this is definitive. This is the world I live in, where my body cannot be depended upon in the same way that I rely on my mind. My muscles have progressively weakened over time. My mind has allowed me, however, to pursue a professional career and enjoy other challenges. I embody the mission of the organization I represent, Muscular Dystrophy Canada, which supports the independence and full participation of Canadians with neuromuscular disorders with the purpose of assisting individuals to participate in the decisions that affect them and collaborate with others for social change.
For others like me, there is even greater uncertainty. Other forms of spinal muscular atrophy lead to death in infancy. If I had Duchenne muscular dystrophy as originally diagnosed, it is very unlikely that I would have lived long enough to be speaking with you today.
The costs of neuromuscular disorders are staggering, from the equipment needed to the impact on the economic well-being of those living with a neuromuscular disorder and their families. Here are the numbers: A staggering 46 per cent of clients registered with Muscular Dystrophy Canada earn less than $20,000 a year; only 12 per cent of our clients are employed full time. For me and for them, research is the great equalizer. Governments could buy more wheelchairs, more home care, create more integrated programs, more income supports, and I urge you to please consider to do so. These solutions cost immense amounts of money, but government can also recognize that these people need help — that I need help. The best way to reduce the costs of disability is through supports that have an impact on the disability itself.
I am not a scientist. I cannot tell you with any certainty what incredible potential lies in embryonic stem cells versus adult stem cells. Even if you are a scientist, this debate rages on and on. The arguments I hear against embryonic stem cell research are predicated on moral grounds — the slippery slope argument. These arguments against embryonic stem cell research are arguments of fear that we will tread too far, do damage and harm. These are not arguments of hope. These are arguments that the scientists cannot be trusted, that the agency that this legislation will create cannot be trusted to continue monitoring research and make informed decisions on future limits and regulations. However, the research community is not an immoral one. In fact, it already abides by the content of the bill without it being enacted.
Everyone I have heard arguing against embryonic stem cell research states that there is some hope that adult stem cells will be adequate and up to the task of treating disorders like mine. That may be true, but I am here today to say that there is also hope in embryonic stem cell research, hope that is desperately needed, that is not immoral and that does not create a slippery slope. In fact, I believe that a slippery slope may exist only where there is no regulation, no legislation, no monitoring agency — and, in fact, that is our current situation until this bill passes.
The hope that embryonic stem cell research provides is the promise of real, deliverable treatments. The ability to grow new tissue like muscle from stem cells is real. It has been proven to be possible and is not far from being viable in human trials. That is hope, real and tangible.
Until we are certain and there is no doubt that adult stem cells can do and be everything that embryonic stem cells can be, we cannot make the choice between the two. We cannot be arbitrary. There is nothing more exasperating than arbitrary decisions, especially in the process of lawmaking, where the impact of this legislation will reign for years. If the lifespan of many affected by neuromuscular disorders is only a few years, then that impact is too long. If it takes years to move basic research to effective treatments, then an arbitrary decision is unconscionable.
We need legislation to regulate assisted human reproduction and we need legislation to regulate the use of stem cells, but we need this legislation to create a playing field with known boundaries, not legislation designed to stop the game in progress. The bill in front of the Senate provides this, and it provides the framework for an agency to monitor the activities of Canadian researchers and to continue this issue in depth.
We cannot be stopped by our fears from providing hope to the Canadians who so desperately need it. As John F. Kennedy said, ``We should not let our fears hold us back from pursuing our hopes.'' Let us be reasonable: This legislation is as restrictive and protective as it should be. It creates an agency that will prevent the government from having to enact future legislation like this in a vacuum of information. We need the hope. Let us not allow the fears to get in our way.
At Muscular Dystrophy Canada, the final part of our mission is to fund research to improve the quality of life of people with neuromuscular disorders and to find a cure. I hope you can join me in that vision, in a vision of hope.
Thank you all today for your time, and I would be happy to answer any questions.
The Chairman: On behalf of all of my colleagues, Mr. Kramer, I thank you for the effort that you made to come here all the way from Vancouver. We appreciate it.
Mr. Steve Rudin, Executive Director, Alzheimer Society of Canada: On behalf of the Alzheimer Society of Canada, we thank you for the opportunity to appear before your committee. This presentation, in a brief period of time, will provide the committee with information about the Alzheimer Society of Canada, Alzheimer's disease and the views of the society regarding Bill C-6.
Alzheimer's disease is a progressive, degenerative disease. Several changes occur in the brains of those with Alzheimer's disease. The brain cells shrink or disappear and are replaced by dense, irregularly shaped spots called plaques and thread-like substances called tangles. These tangles eventually choke healthy brain cells and cause them to die.
In the words of one of our newly appointed board members, who actually has Alzheimer's disease, she described it as follows:
I noticed that my thinking was becoming rather flawed. It was as if my head were full of cotton wool and I had disconnected fragments of thoughts in my head. My thoughts were jumbled and I could not link ideas. The cotton wool got replaced by thick molasses.
Alzheimer's disease is the leading cause of dementia. It is characterized by a set of symptoms that include the loss of memory, judgment and reasoning, and changes in behaviour and mood.
Although Alzheimer's disease is not a normal part of aging, most people who develop the disease are over 65. The older you get, the greater the risk of getting the disease. There are some people in their forties, fifties and early sixties who are diagnosed with the disease. Although it is referred to as ``early onset,'' the signs and the symptoms are exactly the same as for ``later onset.''
For people with Alzheimer's disease, it eventually affects all aspects of their lives: how they think, how they act and how they feel. It is a personal disease and it is difficult to predict the timing of the disease's progression. People can suffer with the disease anywhere from two to 20 years.
Alzheimer's disease is not a recent discovery, although it appears as if it were. It was first described in 1906 by Dr. Alzheimer, who described the disease very much as it exists today. It now affects more than 360,000 Canadians, and that does not count the families of those who are involved with the actual people who have the disease. That is one in 13 Canadians over the age of 65 and one in three Canadians over the age of 85, which is the most rapidly growing demographic in our society. In 20 years, if there are no significant breakthroughs to stem the rising tide of Alzheimer's disease, the 360,000 Canadians affected currently by the disease will more than double to three quarters of a million.
Women are affected more than men. Two thirds of people over 65 with Alzheimer's disease are women. While it is true statistically that more women than men are diagnosed with the disease, age is still the driving risk factor. All kinds of research studies are currently underway to examine why there is gender imbalance.
Most Alzheimer's disease caregivers are women and one out of 10 Canadians are currently in the sandwich generation, where they have to decide whether they will look after their grandchildren or take care of their parents are Alzheimer's disease. More than 6 per cent of Canadians have an elderly family member living with them and more than half of the people who suffer from Alzheimer's disease are currently living in the community. We know that caregiver stress amongst the spouses, aunts, uncles and grandparents is one of the leading factors in terms of chronic diseases and depression, which is twice as frequent as it is in non-caregivers.
As well as the social costs of the disease, it is a potential economic disaster that looms on the horizon. Unless the disease is brought under control, the cost of providing help to those affected will be unsustainable. Currently, it is about $5.5 billion. The cost to corporate Canada is significant in that people do require time off to take care of loved ones, and the estimated cost of that is over $3 billion.
The society itself was founded in 1978 to address some of the issues that I discussed. Simply put, the objectives of the Alzheimer Society of Canada are, as my colleague has pointed out, to provide help for today and hope for tomorrow, and enable us to live in a world without Alzheimer's disease.
There are two basic program pillars of the society. One is support services, along with its educational components, and the second is providing the funding of a world-class research program for Alzheimer's disease. The support services include information, publications and videos, but research is really the key to the cure. The Alzheimer Society of Canada, with help from its partners, provides a leading source of research funding for Alzheimer's disease in Canada — currently more than $3.5 million annually — to accelerate the search for finding causes and the cures for Alzheimer's disease.
Canadian researchers supported by funding from the society have said major advances and breakthroughs in understanding the causes and cures of this disease, and in discovering therapeutic treatments to help those who are struggling with the disease. It is that program pillar, the research, which brings me here today. With recent scientific developments, Alzheimer's researchers have a renewed sense of optimism. This optimistic spirit, hope and renewed energy, as well as the needs and desires of those affected by the disease, leads the Alzheimer Society of Canada to support the principles that are embraced by Bill C-6.
We are aware that the bill is complex and filled with emotional overlays, but so are the people who are struggling with Alzheimer's disease. In order for the scientists to have the opportunity to resolve the health issues that my colleagues and I represent, it is necessary to have all the technology at our disposal. This will ultimately be of direct help to those who struggle with Alzheimer's disease and indirectly of benefit to our nation.
The Alzheimer Society of Canada recognizes the potential importance of embryonic stem cell research to developing new therapeutic interventions for Alzheimer's disease and its related disorders. Currently the society is, in effect, living the spirit of the legislation and, therefore, supports investigators in their use of embryonic stem cells as a form of therapy.
The guidelines for stem cell research developed by CIHR and contained in this legislation have been used by the Alzheimer Society of Canada to define the scope of research, which is funded by the society. We do not support the creation of human embryos for research purposes, and we believe strongly that there should be no distinction between the embryonic or adult stem cells.
When approving the policy, the board, along with your considerations, built in a three-year review of their decision given the changing technology and the significant implications of the policy. Legislation is critical in resolving many of the issues that you have heard discussed today and will hear about later this morning. To fill the void, it is necessary for you to provide guidelines and leadership in terms of moving this bill forward.
We thank you for your consideration and would be happy to answer any questions you may have.
The Chairman: Thank you, Mr. Rudin.
Mr. David Simmonds, Former Chair of the Board of Directors, Parkinson Society Canada: Good morning, senators. Parkinson Society Canada is the national voice of the nearly 100,000 Canadians living with Parkinson's disease. We are a national organization with regional partners from coast to coast, and we share a vision of easing the burden and finding a cure through research, education, advocacy and support.
I am the founding chair and a former chair of Parkinson Society Canada, and in that capacity I have had the opportunity to travel across Canada and meet hundreds of people with Parkinson's and their families and professionals in the field. I am 51 years old; I have had Parkinson's for 11 years. I have retired from the legal profession for the past four years as a result of its effect on my cognitive functions.
Parkinson's is one of the progressive disabilities. It does not kill; it wastes. Medication and other therapies just manage the symptoms; they do not halt the course of the illness or cure the condition.
Parkinson's has an enormous social cost. The cost of Parkinson's includes lost productivity from employment, from family and social responsibilities, the cost of medical and residential care and the cost of disability supports.
I have left with the committee clerk a joint publication of Health Canada and Parkinson Society Canada on the economic and social impact on Parkinson's disease, drawn from the ``1998 Economic Burden of Illness in Canada'' study conducted by Health Canada, which has an ISBN number. It indicates that conservatively calculated the annual social cost of Parkinson's, direct and indirect, is approximately $558 million, and that each mainstream Parkinsonian spends approximately $1,000 a month on medication.
The Chairman: Did you say $1,000 a month?
Mr. Simmonds: Yes, according to the Canadian Movement Disorder Group.
We cannot overlook the toll that Parkinson's also takes on family life. It is often tougher on family members who do not have the illness but have all the burdens and have to defer some of their own dreams and expectations as well. Indeed, as our patron the Governor General once said to me, Parkinson's is a disease of the family, so the number of Canadians directly affected by Parkinson's is substantially higher than 100,000.
Parkinson's reaches us all in one way or another. We do not have to look beyond the membership of the Senate for a moving example of both the tragedy and courage that Parkinson's can bring about.
Research into learning the cause and finding effective treatment of Parkinson's is taking place on multiple fronts. Parkinson Society Canada will not drop all other research it supports and concentrate on funding stem cell research, but stem cell research appears to be a threshold that scientists are ready to cross with prospects that span many conditions and many applications. Scientists are telling us that to properly understand stem cells, they must understand embryonic stem cells. For this reason, Parkinson Society Canada supports Bill C-6 insofar as it pertains to the use of embryonic stem cells for research purposes within a principled framework.
The interest of the constituency of Canadians living with Parkinson's and, for that matter, of those already living and yet to be afflicted and those yet to be born who will be afflicted is to find a cure and eradicate the misery expeditiously.
Mr. Chairman, part of the challenge of inclusiveness that is being wrestled with by the Parliament of Canada will now shift to the charitable sector to ensure that we find ways to include those who would like to support Parkinson's research and who have difficulty with some of the lines drawn by the legislation. We must find ways to include them and to fund research that they are comfortable supporting, which may not necessarily include stem cell research.
In conclusion, in my personal capacity may I wish you well in the completion of your task. Contrary to the view I have heard expressed by several parliamentarians, you have, in the research community, not an enemy, but an ally capable of conducting ethical self-regulation subject to principled legislative direction.
The Chairman: Thank you very much for that presentation.
Mr. Nigel Van Loan, Member of the Board of Directors, ALS Society of Canada: Honourable senators, I gather that I am potentially the last in this long parade. I represent a last forlorn voice. Perhaps behind me is the street cleaner, cleaning up behind afterwards.
The Chairman: Actually, we have one other panel after you, but you are the last witness in Ottawa. They will be providing evidence by video conference from three other places in the country.
Mr. Van Loan: I do have the benefit of being last on this panel, which means that I could sit back and say, ``Well done, well said, comprehensively covered and we agree with everything.'' However, I do have a few brief comments, if you will bear with me.
There are approximately 3,000 Canadians living with or, should I say, ``dying from'' ALS. Amyotrophic lateral sclerosis is perhaps better known to some of you as Lou Gehrig's disease. Most Europeans are familiar with the term ``motor neuron disease,'' and perhaps that is a better name because that is what is happening. The motor neurons that drive the muscles are dying, so the muscles become ever less functional. The end result is that the person with ALS becomes completely paralysed, unable to swallow or speak, a mentally alert prisoner within an immovable body, until respiratory failure ends it.
As a result of our current situation of woefully inadequate home care, ALS sufferers spend a small personal fortune in order to remain at home with equipment and care. The normal prognosis for an ALS sufferer is two to five years of this financially ruinous, ever-bleaker existence. Today and each day of the year, two or three Canadians will die from ALS.
However, there are now signs of hope. In the past few years, researchers have learned more about ALS than in all previous time, uncovering several possible routes to a cause and perhaps a cure. The leading hope within those lies with stem cell research.
In 1777, Dr. Samuel Johnson advised, ``...when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.'' For people like my wife Patricia, suffering from a fatal neuromuscular disease such as ALS, death in weeks to a few years is inevitable and, therefore, does focus their attention wonderfully on any potential for treatments and possible cures. We are paying great attention today to the statements from many leading scientists that stem cell research holds out significant hope for treatment, and, yes, possibly even cures for appalling insidious diseases like ALS, muscular dystrophy, Parkinson's and others you have heard about this morning.
This proposed legislation that we are discussing offers both hope and limits — hope for those with ALS and limits on this controversial research. Without such legislation, the Canadian research community is without a regulatory framework. This is a truly perilous situation, in my opinion, one open to just the sort of abuse that people conjure up with the spectre of cloning.
[Translation]
Bill C-6 imposes a significant degree of control over any such research forbidding the techniques used in reproductive and therapeutic cloning. This control adequately ensures ethical, scientifically worthwhile research that has the full promise of providing breakthroughs in the treatment of diseases that are killing thousands of Canadians each year; over 1,000 from Lou Gehrig's disease, for example. While I am here speaking officially for myself, the ALS Society of Canada board of directors, of which I am a member, has indicated its support for the legislation.
In addition, there is still work to be done in forming the governing body and in this matter I would urge that those directly affected by the potential outcomes of stem cell research be well represented.
[English]
Lest you think that I am motivated solely by the prospect of imminent silver-bullet cures, I do recognize that we have a long road ahead, probably many years of intense and dedicated research before a cure for ALS is found. Therefore, allow me on a personal note to bring out one oft-overlooked aspect of the term ``hope.'' At least 10 per cent of cases of ALS have an identified genetic effect: The potential for the disease was passed from parent to child. Indeed, my wife's mother and her three aunts all had ALS.
Frankly, my intuition tells me that eventually we will find that most ALS sufferers are somehow genetically predisposed to the disease. I believe that stem cell research will possibly show us the way to save the next generations, my children and grandchildren, from the ravages of ALS.
This can lead me to but one conclusion here today: Those of us avidly seeking some hope as we grimly battle ALS look to the Senate to show leadership in dealing expeditiously and favourably with Bill C-6.
The Chairman: Before turning to my colleagues, I wish to thank all of you for the effort that you made to come here and to give us your views.
The dilemma one wrestles with in this type of legislation is, first, that there cannot be unanimity, because you have a series of controversial issues on which unanimity in this country or any country would be impossible to achieve. Second, the legislative timetable dilemma that this committee faces is that if we amend this bill, the consequence is, bluntly, that the bill will die. If it were returned to the House of Commons, it goes back into the system over there, and we simply would not get it back prior to the dissolution of Parliament.
The issue that my colleagues around the table have been wrestling with is not the question of whether we think the bill can be improved — I am sure we could each find ways of improving the bill — but rather, to the extent that we try to improve the bill, we will end up killing it.
Even though a number of you indicated that you would like to see improvements to the bill, faced with that trade- off, you would prefer this bill to no bill.
I appreciate your candour in answering that question because we have been wrestling with that issue. We would have asked each of you individually where you stand on that question, so thank you for answering it in advance.
Senator LeBreton: I wish to thank all the witnesses. Who could argue with what each of you had to say. As Senator Kirby said, the three-year review, the regulations and the setting up of the agency will be very important in the next phase.
Mr. Kramer, Mr. Simmonds and Mr. Van Loan made incredibly moving statements, but the question I would like to ask each of you originates with something Mr. Hindle said, that being the role of patient advocacy groups and whether they have been involved enough, how you see your participation in the future in terms of the three-year review and the setting up of the agency, and how you personally and the organizations you represent have been brought into the loop. I would like to have your comments on that.
Mr. Hindle: That was not particularly relevant to my presentation, but given the wording of your question, I will say that I suffered from juvenile diabetes for 37 years. I was lucky enough to receive the miracle of a double transplant of a kidney and a pancreas, so I have now spent five years on the other side of the line. With the islet cell advances that have come out of the Edmonton protocol, which reduced a potential cure from a very arduous surgery under general anaesthetic to what Dr. Shapiro, head of the University of Alberta team, calls the drive-through transplant, the ability to cure juvenile diabetes is clearly before us. Those suffering from juvenile diabetes can see that. The major hurdles to making that cure available to all diabetics is both the question of immunosuppression — because you are still transplanting islets from outside the body — and supply, to which I also referred.
Organ donation has benefited from the tremendous initiative of a former minister of health and the Governor General, and organ donation rates have increased admirably in Canada. However, the sad truth is that we will never attain the necessary level of organ donation to satisfy the needs of those suffering from juvenile diabetes.
It all seems to come together in a very rational and logical circle: that patient advocacy has a door open to participation in the consideration of both the research that is currently being conducted and the administrative review that will occur in the future. I believe we all referred to the fact that the pace of change and the incredible improvement in both technology and scientific research would appear to more than justify this being a part of that review process. Who knows what will happen in three years or five years?
Mr. Van Loan: The ALS Society of Canada has chosen to approach research by magnifying and leveraging our rather small problem — in the sense of the number of sufferers — by partnering with the muscular dystrophy association and the Canadian Institutes of Health Research to ensure that funds are spent on the best neuro-muscular research. We have concentrated to date on advocacy and ensuring that the best research is carried out.
Having said that, we have also on occasion arrived in this very location to advocate on behalf of our population among people such as senators and members of Parliament to get the best legislation moving in areas such as home care and research. Whether we have a role down stream, I expect that if there is a three-year review, we will be chomping at the bit to be a part of it.
Mr. Simmonds: Parkinson Society Canada has been pleased to work cooperatively with the Canadian Institutes of Health Research and Health Canada in the development of the guidelines and the draft legislation. We have a scientific review panel that awards and rates our grants. We would certainly be involved in the development of the scientific knowledge and would anticipate being involved in the three-year review.
In respect of the agency to be established, I do not say that being part of a patient advocacy group necessarily gives one any greater call on wisdom, but it does provide a keenness of interest. We do have access to a slice of society, be it professionals, families or people just genuinely interested in the well-being of friends and relatives, who could be suitable candidates for inclusion in that body.
Mr. Kramer: Thank you, honourable senator, for that very good question. This is something that Muscular Dystrophy Canada has looked at very strongly over the years as well. We devote resources to two strong areas of research and support services for our clients. Several years ago, we conducted a survey of our members across the country who responded loudly that they wanted input into decisions that affect their ability to live in this country as full participating members.
We have a social action committee, on which I also sit, that looks in depth at issues such as this legislation and others that affect our clients throughout the country in terms of the difficulties they face in their day-to-day lives.
Ms. Groetzinger: Perhaps I could go back to the representation on the agency, following Mr. Hindle's comments. I think it is appropriate and necessary for people who will be affected by this kind of research to be part of the oversight agency. I certainly hope that we would be part of that process, as we have been from the beginning of this legislative process. The agency is a very important aspect of the transparency. As well, with the three-year review, I expect that you would see us all back at the table.
Mr. Rudin: Within a public policy framework, the Alzheimer Society of Canada has been an advocate of hope to people struggling with the disease. We have been here before to support all the technology that might be made available to deal with solutions to the problem.
I expect that, through our board of directors, our research community and our constituent groups, we would provide an honest evaluation of the success at the end of the three years. I expect that we would be back here at the table as well providing as honest an evaluation as we can.
Senator LeBreton: The word ``hope'' ran throughout all of your presentations. I would like to thank each of you for your excellent presentations. I believe that there is not much more that can be said.
Senator Morin: We recognize that you all have been involved for many years with this bill. That has had a profound effect on the fact that today we are sitting here near completion. I recognize that your input has been not only before committees, but in meetings with parliamentarians, sitting in on videoconferences and so forth. I have met most of you and I recognize your work on this issue.
Your comments this morning are quite similar to those we heard from scientists earlier on in our hearings. Alan Bernstein from CIHR, Ron Worton, Dr. Weiss and Dr. Bhatia also have a position similar to yours; that is to say, the bill is not perfect and can be improved, but they think it is important that the bill move ahead.
I strongly urge you to get involved in the three-year review. Recognizing that this bill has been before Parliament for four years, three years is a relatively short time. Your voice is very powerful here. I do not think you should underestimate that. I strongly urge you to get started as soon as possible.
The Chairman: To echo Senator Morin's comments, not only is your voice important, but when we hold hearings on the regulations, we will certainly want your input. This is the first time in history that I can think of in which government has agreed to not only put regulations before committees of the House and Senate, but to compel the government to respond as to why they do not implement whatever changes the committee recommends. If that kind of change could begin to have an impact throughout the legislative process, it would be far more dramatic than most of you imagine.
As Senator Morin pointed out, this bill has been around for four years. Because it takes so much time to change legislation, the important parts of public policy are increasingly being done through regulation and not legislation. I am sure a number of departments in this town will not be happy with what will now become a precedent the health department has set, something which most of us will attempt to make sure becomes a precedent in other departments. Your input on the regulations will really matter.
Senator Pearson: Thank you all for your profoundly interesting and important presentations. Two questions came to my mind as I listened to you. One concerns a comment by one of you about the challenge you will face with your own donors if this bill passes. As a result of this bill, you will have to figure out ways to persuade donors who do not necessarily agree with certain aspects of the bill. Perhaps one of you would comment on that.
The conditions you represent are all human conditions as opposed to Canadian ones. I presume that all of you are linked with other societies in other countries, particularly in the United States. Have you thought about the implications of the research that is taking place there as opposed to here? Could you comment on what is happening in England?
Mr. Simmonds: My comment was based on the premise that an illness such as Parkinson's does not necessarily divide according to faith or ethical values. We need to encourage the continued participation of donors who can be assured that research will be conducted only in areas that are consistent with their own ethical values. For example, with respect to establishing a research fund that may include research other than embryonic stem cell research, donors can be reasonably assured that it will not extend to research, the nature of which they find ethically difficult to digest.
We are in touch with a number of Parkinson's research and patient organizations in the United States. In particular, the Michael J. Fox Foundation for Parkinson's Research has been following the developments in Canada with interest. No doubt, when, as opposed to if, the legislation passes, we will be exchanging notes. I am sure that there has been an increase in the extent of research funding going to Canadian researchers from American foundations in the past couple of years. That is not necessarily to do with stem cells but is a general observation. I anticipate that there will be a closer look at Canada once there is certainty on the legislative front.
Mr. Rudin: Regarding donors, I know the senators will find this hard to believe, but it is very difficult to portray the issues of 360,000 people as one voice.
It is rather remarkable that you have heard very similar messages from a number of us who represent hundreds of thousands of Canadians. I think that is also rather important.
In the interests of encouraging people to donate, we have tried to protect through transparency. If people indicate their preference not to have their dollars go toward these kinds of projects, we respect their wishes.
As to other jurisdictions, the Alzheimer Society of Canada is a charter member of a group called Alzheimer's Disease International, which is now comprised of organizations in about 54 countries. We are being looked at with a great deal of interest. The research we fund is really for Canadian researchers. However, I think jurisdictions such as the United States and the United Kingdom are looking with great interest at what we are doing.
Currently, it appears to us that this legislation falls somewhere between the U.K. and what is being contemplated in the United States. American researchers are encouraged by where we seem to be going with the CIHR and the legislation that is before you.
Mr. Kramer: The issue of donor independence is not foreign to Muscular Dystrophy Canada. In fact, we have maintained the practice of ensuring that our donor requests in terms of where their dollars are going are sent in that direction. We pride ourselves in ensuring that our donors and their wishes are respected.
We maintain significant communications with many jurisdictions. In fact, we are aware that U.S. dollars come to Canada for research that occurs here in this country.
Ms. Groetzinger: In terms of international collaboration, the MS society has a lot more interest in international collaboration. We anticipate this will only increase.
I mentioned one of the large collaborative studies we are doing on myelin repair using adult stem cells. Two principal investigators are in the United States, with one principal investigator in Montreal. We anticipate that with a well-understood regulatory framework, studies of this nature will only increase in the future. We are really looking forward to having these kinds of opportunities.
Mr. Hindle: I will address the two points you raised, Senator Pearson. One is that JDRF Canada is an affiliate of JDRF International; and, yes, the largest entity is in the United States. However, the United Kingdom and Australia have large ones as well. Canada is the second largest to the United States in terms of fundraising. We have affiliates in 12 countries and research coordinated through 22 other countries. It is worldwide.
The other practical aspect — and I would please urge you to take it as a practical aspect — may sound trite at first. We are all proud to wave the flag, but with particular respect to juvenile diabetes, Dr. Banting and Dr. Best made probably the most important advance with regard to treatment over 80 years ago. They were Canadian. Dr. Rabinovitch, in the late 1980s at the University of Alberta, first attempted the islet transplant procedure. Dr. Shapiro and his team in the late 1990s found a way to tweak the immunosuppression combination, which is being given to patients, and that is being repeated in 12 different centres around the world and along parallel timelines.
JDRF Canada is the second largest contributor, behind the United States, to the research fund of JDRF International; yet, I could not tell you how many years it goes back that JDRF International has funded far more research in Canada than JDRF Canada raises in research dollars. It says something when an international panel that evaluates research potential continues to pour money into Canada. Without sounding trite, we have a viable and practical opportunity with our tremendously talented and creative researchers as a group here in Canada, and that should not be taken lightly.
Mr. Van Loan: Let me address the human condition you raised. ALS is worldwide. We have links with worldwide communities dealing with this condition, particularly with ALS America, which, as you say, would not surprise you.
What might surprise you is how successful ALS America and ALS Canada have been at funding research jointly. Through the Canadian Institutes of Health Research, we have an able to jointly fund several leading studies in Canada from American and Canadian sources.
I would also add that the research is being conducted worldwide and we are monitoring it. Indeed, the director of research at ALS Canada recently attended an international conference to monitor what was ongoing throughout the world. We are trying our hardest on behalf of all Canadians to keep track of developments in the field.
I do not know if Dr. Worton waved the flag. I will wave it on his behalf. In my opinion, Canada is a leader in stem cell research and should be proud of it.
Senator Pépin: Coming from an advocacy group myself, I know how difficult it is to keep alive the spirit, energy and determination that you have. I think it is wonderful. I want to thank you for your presence here this morning and for the presentations from each group. As Senator Kirby said earlier, we are hoping that your input will be part of the revisions of the bill.
Senator Cordy: I also have a comment. I want to thank you so much for what has been compelling evidence this morning. As Senator Morin said, do not underestimate the value of your words to us this morning. You are representing hundreds of thousands of Canadians who either have the diseases that you represent or who are affected by them. One of you talked about the effect that these diseases have on family members.
The question that was going through my mind before you started your presentations was this: Should Bill C-6 become law? You have all answered that question very clearly this morning.
As Senator Pépin and others have said, we look forward to seeing you again before our committee.
The Chairman: I thank all of you for coming here this morning.
I will do a slight promotion for Mr. Rudin. As you know, the committee will be returning to our major study of reforming the mental health care system. Your organization was kind enough to appear before us early on. We would urge you and all your colleagues in similar disease-type organizations that involve mental illness of any form to continue to provide us with the kind of help that you have to date. In spite of the fact that Parliament was prorogued for a period of time and that it may be dissolved for several months, the reality is that we are continuing to do and will continue to meet the timetable that we laid out. When you are talking to your colleagues in the mental health community, tell them that we do need their ongoing help. I thank all of you for appearing before the committee today.
Honourable senators, our next presenter will be Madeline Boscoe.
Ms. Madeline Boscoe, Executive Director, Canadian Women's Health Network: Thank you very much for the opportunity to appear before you today. The Canadian Women's Health Network is a national, voluntary organization of individuals and groups working to advance women's health in Canada. In our view, this bill is a critical turning point for the health of Canadian women, children and their families, and for society at large.
Bill C-6 has been a long time coming, but it is a bill that we should be very proud of. I appear before you to urge you to pass this important legislation. Indeed, I suspect that many Canadians would be surprised to learn that the legislation and the regulations are not already in place, given the vitally important matters that this legislation covers.
At long last, we are defining the principles and values that guide the management of reproductive technologies and a transparent and accountable process. The bill is an important component of a comprehensive strategy for the optimal sexual and reproductive health of all Canadians.
I should let you know that I started working on this file in the mid-1980s. I actually date my children from my involvement with this issue. I work part-time for a community health centre here in Winnipeg called the Women's Health Clinic, and we organized a series of educational discussions and research around women's experience with these technologies, which led to the formation of the Manitoba Working Group on Women and New Reproductive and Genetic Technologies. We lobbied for the royal commission and responded to the royal commission and the numerous drafts of the bill that came out before the public.
I should also advise that I am also Co-chair of Health Canada's Advisory Committee on Reproductive and Genetic Technologies, so my remarks and my support for this bill come from all of those experiences and knowledge. I feel confident that those groups and individuals are very pleased with the bill that is before you today, and we all urge you to pass it.
You have been hearing a lot around the issues of commercialization, and I wanted to particularly note our support for prohibitions against both sex selection and the commercialization of human reproduction. Issues like ovum and sperm donation, embryo donation and preconception adoption agreements, which are often described as surrogacy, pose potential risks of harm, both psychologically and socially, to men, women and their children. Financial inducements can and do lead to exploitation of the vulnerable. I give you the example of the sale of human body parts in other parts of the world. Our values here in Canada do prohibit us from allowing compensation for blood, body parts or bone marrow, and we ask that the creation of children not be held to a lower standard.
I have been asked particularly to comment on the agency and health reporting, which I am happy to do. It is a critical component of this legislation that the agency be created. It finally creates a public face for the Canadian public to interact with both the regulation and debate about these technologies.
One of the most important components for me is the aspect of the agency that not only deals with licensing and quality standards of care but also has a duty to look at the issues of consultation and education, activities that are all too lacking in the disappearance of public comments in debate and education of civil society. I believe that the agency, through its consultation and education programs, can and should create opportunities for Canadians to share their concerns, learn from each other and from the new research. This activity is as important as the ongoing management of reproductive technologies.
The bill also allows for the collection of a variety of information from people using these systems. This is very important because most of this care right now is in the private, for-profit sector, so our regular systems of collecting data are not available. We strongly support the provisions of the bill that allow the agency to disclose identifying information in confidence to physicians in cases of medical emergency, for example, the issue of a need for a bone marrow transplant. As importantly, we also support the creation of a system where identifying information would be released to offspring donors when the person donating those gametes gives consent.
In closing, I would reiterate that this is a good and in many ways a visionary piece of legislation that is long-awaited and urgently required. We need to get on with the work. As I said at the beginning, this legislation is only part of an overall strategy, one that the royal commission recommended; that is, a renewed reproductive health strategy. We need to be investing in the prevention of infertility, not only sexually transmitted disease, but addressing environmental causes. Of particular concern to us is the number of women who are postponing childbearing due to the need to protect their abilities to compete equitably in society by completing their education and developing a strong work history before becoming pregnant. We need to develop healthy public policy that supports the parenting of young children. I am acutely aware that for most women control of fertility remains their major issue. One in six children in this country still live in poverty, and groups like Big Brothers and Big Sisters have long waiting lists for children looking for mentors.
Many of the services in this bill are currently not within the scope of medicare, and this is a shame because it means that only those who can afford it can access it, creating yet again a systemic inequity in our society.
All of these issues are part of a comprehensive reproductive health strategy. A recommendation from the Senate committee in this regard would be as welcome as passing the bill.
The Chairman: Our next speaker is Dean Michael Prince. What faculty are you acting dean of?
Mr. Michael Prince, Acting Dean, University of Victoria: That is a good question. I am Acting Dean of the Faculty of Human and Social Development, a rather unique name for a faculty in Canada. It includes a series of professional schools: nursing, social work, child and youth care, public administration, which is my own background, health information science, medical informatics, dispute resolution, indigenous governance, and policy and practice. We have an interesting collection of public sector-oriented professional practice schools and programs.
The Chairman: I should tell you that as I look around the table, two or three of us here have been deans or assistant deans. We have never heard of such a heterogeneous group of people. Knowing how difficult it is to get people in one field like medicine to agree, we have not the foggiest notion of how you can possibly do your job. You may want to just keep the acting title.
Mr. Prince: That does provide a certain safety. You heard the phrase ``herding cats'' as it pertains to university.
My own background is in social policy, public administration, Canadian government and political science, so my remarks will focus on the agency itself and the related matters of governance, the role of the Minister of Health, issues of accountability and public transparency.
I appeared before the House of Commons Standing Committee on Health back in 2001, testifying on the then draft legislation by then Minister of Health Allan Rock. That was the first iteration of the legislative proposal that included content on an agency. You may recall that previous bills presented to the House did not contain any materials in the draft legislation on the regulatory agency. Only in the last two to three years have we had an opportunity through these kinds of hearings and draft bills to look at the agency.
I am pleased to see that some of my earlier remarks to that health committee, back in 2001, were picked up. I am one who endorsed the idea of a semi-independent or arm's-length agency located outside the federal Department of Health but reporting directly to the Minister of Health and, through that minister, to both Houses of Parliament.
I am pleased with what is in the bill. I see an opportunity for the Senate to strengthen the bill. I suggest you give serious consideration to a series of minor, friendly amendments to strengthen this bill and enhance accountability, parliamentary scrutiny and public transparency. With the new Prime Minister's focus on the democratic deficit and the importance of both Houses of Parliament, this bill can serve as a wonderful opportunity early in 2004 to speak directly to those themes.
I could either stop right now, Senator Kirby, or go into more substantive clause-by-clause comments. I am at your direction.
The Chairman: Can you give us the essence of what the amendments would be designed to do?
Mr. Prince: Some of them are quite minor, but they deal with two categories. Some look at existing sections in the bill, for example, by adding, tweaking and clarifying things.
The other category suggest additional language or new clauses, for example, amendments that say the agency should submit an annual report to Parliament. I see no language in the bill that speaks to that matter. Another amendment would be that the agency present a strategic plan every three to five years to the Minister of Health for his or her approval and that those strategic plans be routinely laid before both Houses of Parliament. Another amendment would be to clarify that the agency is subject to audit by the Office of the Auditor General of Canada. There are those kinds of accountability mechanisms.
There are other amendments that deal with equivalency agreements, ministerial decisions on reports by the Senate or the House of Commons, the advisory panels, the membership and composition of the board itself, and the participation of deputy ministers at board meetings. There are a variety of more specific amendments that I would be happy to address later on. My interest this afternoon is to speak to many of the governance and structural questions.
The Chairman: Our final speaker on this panel is Dr. Robin Walker, from the Children's Hospital of Eastern Ontario located here in Ottawa, but he is with us today via teleconference from Toronto.
Dr. Robin Walker, Children's Hospital of Eastern Ontario: I am, as you heard, Dr. Robin Walker from CHEO, a professor of pediatrics at the University of Ottawa. My specialty at CHEO and also the Ottawa Hospital is neonatology, the intensive care of newborn infants. I am also President-elect of the Canadian Paediatric Society. However, I want to stress that although I was identified to the committee by the Canadian Paediatric Society, the society has not developed an official opinion, statement or policy on the bill. I am here, therefore, speaking as a neonatologist and a paediatrician about issues relating to newborns but as an individual. These are my opinions only.
My research is in knowledge transfer, that is, getting science to the bedside of the community, and evidence-based practice improvement, which is using science to improve practice. Like Michael Prince, I have an interest in medical informatics. I am the co-leader of a large research group in Ottawa that is developing tools to support decision making in various health situations based on artificial intelligence technology.
None of that, as you will recognize, has much to do with assisted human reproduction, so my expertise on this issue is largely as a neonatologist whose practice is with newborn infants. I have become aware of some of the neonatal impacts of assisted human reproduction.
We have good evidence that certain types of assisted human reproduction are associated with some increased risks to newborns. Certain types appear to be associated with an increasing risk of congenital anomalies, or genetic syndromes, what one might term birth defects. There is definitely an increase rate of twins or multiple births after certain types of assisted reproduction. That is perhaps the most important risk to speak to because the increased risk of multiple pregnancy leads to an increased risk of preterm birth and, particularly, an increased risk of extreme preterm birth, namely, the tiniest babies, some with the highest death rates and some that cost the most money in the short term in neonatal intensive care units and in the long term for those with long-term disability.
Any discussion of assisted human reproduction, I would contend, must include at least recognition of pediatric costs, in dollars, in respect of the long-term needs of these children, and the financial, psychological and other such costs to families.
The largest issue is extreme preterm birth; that is, infants less than 28 weeks gestational age. They are more than 12 weeks early and have a high mortality rate, long stays in intensive care and an increased long-term risk of neuro- developmental problems.
I would note in parentheses that preterm birth is increasing in Canada at this time. Canadian data suggests that about half of the current increase in preterm birth is accounted for by the increased use of assisted human reproductive technologies. Other factors contribute as well, including the fact that mothers and fathers are having babies at an older age. I might add that I have a four-year-old boy. There is also an increased use of elective preterm birth for medical reasons.
Let me speak to some practice issues. Some of the effects I have spoken to are relatively amenable to changes in practice. For example, with respect to in vitro fertilization, if there is a reduction in the number of embryos introduced, the risk of a higher order of multiple births — quadruplets or more — is significantly reduced. As an example, I would point out that in a single year at the Ottawa Hospital, we had four sets of quadruplets. As a result, the fertility centre in Ottawa changed its practices and births of a higher order than triplets have been virtually eliminated. We still see a fair number triplets and many twins, but fewer quadruplets. That is important because the higher the order of birth, the more preterm those births will be.
In conclusion, I would like to speak about some of the pediatric needs, most of which are addressed by this legislation or by the proposed agency. Again, I stress that these are my opinions and not those of anyone I work for on a paid or voluntary basis. While there is a need for action toward a regulated and regulatory framework — after all, the royal commission recommendations were made a long time ago — many ethical guidelines are in place already, such as the CIHR guidelines on stem cell research. We are not in a total legal or ethical void. Nonetheless, there is no question this legislation is needed.
I will speak to only one or two specifics to save time. First, I strongly support Madeline Boscoe's point about commercialization. Children generally have not benefited or do not benefit from the commercialization of health care. We can follow the example of and learn from other countries that have already prohibited commercialization. Children do benefit, however, from ethical research and therapy. While the legislation must, as it does, address ethical concerns such as the use of human embryos, it should not prevent ethical research such as stem cell research under the CIHR guidelines. I also believe it should not ban ethical therapy, which might, for example, include therapeutic cloning and related research to develop those technologies. Such therapeutic cloning should certainly be a tightly controlled activity, but I would support an amendment to remove the ban.
In regard to the agency, children do need oversight of assisted reproduction programs to ensure, among other things, that best practices are followed to minimize the preventable pediatric risks I have suggested.
My bottom line is that the proposed legislation should go forward. It represents, on the whole, an excellent balance between ethical concerns and practicality. I would support an amendment to commit therapeutic cloning and relevant research, but only as a controlled activity, and I would certainly look forward to seeing the proposed agency overseeing programs to ensure that practice issues important to children and newborns are addressed through licensing, inspection of programs and so on.
The Chairman: I have a question for Dean Prince concerning his various governance proposals.
The practical dilemma that this committee faces — and that is why I am interested in your answers — is that any amendment to this bill, however minor, is very likely to kill the bill in the sense that the bill then has to go back to the House of Commons, and, as we saw, it took the House some three and a half years to get the bill over to us. The House, at least if you believe what you read in the papers, will be dissolved for purposes of an election sometime in the next few months, which would that mean after the election we are back to square one.
My question is to everyone to the panel, but particularly to Dean Prince because of the issues he raised on governance. Since the practical choice we face is an unamended bill with the hope of improving it either through the regulatory process when the regulations come before us or when the three-year review comes before us, is your choice to amend the bill, and thereby kill it, or to take the bill as it is and hope that we improve the process in a regulatory phase and in the three-year review?
Mr. Prince: That is a good question. Let me be clear. This is not a strategy of wanting to kill a bill by appearing to support it and then suggest a bunch of amendments. I am aware that the electoral clock is ticking. If that choice is as stark as you have presented, then I would say support the bill going forward without amendments to avoid the risk of killing the legislation now.
It has been a long time since 1993 and the royal commission report and we have had a series of draft bills before, so, if nothing else, Mr. Chairman, my hope would be to get on the record today some of these issues and to encourage you and your committee to be keenly aware of them. I know you are already aware of some of them, but as your role in your community over the coming year or two, I would urge you to make sure these issues do not quietly fade away. We do not need vague promises from officials that these issues will be addressed in regulations and then never come back to them.
Some of the issues, because of the ethical nature of this area, are so important. As Madeline Boscoe and other witnesses have said, there is a public education function and a communication function in this field probably only rivalled by the biotech area. If you look at the Canadian Biotech Advisory Council, they have played an enormously important role in starting to educate Canadians about biotechnology. There is an equal challenge here with respect to requirements. That is the long answer.
In summary, I would like to flag some ideas and recommendations for you today, but I respect that as senators you must make the decision of not wanting to be seen as obstructing the bill. I do not want to be seen as obstructing the bill either. I would rather see a bill pass this spring.
The Chairman: By the way, the stark choices, as you put it, that I painted for you were unfortunately realistic ones. My colleagues and I have a not-insignificant degree of frustration with the fact that the bill was in the House of Commons for some three and a half, almost four years before it came to the Senate. That is an issue for us to deal with other people on, but to say that is outrageous is an understatement. Thank you for your comment on what I regard as our stark choice.
Ms. Boscoe, you were very clear: You are in favour of proceeding with the bill in its current form.
Ms. Boscoe: Yes. Perhaps it would be helpful for Dr. Prince and the committee to know that the ideas that he suggested are in the minutes in the Minister of Health's office as concepts that the agency should undertake as part of its activity. These recommendations arise from the minister's advisory committee on reproductive and genetic technologies.
I also feel confident that the staff working on this matter within the department has thought about the issues, such as the strategic plan and an annual report. I share that with you, if it of any help to this committee.
Dr. Walker: I have a very similar comment. I was aware in presenting that that choice was present, so I have had plenty of opportunity to think about it. I am obviously not the only person to suggest an amendment to the section on therapeutic cloning. You have heard this from Alan Bernstein of the Canadian Institutes of Health Research and from Ron Worton of the Ottawa Health Research Institute. There is no question that the choice before us is clear, and I would not like to see the bill killed because of a need for relatively minor amendments.
Senator Morin: It is ironic that this bill has as its main objective to protect the health and well-being of children and of women and that you should be the last witnesses we hear. You should have been the first witnesses because I think this is extremely important. Actually, we have heard very little about children. This is the first time we have heard about children who are born as a result of these services, and also about the protection of women. Dr. Walker did mention the grave risks that these children run, especially with regard to the diseases and conditions associated with multiple births.
I would like to address my questions to Dean Prince. I was told that when the Auditor General appeared before the House committee, she stated that the agency fell under the Auditor General Act and that she intended to control the agency's operations. Concerning the annual reports and strategic plans, I was affiliated for many years with the Medical Research Council of Canada and then the CIHR, which are also arm's-length organizations. Through the Main Estimates process, I remember that we had to prepare an annual report to Parliament. We were also involved, as are the other departments, in strategic planning. That, as you know, is an operation that all departments do regularly.
How do you react to these two issues, the first concerning the Auditor General and the other the fact that these two arm's-length organizations were involved in the type of operation you are recommending?
Mr. Prince: I am glad to hear the comment of the honourable senator that the Auditor General made that remark. I see in the bill that this proposed agency would be listed under Schedule II of the Financial Administration Act. I hope that would clarify my earlier comments. I was hoping that in the body of the bill there would be a specific clause around the audit function and responsibility. It is buried at the back of the bill, on about page 30, as a minor thing. That does not communicate effectively to parliamentarians or the public with regard to the audit link from the agency to the Auditor General. The agency, as proposed, would fall under the Auditor General's scope of responsibility.
On the subject of annual reports and strategic plans, the honourable senator is absolutely right. These have become standard, good management practices of the old medical research council or other Crown agencies at the federal and provincial level.
As Ms. Boscoe said, I am hoping that Ian Green, the Deputy Minister of Health Canada, and Minister Pettigrew will be aware that these are standard best practices. My hope is that we do not need legislation at this stage to ensure that once the agency is up and running, hopefully in 2005, those best practices will become part of the standard operating procedures of this new agency.
Senator Chaput: Mr. Prince, my question is in regard to your comments about the structural questions that you have raised. They reminded me of a comment from the Privacy Commissioner. She spoke about confidential information. One of her comments was that the success of this bill would depend on the policies and procedures that will be put into place to protect the confidentiality of information.
Listening to you and your concerns about annual reports, the strategic plan and the audit, I believe that those issues will be put into place by means of the policies and procedures that will be developed. The bill will be submitted to a three-year review, and I am sure that this committee will follow the work very closely. I am sure that you, also, will do that. Hopefully, your concerns will be looked into and will still allow us to pass the bill as soon as possible. Do you have any comments in that regard?
Mr. Prince: I like clauses 14 through 19 of the bill that deal mainly with issues of privacy and access to information. Perhaps the three-year review would enable an equal emphasis on notions of public education, communication and the publicity and transparency operations of the agency.
As an example, clause 33 of the bill refers to empowering the new agency's board of directors to establish advisory panels of outside experts to work on issues that the board feels are important. There is no mention of the appointment criteria regarding who would be on those advisory panels. That will be worth thinking about down the road.
There is no mention that there would be public disclosure of any reports done by these advisory panels. A simple amendment under clause 65(1) would be to add some public disclosure requirements. There should be a general principle of transparency in the areas of reports and activities that deal with policies and procedures. The bill quite properly spends a great deal of time and careful thought on protecting privacy and confidentiality.
On the subject of board membership, I would like to see at least half of the board comprised of women. I know that subject was raised earlier in the House. Previous Minister of Health Anne McLellan made a promise on that subject in terms of the regulations.
A simple amendment under clause 26(2) of the bill might be to state that the membership of the board would be guided by both the objectives in the bill and the principles. Clause 2, in which the principles of the bill are enumerated, quite properly points out that this is a policy area that is significantly and particularly important to women in Canada. This bill is important to children, but there is an important gender dimension that needs to be addressed somewhere else in the legislation.
Those are some issues. I quite agree with the honourable senator about the importance of confidentiality. That is absolutely integral to the effectiveness of this law.
Senator Roche: It is my understanding that this bill would allow individuals employed by or connected with bioresearch firms to be on the board. I hope you will correct me if I am wrong. If I am right, do you think that this raises any problem, for example, those charged with regulating research having a financial interest in that research, recognizing that we will probably not amend this bill for the reasons that Senator Kirby referred to a moment ago? The committee might have some observations. Do you have any guidance for us in the writing of observations so that we can ensure that our views go forward to prevent a conflict of interest in the composition of the members of the board?
Mr. Prince: If we look at previous bills in this area that have been presented to the Houses of Parliament over the last eight or nine years, they contained better language on the question you are raising than does this bill.
Clause 26(8) of this bill is the only specific language that talks about who is not eligible to be on the board of directors. It is a short and narrow piece of language about whether one is a licence holder, applicant or director of a licensee. That language should be much more sensitive to this issue.
In terms of the integrity of the process and the whole licensing process, if we look at equivalent legislation in the agriculture area, pest control and pesticides in the industrial area, much stronger language is used to speak to this concern.
This bill is about children and families and about life and birth, but we all know that behind this are also some major economic interests in industrial sectors. Relationships are sometimes problematic between universities and industry regarding sponsored research. We need to be quite honest and prudent in terms of safeguards.
In the short term, perhaps this subject could be addressed in the regulations. At the three-year review, your committee and others could return to this matter and urge some strengthening of the law.
Thank you for raising that point. It is an important question.
The Chairman: You cannot see this, but our colleagues around the table are absolutely nodding in agreement with you. I am delighted Senator Roche raised the question.
By the way, the other thing you cannot see around the table concerns the comment on the board being composed 50 per cent by women. Just so we are clear, the women on this committee outnumber the men two to one, not just on this process but throughout our entire health care study.
Senator LeBreton: We were all nodding our heads.
The Chairman: Believe me, they were all nodding.
Mr. Prince: Perhaps 50 per cent is too low, then.
Senator Roche: On the topic of women, reference was made to a statement by Minister McLellan, when she was Minister of Health, concerning the intention to provide a composition of the board of 50 per cent women. Was that statement not made in the form of a letter that is binding on her successor?
The Chairman: I do not know where that statement was made, but we have had this discussion with ministers before. Letters from ministers to committees are not binding on their successors. In fact, that has been an issue of some dispute with incoming ministers. I can recall one case in which we agreed that until the commitment we had extracted from the previous minister was honoured, we would simply sit on a piece of legislation. That resulted in getting a greater degree of reasonableness than we might have otherwise received.
Senator Roche: When I was reading the material as it going through the House of Commons when they had those difficulties, it seemed to me that it was a good-faith intention by the relevant government minister to do so.
The Chairman: I believe it was.
Senator Roche: If there were not to be a composition of 50 per cent women, would we consider that to be a violation of a good-faith agreement?
The Chairman: When the regulations get here — and they have to be approved by this committee — that gives us some not insignificant leverage. We should make that point in our observations as well.
Senator Pearson: My questions are for Dr. Walker, which will not surprise him.
You and I have had discussions on this matter before. I would like to have on the record some comments about whether there is a growing body of coherent research on children who are born from assisted human reproduction.
In thinking about that question, would you like to put on the record some avenues of research that you would like to see assured as we move forward, particularly as we begin to institute a regulated regime?
Dr. Walker: No researcher would ever turn down an opening to indicate what research he thinks should be pursued.
In response to the first query, there is no question that there is a growing body of research in a couple of important areas. One relates to the issues of preterm birth and particularly extreme preterm birth. The concern here is two-fold. The first is that we obviously have an expensive health care system that is not getting any cheaper, and extreme preterm birth is responsible for significant costs. In fact, the Ottawa Hospital is one of the few hospitals that has produced data on the cost of care in the hospital setting. We have very little data from Canada on ongoing costs, such as the costs of caring for children who are disabled as a result of extreme preterm birth. However, the data we have from the U.S. and the United Kingdom, among other settings, suggests that these costs can be quite huge.
Cost is one issue, but there are costs other than financial. The cost to the families involved can be significant. Obviously, there are reasons perspective parents choose to accept assisted human reproduction. They want children. However, presumably they want and usually would expect healthy children without disability. The effect of having twins or triplets who are very preterm and may be disabled for a very long period of time can be devastating for a family.
The second issue is the actual impact on resources. The impact on resources in the hospital setting, while significant, is somewhat offset by the decreasing need for neonatal intensive care in some other areas. There is not good evidence that the need for neonatal intensive care is increasing, so I will not be able to justify increased numbers of neonatologists on this argument. There is clear evidence, however, that following discharge from hospital the number of infants in the community who are medically fragile, meaning that they have multiple medical conditions, or in some cases technology dependent, meaning that they are actually dependent on various forms of technology for their continued well-being, and the resources they need are in fact increasing. This has a significant fallout because services for such children after they leave hospital are much less well developed than the acute care services. It is a theme you are well aware of: The need for home care, for care in the community, for multidisciplinary services and so on, that persist not only through childhood but throughout the life of the children.
The other area in which there is a growing body of research relates to the areas that Ms. Boscoe has eloquently covered; that is, the psychological effects of such things as surrogacy. I am not an expert in those areas, but there is certainly a growing and fairly coherent body of research around those effects. They are not unimportant.
On your second question, I believe that there is a major need to continue looking for the causation of and the ways to prevent preterm birth. It is one thing to say that if you have several fetuses, you are born preterm. We do not at this time have good techniques for preventing those preterm births. The medical approach — drugs — does not work. Much preterm birth is associated with socio-economic factors and demographic factors. We have not learned how to intervene to prevent their effects. Issues related to stress may be relevant. We have simply not learned how to prevent preterm births, so I believe that is an important avenue.
Second, recognizing that we have come a long way in treating preterm infants in the hospital setting, there is a pressing need for research into how to better care for and ameliorate the long-term effects of the inborn preterm.
Essentially, we need prevention on the one hand and much great greater attention to the long-term needs of these children on the other hand.
Senator Pearson: I remember that in one conversation we talked about unusual anomalies and whether it would be useful to ensure that we look into whether there are anomalies associated only with these techniques so that parents can be better counselled as they proceed.
Dr. Walker: One of the difficulties is that whereas preterm birth is relatively common — about 7 per cent of all births in Canada — and is relatively predictable when there are twin or multiple births, the rate of congenital anomalies in association with assisted human reproduction is very much lower. It does appear to be somewhat higher than the background level in unassisted human reproduction, but it is a modest order of magnitude higher. One can easily study preterm birth in a single centre such as Ottawa that has a lot of preterm births. It is much more difficult to study the causes and associations of congenital anomalies that occur in the normal population and may occur somewhat more frequently in children born after certain types of assisted human reproduction. It is a much tougher area of research. That is not to say that it is not important. I mentioned that we have come a long way in treating preterm babies for the problems related to prematurity. We have much further to go in learning how to treat congenital anomalies — birth defects, if you wish — in many cases after birth. Therefore, prevention is potentially very important.
I do acknowledge that this is a difficult area of research that will need large populations, probably on a Canada- wide basis, to be able to effectively intervene.
Senator Pépin: Dr. Walker, you mentioned the importance of preterm birth, as well as psychological treatment for children and families. Do you have any statistics on that? Can we say that the problems that these families or children have are similar to the ones adopted children had many years ago?
Dr. Walker: There is certainly some similarity. Again, I stress that my expertise is more medical than psychological. Perhaps this is an area where Ms. Boscoe may have some contribution.
There is some evidence that some of the psychological problems are similar. The evidence suggests that, for example, the longer-term psychological impacts of surrogacy may be somewhat different.
Interestingly, as an aside, I speak as an adopted child. As much as my colleagues might dispute this, I am happy to say that I do not feel I have any major psychological problems as a result.
There are some similarities and some differences. Some issues are specific to assisted human reproduction and some are specific to surrogacy. There are areas where there is an overlap of the long-term effects of adoption.
I am not sure if that fully answered your question.
Senator Pépin: Yes, that helped me very much.
Ms. Boscoe, as Dr. Walker mentioned, you may have something to say about the children and the families who suffer from psychological problems. Do you have any concerns about that? What do you think about it?
Ms. Boscoe: I will start by making a couple of comments, the first building on Dr. Walker's comments. One of the major drivers of these multiple births is the pressures on families that are paying a fee for service right now into a private for-profit system. In that case, the issue of going through a cycle is so costly that they are constantly balancing the number of embryos being inserted with the hope that a couple of them take or implant. Many times, of course, none of them implant, and they have to go through a repeat cycle. This becomes a financial issue for the families.
I am hoping that — and this comment is partially related to my comments about how this needs to end up in the public sector — families will not be making choices that go against the interests of both their health and well-being and their future children based on a financial driver.
I do not know if Dr. Walker would like to comment a bit more. I am hoping that will happen.
Related to the issues surrounding psychological impacts, I used in my remarks the term ``preconception adoption agreements.'' The concept in our society — and I think you have heard testimony to this effect — that these women are not mothers is a denial of what is really happening. These mothers have these experiences.
Many years ago, I started an adoption support group for what we at the women's health clinic thought would be young women who were considering giving their babies up for adoption. I was struck by the number of women who had given up their babies 5, 10, 15, 20 years ago and who had this unresolved grief. They had no place to go. Dr. Walker's comments that these families function like families with adopted children is true, which is why you have had adults born through artificial insemination by donor come before you and say, ``I am trying to find out more about my genetic history, my biological history and my biological parents. Those rights are denied to me in a way that they are not to adoptive children.'' Those psychological issues are there.
This legislation also to unpack the concept that this is secret, that this is something that should be hidden. We need a public debate and a public system that protects the rights of the children born through these processes. Adults who may consider allowing the adoption of their embryos or donation of their gametes need good, independent counselling that will help them understand and explore this territory more than they have right now.
I hope that has answered your question.
Senator Pépin: Mr. Prince, I want to thank you for mentioning that one half of the agency should be composed of women and the other half by men. Coming from you that comment is much stronger than if it came from all the women on this committee.
Mr. Prince: Thank you, Senator Pépin. I have two daughters and a lovely wife. I live in a world of women. Given the professions I work in, over 70 per cent of the faculty at the University of Victoria are women. I live this reality every day.
Clause 2 of the bill sets out the principles of the bill. That is an improvement over previous bills where there was a preamble with this kind of language. It is at least now in the main body of the bill in clause 2. Let us ensure that we actually walk the talk.
The Chairman: We are certainly in agreement.
Senator Cordy: Ms. Boscoe talked about the collection of information and the information that Canadians will have and should have before them to make informed choices. Dr. Walker spoke about the information we do not have currently.
Will the passage of Bill C-6 give people more information, information that we currently do not have, because there are no regulations in place for private agencies that currently exist? Will the passage of Bill C-6 give us more information so that families can make more informed decisions before they choose to undergo treatment to have children?
Ms. Boscoe: I feel very confident about this. One of the frustrations of having these services in for-profit private agencies is that our normal methods of collecting data and information about outcomes, effectiveness and the success rates of ``facilities'' are hidden. They are not in a peer reviewed, publicly accountable system. The licensing and the information systems from which we will be collecting data, including the health records of the children born through these systems, will finally allow us to track and report back to Canadians and to people who are considering using these technologies. Right now this information is not readily accessible. We often look to Britain, or to other jurisdictions where legislation like this is in place, to give us guidance on what could be happening here in Canada.
Dr. Walker: I could not agree more.
There are two ways in which this bill would improve our information. First, the passage of a bill, or even an amendment to a bill, will often have a powerful public education effect. I think that the passage of this bill would almost certainly lead to increased interest, obviously media interest, and public education on some important aspects.
I would like to think, for example, that couples considering in vitro fertilization were being counselled consistently about the issue of increased risk of preterm birth and, indeed, had information that would allow them to make good choices about the number of embryos to be introduced. The way the system is currently organized, this may be happening now, but we certainly do not know that. I know it is happening in certain responsible centres with which I am more familiar, but I do not know whether it is happening universally.
The second thing, of course, is that the creation of the agency is a wonderful opportunity to ensure that we are collecting data on the procedures being done and to whom and when, and on the outcomes, and sharing that information, as well sharing the information about the centres. At the present time, the patchwork fee-for-service system clearly does not allow that kind of information to be given either to the public, in terms of public accountability — and Michael Prince has spoken to those issues — or to the couples considering various forms of assisted human reproduction.
None of this is to say that I am looking to discourage couples from seeking assisted human reproduction — only that they need good information to make good decisions and that the public is entitled to a level of accountability about the centres involved in this kind of activity.
Senator LeBreton: I have a question for Dr. Walker on the issue of counselling. It came to me when I was listening to the testimony of some of the offspring of donors.
Is there enough counselling given to donors? Are people who donate eggs and sperm counselled enough so that they are fully aware of their responsibilities to potential offspring?
Dr. Walker: That is a very good and difficult question. I may not be the best person to speak to that issue because I do not work in an environment where donors are counselled. My work, obviously, is with the offspring, albeit usually at a very early stage of their lives.
In what I have described as the responsible centres — not to imply that there are necessarily irresponsible ones — some make a particular effort to practise responsibly and provide good counselling. What I know about them, however, suggests that far more counselling is directed toward the couples, who obviously are making some important choices, than is likely directed toward the donors.
I think this is likely an area for exploration and improvement in practice, which may come about if we have a regulated system under the aegis of an agency with regulatory authority, rather than the current patchwork of, if you like, private centres.
Senator Pépin: We were told that many donors are young, and perhaps many of them are students. I think it is important that there is accountability. We must tell them that they have to take responsibility, that if a child is born, he or she may later on want to know his or her father. As well, I would give counselling to donors because they need to realize the responsibility of what they are doing.
Dr. Walker: We mentioned before the parallels of some of these issues to adoption. I mentioned that I was adopted. I have, in fact, found and have often spent time with my birth mother. I have not found and will never find my birth father, who was out of the picture long before my birth. I know his name and nothing else. One of the issues is that I do not have any genetic history on the 50 per cent of my genes that came from the male side. That is more important for some things and less for others. We know, for example, that intelligence is mediated only by the expression of genes gained from the mother, something about which the women on the committee will not be surprised, and fully justifying the 50 per cent-plus ratio on the board of the regulatory agency. However, the fact is that not having that information is significant in health terms.
At the very least, there is a responsibility to provide information, even if it is anonymous, with regard to, for example, health issues and potential genetic issues for the offspring. In the situation of adoptive children now, that is much more usually available than it was 15 or 20 years ago.
For these children, at this point in time, that information is often not available and is a significant problem for the offspring of these births.
The Chairman: I thank all three of you. I am not so sure about thanking Dr. Walker. The grief he will inevitably have imposed on the male members of this committee down the road, particularly as we start to deal with mental health and its associations to intelligence and so on, will be considerable to your chair.
I thank all of you for coming today. You have helped us solve one experiment. We have frequently used teleconferences to hear witnesses from as far away as New Zealand, but we have never before tried it with three different sites. We are delighted that modern technology, like the research many of you are involved in, is always making strides. We are delighted you were with us this morning and thank you for all your comments.
Mr. Prince: On one last note, I would be happy to be involved in any future evaluations once the law is passed. I would be pleased to see the bill passed into law and to work with you in the next year or two.
The Chairman: When the draft regulations come out, we will certainly be in touch with you.
Let me make some comments because some of our regular colleagues are not here.
We have heard in excess of 50 witnesses and have conducted 20-odd hours of hearings. I asked our researcher to keep track of how witnesses responded to the question that was described as the ``stark question'' of what they would do in the situation we find ourselves in, which is either amend the bill and thereby kill it or not amend the bill and proceed with observations and try to correct the faults when the regulations come before us or when we do the three- year review. The head count is essentially three to one — roughly 36 to 12 — in favour of proceeding with the bill. You ought to know that we did keep a headcount with respect to that question.
Four of our regular members are not here. I have heard from three of them.
Senator Fairbairn was hoping to be here today. She is flying in from a meeting in Lethbridge last night.
Senator Keon sent me a note saying that he has read the draft observations that have gone to all of you and is in favour of proceeding with the bill with those observations or observations as amended by the committee. He is not here today because he is the keynote speaker at a major medical conference in Vancouver.
Senator Cook and Senator Callbeck did not send me notes because I talked to them directly and separately. Senator Cook is in St. John's today with the Minister of Public Health, Carolyn Bennett. Senator Callbeck is in Charlottetown with another minister at a public event. They were both in favour of proceeding with the bill without amendment, and then adding the observations that I think were sent out to people and reflect the issues that all of us were concerned about.
I did canvass, by way of a memo to all members of the committee, whether anyone had amendments they wanted to introduce, not on the observations but on the bill itself. I did not receive indication that anyone wanted to make any amendments, although we all recognize that if we had our way, each and every one of us would have made some changes. However, we are back to the stark reality of the position that we are in.
With that by way of background, I would ask if committee members have any amendments. We do want to talk about the observations, but if no one wants to amend the bill, then I am prepared to entertain a motion to report the bill back to the Senate without amendment.
Senator LeBreton: I so move.
Senator Roche: I will speak to the motion.
Senator Roche: I will make a comment, but I intend the comment to be very brief.
I intend to support the bill going back unamended, but I would like to make a statement so that the committee understands my feelings and so that I am on the record with what I think about the bill.
I am greatly troubled by the bill, but I think I would be more troubled if the bill did not pass. For me, this personally has been the most difficult bill in my career in the Senate.
I feel that I want to give a spirited defence of the human embryo, which the bill describes as a human organism. I first of all wanted to put an amendment into the process that would ban embryonic research. If I could not get that, I would favour an amendment that would at least put a moratorium on embryonic stem cell research for three years until there is more evidence as to the efficacy of embryonic stem cell research being needed to complement adult stem cell research. I think more research is needed.
Coming to the point, I doubt whether amendments would pass the committee, but even if they did and if the amendments carried on the floor of the Senate, then the amendments to Bill C-6, going back to the House of Commons in the present political environment that we have to live with, would have the effect of killing the bill.
I hope we might take this sentence into the observations. It was the last sentence of Dr. Scorsone's testimony here last week. I want to read her words, because they made an imprint on me and my thinking and how I then reacted to the bill. Quoting Dr. Scorsone: ``I myself do not see any probability that better legislation would be forthcoming in the near term, or perhaps in the foreseeable future, if this bill were to be returned to the House now. If we choose not to take the incomplete but constructive steps realistically available to us, we choose to take responsibility for the consequences of not having taken them.''
I think that expresses the dilemma quite well. I commend those words to our chairman in perhaps making his own presentation of the report on the floor of the Senate.
It has been necessary to find common ground. I do not need to rehearse once more before the committee all the good things that are in the bill and the fact that our country, our society, desperately needs the regulatory aspects of fertility that will become law. In the effort to find common ground, I will join what I think is a consensus in the committee, or what I read is a consensus, that the bill go forward. I do hope that the observations we intend to attach to this bill will be taken very seriously by the relevant officials and the review committee on the bill across the board. I consider everything that is in the observations to be important.
I am confining my comment now to the section on embryo research because there is a community of concern in our country that is more than concerned. Some will be offended at our action because they will interpret it as being insufficiently attentive to the requirement to protect the embryo as an expression of human life. That is why I favour the application of clause 33 of the bill that would set up, as the observation makes the point, the advisory panel on embryonic research. It is not perfect, but the inclusion of that clause will go some distance to alleviating the concern of those who fear that this bill will open the door to genetic engineering with, perhaps, other negative consequences.
I do believe that the authors of the bill want the best thing for our Canadian people: to ban cloning and regulate the assisted fertility process. Our society, as a whole, I believe, will benefit from the fullness of the bill, but the caveat of embryonic research remains. Therefore, in weighing everything myself, I do think that it is better to proceed, but I would urge the committee to give its blessing to the clause on embryo research and, with respect to the setting up of an advisory panel, that the reports of the advisory panel on embryonic research be made public so that Canadians can be kept informed concerning research on embryos.
I have one or two minor word changes in this clause that we can come to later, Mr. Chairman.
I am ready to conclude my comments, but I hope the committee will interpret them as an expression of my good faith and the need to protect and advance the common good of the country.
The Chairman: Thank you for those comments, Senator Roche, because I know from personal conversations that this bill has been a struggle for you and other members of the committee. I appreciate it. I also appreciate the cooperation you have given me outside of this room in terms of trying to achieve some of your objectives.
Do other committee members wish to make a comment?
Senator Pépin: I regret that I was unable to participate in every committee meeting in that I was busy as Speaker pro tempore. However, this piece of legislation is very important. I was the coordinator of the first sperm bank in 1970, and for me, it is very emotional because I feel there is a part of history that has not been told. When that was started, it was an open window on the future because so many infertile couples were looking for a way to be able to give birth to children. At that time, there were only five doctors across the country. It was not making money, either. It was paid for by medicare, and the only person who was paid was the donor, and he had to answer a little list regarding where he was coming from. The register was not as complete as it should have been, but that was the opening. However, we felt we were giving happiness to those families.
It was very confidential. When we say confidential, at that time, in the 1970s, it was only the couple and the doctor who knew. Nobody else knew. At that time, it was always thought that the woman could not have children. People would say that she could not get pregnant, but most of the time the wife would find out that it was her husband who was infertile. She would say, ``How will I tell him?'' We would tell them to just leave the medical exam on the desk and he will find out. She could not tell him. It was a terrible situation.
After that, the couple would look for a solution. The doctor would tell them, ``It is only between you and your doctor. If you do not want to tell your family, brothers, sisters, that is your decision.'' That was the situation back then.
From 1970 on, we lobbied the government to establish a registry. I did not know anything about politics at the time, but I was coming with those doctors trying to find out how we could get a registry because there was a big preoccupation. Even if we knew the name and where the donor was coming from, maybe he could father more than one children.
When Dr. Leader testified last week, I spoke to him and mentioned one of the clinics, and he knows the owner. He said it is one of the best in this country. I mentioned sperm donors and criminalizing their activities, and he said that many clinics will have to close. He thought that was sad.
I think it is about time that we pass legislation like this. It has been 38 years in the waiting, and I think it will be wonderful. I want to be sure that three years from now we will reopen it and see how things are working. That is very important.
When you say that we will be studying the agency and how it will be proceeding with the rules and so forth, are we sure we will do it?
The Chairman: The bill contains an explicit provision that all regulations have to be tabled in draft form with both the House of Commons committee and our committee. To the extent that the government does not accept our recommendations, they have to give us a written reply as to why not.
The second issue is that with respect to the three-year review, we will simply insist in our quiet but reasonably forceful way that we are an integral part of the review process. This committee has done that in a variety of other areas.
Senator LeBreton: I have a few comments in regard to what Senator Pépin said. I mentioned at the beginning of the committee that I was in the Prime Minister's Office when we set up the Royal Commission on New Reproductive Technologies 15 years ago, and I remember how hard we worked to set up this body. Dr. Scorsone was one of the people. As a matter of fact, I went over to talk to her because we used to talk a great deal on the phone when we were setting this up. The reason people like Dr. Scorsone were on the commission as well as people like Dr. Patricia Baird was that we worked hard to have the commission reflect all aspects of society. In Dr. Scorsone's case, she had strong ties to the Roman Catholic Church. It was interesting to watch her work with the group. She was one, in particular. It was interesting to listen to her testimony and see, through this long path of 15 years, where the thought process has gone.
Personally speaking, I am very respectful of the views of my fellow committee members on the whole issue of embryonic stem cell research. I do not share those views. I feel that we have a system in this country where we can trust the scientists and, as a matter of fact, I would not mind some words to that effect in the observations. While I am mindful of the different points of view, personally speaking, I do not have a problem with the issue of embryonic stem cell research. Listening to some of the witnesses only underscored to me why it is important to have all aspects of stem cell research looked at — adult and embryonic.
Fifteen years from the setting up the royal commission and 10 years since it reported, this has been a long journey. I am really glad to see the end of it, at least until we do the three-year review.
Senator Cordy: I would like to thank Senator Roche for his comments because I know that he has struggled with this bill. I am also a practicing Catholic, so when the bill was introduced, I looked at it closely and weighed the pros and cons. Having listened to over 50 witnesses and read the testimony when I was not able to be here, I could not help but realize that your comments were that it would benefit society as a whole. Maybe parts of the bill trouble you if it is passed, but I am with you in that it would be even more troubling if it is not passed.
Currently there are no regulations in place. We heard previous witnesses talk about the problems people have who become pregnant with in vitro fertilization. However, no one has that knowledge. When this bill is passed, people will have more knowledge to be able to make better-informed decisions as to whether they actually want to use technology to become pregnant and to have children.
You have echoed comments that a large segment in our society is feeling. Many people are feeling as you are feeling. However, I believe this bill will make things better for more people.
The Chairman: Any other comments? If not, then we have a motion from Senator LeBreton, seconded by Senator Morin, that we pass the bill without amendment.
All in favour?
Hon. Senators: Agreed.
The Chairman: Carried.
Can we then turn to the observations section of the bill? I want to make a comment on the basis of a couple of the things that the witnesses said today.
What you have before you is a second or probably third draft of something that Sonya Norris, our researcher, the steering committee and I have worked on. Senator Roche suggested a couple of changes with which I have no problem. I will make a proposal — because the group edit process drives me crazy — namely, that we adopt a motion to accept the observations with amendments that individual members of the committee would like to give us and leave to Senator LeBreton and myself the authority to make those amendments because, having talked to people, they are not critical.
However, I would like your authority to add, on the basis of two or three other things that were said in our last panel, the need for at least 50 per cent to be women, the need for transparency, and the point that Senator Roche made about the need to be very clear that you cannot have people on the commercial side of this business on any of the committees. The phrase that Mr. Prince used was the governance side of this.
I could tell, as he was responding to Senator Roche and a few of the rest of you, that we were all in agreement, except for Senator Morin, who was troubled with the composition being 50 per cent women.
Senator Pépin: We are getting used to that.
Senator Morin: I ask for a vote on that matter.
The Chairman: I will abstain.
I would like to have a motion, because I know that our colleagues who are not here are happy with the observations. Subject to the amendments that a couple of you have given me and subject to Senator LeBreton and I adding a section on the discussion we had today, that is the approach I would suggest.
Senator Roche: First, when I spoke a moment ago and included in my comments the suggestion that the advisory panel on embryo research that we are recommending be attached to the agency under clause 33, I made the point that it is the reports of the advisory panel that should be made public in order to keep Canadians informed concerning the conduct of research in embryos and the advancement of the whole field. I did not hear any objection.
The Chairman: No, when I said transparency that is what I meant. That is part of the transparency. I would also like to include the quote that you used from Dr. Scorsone in the observations.
Senator Roche: Therefore, I am interpreting what you are saying now that you will include that in the observations.
The Chairman: Absolutely.
Senator Roche: The second point concerns the regulations. I raised this before when the minister was here and I am not perfectly clear in my own mind about the legal timelines for regulations.
I raised the question with representatives of the department that if regulations as such could not be presented to us prior to third reading of the bill could we have some draft or something so I could get some indication of their thinking. The record would show a general answer that they would try to make something available. Have you received anything?
Second, do you expect to receive anything from the department that will give us some inkling into what the regulations will be, and third, if not, why not?
The Chairman: No, we have received nothing. I will get a definitive answer for next Monday on whether we are likely to get anything. My guess is that I do not expect anything. Frankly, I think that very little resources have been devoted at this point to drafting the regulations. My sense, from all of the conversations I have had with bureaucrats inside the department, is that the whole emphasis has been on the bill and on a number of other health care issues not related to this and on which a limited number of policy people have been working. I do not realistically expect to get anything.
Nevertheless, I propose, with your approval, and I assume it will be part of our motion on the observations, that we formally send the observations not only to the minister but also to the assistant deputy minister for policy. Included would be a gently worded observation or note that one of the things we will be checking when the regulations come before us is the extent to which they take into account our observations. The department should reflect on that and the relative ease or considerable difficulty that it might cause as we deal with the regulations.
Frankly, I think we have given them a whole pile of things that we are concerned about that can be dealt with in the appropriate regulations. If they are not dealt with that way, we are entitled to know why.
Senator Roche: When our committee reports the bill back to the Senate, as I expect we will do, the observations will be attached to the report, correct?
The Chairman: Right.
Senator Roche: Are they conjoined at the hip? Are they part of our report?
The Chairman: Yes.
Senator Roche: They are not some little throw-away thing.
The Chairman: No. As you know, I specialize in not understanding Senate procedure, so that if I break a rule I can say that I did so inadvertently.
However, a report goes back to the Senate reporting the bill unamended with observations. The document that actually goes to the Senate has a covering page and the observations. The report of the committee that goes to our colleagues is both of those. As members of this committee speak at third reading stage, I would assume that they would strongly address the issues raised in the observations.
My reason for wanting to send the report to officials in the department — I will send it to the minister pro forma — is that the drafting of the regulations will be done in the bowels of the system. We are entitled to have our observations taken seriously. They could be dealt with in regulations and we are entitled to know why. I will make that very clear.
Senator Morin: Following your remarks, I plan to summarize the main parts of the observations in my speech at third reading. I will refer to and summarize them.
Senator LeBreton: There was one other piece of legislation where we had extensive observations that became more known. I cannot think of the bill. We returned it without amendment but with observations. To deal with Senator Roche's question, the observations became more of the story.
The Chairman: The observations became part of the policy.
Senator Roche: That was the bill dealing with veterans' pensions, I believe.
Senator Pearson: My comment is that not having been a regularly attendee of the committee, I found the observations extremely helpful because they summarized where the regulations were. On the whole, as a temporary member, I would thoroughly approve of them, except that in the section under ``surrogacy'' there is a badly written statement.
The Chairman: You are right. There were a couple of others, but I missed that one. Thank you.
I would ask for a motion to, first, approve the observations but delegate to Senator LeBreton and I the right to make other changes either that committee members mentioned or about the points that we are concerned about today; and, second, to authorize me to send those observations to both the minister and the deputy minister with the clear understanding that they better take the observations seriously when they are drafting the regulations.
Senator Pépin: I so move.
The Chairman: Honourable senators, is it agreed?
Hon. Senators: Agreed.
The Chairman: Carried.
Senator Morin: When will the report be presented?
The Chairman: The report of the committee will be presented when the Senate meets next Tuesday.
The committee adjourned.