HEAL Committee Meeting

STANDING COMMITTEE ON HEALTH

COMITÉ PERMANENT DE LA SANTÉ

EVIDENCE

[Recorded by Electronic Apparatus]

Thursday, November 29, 2001

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[English]

The Vice-Chair (Rob Merrifield (Yellowhead, Canadian Alliance)): We'll call the meeting to order. We're a little bit shy on members, but I think they'll be coming in as we proceed.

We have a fairly heavy line of witnesses this morning, so let's get right to it. We have the Canadian Environmental Law Association, Paul Muldoon; Pembina Institute, Mr. Mark Winfield; the Council of Canadians with Disabilities, Kathy Marshall; and the Canadian Association for Community Living, Audrey Cole.

We want to thank you for coming, and we're looking forward to your presentations.

We'll start with Mr. Muldoon.

Mr. Paul Muldoon (Executive Director, Canadian Environmental Law Association): Thank you very much.

My name is Paul Muldoon. I'm executive director of the Canadian Environmental Law Association. With me is Dr. Mark Winfield of the Pembina Institute. We're providing a joint submission today, and the focus of our submission deals with administrative delegation, administrative agreements, and equivalency agreements.

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One may ask what is the relevance of all this to the proposed legislation in front of you, but it's quite clear that the legislation in front of you does include important provisions dealing with administrative delegation and various types of agreements.

Administrative delegation, simply put, is where the federal government hands over, or delegates, certain federal functions to another level of government, an agency, or a non-government group. Administrative agreement is where the federal government comes to an agreement with the province on how to administer, or how the province can administer, certain parts of the statute. An equivalency agreement is an agreement where an order is made by the federal government declaring that the laws or regulations of a province are equivalent to the federal law or regulation, and as such that portion of the federal law or regulations would not apply to the province. In effect, it's an opting-out process.

All three of these mechanisms are in the proposed Assisted Human Reproduction Act. It's our view that it's useful to contemplate these mechanisms.

For Dr. Winfield and me, these are not new mechanisms. Our experience is derived from our history with the revision and revamping of the Canadian Environmental Protection Act. These kinds of mechanisms were debated at length and reviewed at length. Since they have been in place for a number of years, there has been some long and vocal commentary on how they ought to work, how they have worked in practice, and how to ensure that they should work in terms of what kind of precautions should be advised with respect to them.

Drawn from experience in the environmental field, this presentation highlights a number of concerns and caveats with respect to those mechanisms. Essentially, the theme is that these are important mechanisms for the effective and efficient operation and implementation of statutes. It really does help to facilitate cooperative federalism, but there are also downsides. Where they could enhance the implementation of statutes, they also can have some serious repercussions, especially with respect to the federal role.

Those are the issues we would like to bring out in regard to two clauses here. The first, clause 23, deals with the delegation of inspections to “any person”, and clause 33 deal with enforcement and non-governmental agencies. Dr. Winfield will address this, and I will then come back and talk about the delegation of enforcement and the equivalency agreements found in other parts of the bill.

In terms of the delegation of inspections and enforcement, then, I'll give it to Dr. Winfield.

Dr. Mark Winfield (Special Adviser, Organizational Services, Pembina Institute for Appropriate Development): Thanks, Paul.

My name is Mark Winfield, and I'm director of the environmental governance program with the Pembina Institute for Appropriate Development. The institute is an independent and not-for-profit environmental policy and research organization. Its head office is in Drayton Valley, Alberta, and we have satellite offices both here in Ottawa and Calgary.

I'm going to focus my remarks this morning on aspects of the bill that deal with the delegation of inspection and enforcement functions to non-governmental entities. These provisions appear in clause 23, which permits the delegation of inspection responsibilities to “any person”, and clause 33, which permits the delegation of enforcement responsibilities to “non-governmental organizations” in addition to a number of other entities.

Essentially, I'm going to focus on the issue of the delegation of inspection and enforcement functions to entities that are outside of government, federal or provincial. My comments here will build, as Paul said, on our work on the review of the Canadian Environmental Protection Act, and more recently my own work on the delegation of regulatory responsibilities to non-governmental entities. I am the author of a fairly major report on this type of delegation in Ontario, where the public safety regulation functions of the Ministry of Consumer and Commercial Relations were delegated to a non-governmental entity, the Technical Standards and Safety Authority.

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I was also the author, for the purposes of the Walkerton inquiry, of a study on the use of alternative service delivery mechanisms, including delegation to non-governmental entities, for the purposes of drinking water protection. I'll file copies of both of those reports with the clerk for the reference of the members and the researchers.

The delegation of inspection and enforcement powers to non-governmental actors is becoming an increasingly common practice in Canada at both the federal and provincial levels. In our view, this is a highly problematic practice.

In effect, these clauses of the bill permit the delegation of these functions to non-governmental actors. Our concern is that these non-governmental actors are not subject to the accountability and oversight mechanisms in place when public servants and law enforcement agencies exercise these kinds of powers.

We need to understand that these clauses of the bill provide for the delegation of all kinds of coercive powers of the state—for instance, the right of entry, the right to examine and seize documents and materials, the right to require those subject to inspection to provide assistance to the inspectors, and the power to enter dwellings subject to search warrants—to non-governmental actors.

As non-governmental entities, these types of organizations and individuals are not subject to supervision by the Minister of Health and are not subject to the supervision by the Solicitor General, either federally or provincially in the case of a delegation of a provincial government. The minister is not in a position to answer to Parliament for their actions, and indeed, under the provisions of the bill as drafted, may not have any means of knowing what those actions are, since the bill as presented provides for no reporting mechanism from either the delegated entities to the minister or the minister to Parliament about what activities these non-governmental actors might undertake.

The applicability of the Canadian Charter of Rights and Freedoms to the activities of non-governmental entities undertaking these kinds of inspection and enforcement functions is unclear. This is especially important in terms of the charter's protections around unreasonable search and seizure.

The applicability of the normal administrative law protections regarding natural justice and fairness in the exercise of statutory powers again is unclear when applied to non-governmental entities as opposed to governmental actors.

The applicability of access to information legislation and protection of privacy legislation with respect to the reports or information gathered by non-governmental entities is again unclear. This is an especially important consideration given the subject matter of the bill and the nature of the personal information that inevitably will be involved in inspections carried out under this legislation.

In Ontario, where similar delegations of regulatory and inspection responsibilities to non-governmental entities have occurred, the province's freedom of information and protection of privacy legislation has indeed ceased to apply to that information.

The Auditor General would have no jurisdiction to oversee and review the activities of these non-governmental actors. The bill as drafted provides for no rules or guidance as to which persons or organizations to whom these enormous powers of the state might be delegated might be. One has to assume that in the drafting of the bill the department has somebody in mind. I would suggest to the committee that you may want to ask the department who that is.

There is the potential for conflict of interest when these responsibilities are delegated to non-governmental actors. It is possible to envision, for example, inspection and enforcement responsibilities being delegated to an organization that perhaps represents the interests of operators of the clinics offering the kinds of services to be regulated through the bill. Again, there are no restrictions or requirements in the legislation around these kinds of situations.

The legislation makes no provisions regarding the assessment of the capacity or qualifications of non-governmental organizations to whom these inspections might be delegated. Indeed, the bill itself contains no definition of a non-governmental organization to which it purports to provide the authority to delegate these functions.

In our view, the coercive and law enforcement powers of the state should not be delegated to non-governmental actors. The delegation of these kinds of powers should be limited to public servants, be they federal or provincial, or law enforcement agencies.

Mr. Paul Muldoon: Thus far, what has been addressed is those instances where parts of the bill are delegated to non-governmental agencies, new agencies at times, presumably, or existing agencies that are apart from government.

What I'd like to speak to is a mechanism in the bill called “equivalency agreements”, as found in clause 41.

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Clause 41 is not a long clause but it's an interesting one, and one that's very unassuming. It contains a mechanism whereby an order of the federal government be made declaring provincial law or provincial regulation to be equivalent to what's in the bill, and, if so equivalent, then the federal law or regulation would not be applicable.

These are interesting mechanisms to facilitate implementation of statutes, and in this instance, of course, they can achieve that purpose. On the other hand, there are some significant downsides that can occur and that have occurred in the environmental field. Our objective here is to highlight the issues and concerns raised in the environmental field and for you to consider whether or not it's possible or appropriate to add precautions in other provisions to address those concerns drawn from other experiences using these kinds of mechanisms.

That said, I want to start off with some of our specific concerns, but I do want to highlight one thing—that is, in our submission, we highlight a whole number of concerns. I'll walk you through them very quickly. It's not just groups like ours, research and non-governmental groups, that have been advocating this nature of concern. In 1999 the Commissioner on the Environment and Sustainable Development did, if you will, an audit of it.

For your review, I've submitted copies to the clerk of the report entitled “Report of the Commissioner of the Environment and Sustainable Development to the House of Commons”. Chapter 5 of the 1999 report, Working Together, really does summarize the essence of what I have to say. It's called “Streamlining Environmental Protection Through Federal-Provincial Agreements: Are They Working?” I'd like to highlight that chapter.

I won't take you through the detailed analysis of the environmental commissioner at this time except to highlight the two main points in two conclusions. Because it does summarize so well our concerns, I'll just read paragraph 5.1. It does in fact provide the essence of our submission:

Federal-provincial environmental agreements offer potential for increased protection of the environment and the streamlining administration and regulatory activities between the two levels of government. The agreements that we audited are not always working as intended. We found that many activities that are essential to implementing these agreements are not working as well as they could.

The next paragraph goes on to state:

Environment Canada was unable to provide us with documents to indicate that before entering into these agreements the federal government had formally analyzed the associated risk to determine, for example, whether both parties could do what they were agreeing to do.

That's the main point, but I'll cite just two short conclusions. This is 5.96:

Although the agreements have built in some accountability mechanisms, other important ones are absent, such as provisions for audit, accounting for federal funds transferred, and specific requirements for reporting.

Parliament is receiving incomplete and outdated information on the results of the CEPA agreements and no information on the results of the Fisheries Act agreements.

Prior to entering into an agreement, the federal government did not conduct a formal analysis to evaluate whether both parties to the agreement were able to properly carry out their assigned responsibilities.

And the critique goes on.

What this suggests, and what the environmental commissioner suggests, is that there were two types of problems. One type was the design of the agreements and the implementation of the agreements, and that really speaks to the lack of legislative direction given to the negotiators of the agreement.

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Second, it speaks to the lack of accountability mechanisms found in the agreement that once the equivalency agreements were found to be equivalent, in effect, the federal government was handing over an area but not having any reciprocal reporting function as to whether or not that area handed over was being undertaken in a way that was appropriate or complete. That's what's raised concern.

I'll just spend a few more minutes highlighting some of these. Referring to clause 41, again, in our view the provisions in that clause are virtually identical to, or even less specific than, those provisions that the environmental commissioner reviewed. So we are comparing apples with apples, in my view.

In the current clause 41, there are no reporting or accountability requirements. They do not address the concerns raised by the commissioner. In fact, there's no requirement to assess the capacity of the entity to which the enforcement or the other administrative parts of the agreement are to be delegated. There are no requirements for contingency plans in the event the delegated entity fails to carry out its functions. There is a six-month termination notice, but what happens between the notice that they're going to terminate the agreement and the reinstatement of federal requirements is unclear.

There are no provisions for a sunset or renewal of the administrative or equivalency agreements.

There are no requirements for reporting of activities under the administrative or equivalency agreements, which means, indeed, there are no requirements to even report to Parliament and highlight to the public that these requirements or these agreements exist. There is no provision for public notice or comment on proposed agreements.

There's also no “savings” clause, as we call it, something to the effect that, say, no agreement shall prevent the federal government or minister from taking any action he or she deems necessary for the proper administration and enforcement of the act.

The result is that, in our view, when you hand over, through these agreements, the responsibility to administer parts of the agreement, there must be some reciprocality involved such that the entity that's receiving the responsibility reports back on progress, reports back on performance, and reports back on how it's actually working so that Parliament can provide some comment or at least have some information as to whether or not the equivalency agreement is working. That's absent now.

Secondly and finally, the equivalency agreements under clause 41 would be negotiated without the benefit of public comment, without even the benefit of groups that are interested in this issue commenting on it and then being able to understand when it was negotiated, what are the terms, and how they participate in the evaluation of that agreement. It is, in effect, purely a bilateral relationship between the federal government and the entity that's receiving the responsibility, usually the province, without the affected communities having any role. I think that does not work toward making more intense and enhanced accountability regimes.

Mark.

Dr. Mark Winfield: In summary, we see there being two issues here. One is the question of delegation of inspection and enforcement responsibilities to non-governmental entities. The other is the delegation of these responsibilities to other levels of government, particularly the provinces, through administrative and equivalency agreements.

With respect to the delegation of inspection and enforcement powers to non-governmental entities, it is our view that these powers should not be delegated to non-governmental actors but instead reserved to public servants and law-enforcement agencies.

It is our view that the public expects such powers to be reserved for governments, and governments alone. Indeed, the accountability framework we have developed around the exercise of these kinds of powers assumes that they will be exercised by governmental actors. We've not really created accountability structures for their exercise by non-governmental actors. Indeed, this bill makes no provisions for such a framework at all.

With respect to the delegation of these powers to other levels of government, in principle these provisions in administrative equivalency agreements can be useful means of implementing the legislation, but they do have to be drafted very carefully by Parliament. In particular, they need to detail precise requirements and duties of the respective orders of government and include a clear reservation that the federal government retains the ultimate authority to act, to take whatever measures it deems necessary to administer and enforce the legislation.

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In addition, these types of agreements, and the statutory provisions providing for them, need to provide for proper reporting, an accountability framework, transparency, public participation and involvement in their development, sunset and review processes, and, as I say, provisions to reserve the federal government's authority to act, as necessary, to administer the legislation.

In the absence of these provisions, the committee runs the risk of reproducing the problems documented by the Commissioner of the Environment and Sustainable Development under the administrative and equivalency agreements under CEPA, where in effect the government essentially blindly delegated its powers to other levels of government, with no assessment of whether or not they had the capacity to carry out those responsibilities, indeed placing itself in the situation where it had no way of being able to find out if those responsibilities were being carried out or not.

We'll conclude there and thank you for your attention.

The Vice-Chair (Mr. Rob Merrifield): Thank you for your thorough presentation. It sounds as though we have a little work in that area. It's certainly enlightening.

I'd like to ask now if Ms. Marshall would present her submission with regard to the disability provisions.

Ms. Kathy Marshall (Secretary, National Coordinator and Projects Supervisor, Disabled Women's Network; Executive Member, Council of Canadians with Disabilities): Good morning. My name is Kathy Marshall. I'm national coordinator for Disabled Women's Network Canada and on the executive for the Council of Canadians with Disabilities.

I need to apologize upfront for not having a prepared statement, but we were called at literally the eleventh hour, late yesterday afternoon. I do have a copy of my presentation in English, and I understand it needs to be translated before it's distributed.

The Council of Canadians with Disabilities has been promoting the disability rights perspective on assisted human reproduction since the early 1990s, because NRTs raise many human rights issues for persons with disabilities. For example, on the one hand, it's crucial that people with disabilities have equitable access to the new reproductive technologies available to other Canadians to assist individuals to overcome fertility problems. On the other hand, the application of NRTs for the purpose of the elimination of disability pose many threats to equality rights of persons with disabilities. Depending on how they're used, NRTs could further stigmatize people with disabilities.

When considering changes to legislation governing assisted human reproduction, it is paramount that: the protection of the diversity of Canadians is ensured and the diverse lives of Canadians with disabilities is not devalued; it's recognized that science and research on assisted human reproduction and new reproductive technology is advancing at a much faster pace than the ethical discussions that are happening around this issue, and Canadians must have the opportunity to participate in that ethical debate; counteraction to the eugenics bias in the application of NRTs is crucial; and the fundamental rights of Canadians with disabilities become more integrally involved with the values development related to new reproductive technologies.

The Council of Canadians with Disabilities is firmly committed to the achievement of equality and justice for people with disabilities, non-discrimination, self-determination, and consumer control. People with disabilities must have access to and the right to refuse reproductive and genetic technologies. They must have access to reproductive counselling that does not carry an “enablistic” bias. The principle of non-discrimination dictates that where there are positive benefits to be gained from new reproductive technologies, people with disabilities must have access to these benefits.

Canadians with disabilities must not be adversely impacted by these technologies. The principle of non-discrimination supports diversity within the population. It views disability as another human characteristic, the same as race and gender. The principle of self-determination and consumer control demands that individuals be empowered by being given all necessary information, free from enablistic bias, to make uncoerced, informed decisions about reproduction benefits. Risks of treatments must be presented without enablistic biases.

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The Disabled Women's Network of Canada has provided the disability rights movement with the feminist ethical criteria for evaluating new reproductive and genetic technologies. These criteria include: the health and well-being of women and their children, including future generations, must be evaluated; respect for the dignity, equity, and human rights of all women, especially women who have historically experienced disadvantage and discrimination because of their race, class, ethnicity, ability, and sexual orientation; and commodification and commercialization of the human reproductive process must not take place.

Informed choice, as opposed to informed consent, includes an understanding of the social construction of choice, such as control over the decision-making. Female bodies must not be appropriated for experimental purposes. New reproductive and genetic technology should be recognized as experimental rather than treatment when providing information on the status of new reproductive and genetic technologies. In the context of NRTs, the language of choice and of rights becomes the language of deception. It hides the power relationships in the world and masks the factors that influence and define the parameters of women's choices. Individual choice-making must be balanced with the collective interests of society.

The issue of male factor infertility must be fully acknowledged and responsibly addressed without exploiting women's bodies. Addressing the causes of infertility should be the funding priority over the development of the technology. This requires adequate funding for health promotion, research, and clinical programs as well as community-based educational strategies focusing on the prevention of infertility. And equitable access, assuming the above criteria, must be fulfilled.

Thank you.

The Vice-Chair (Mr. Rob Merrifield): Thank you very much. We certainly appreciate that.

From the Canadian Association for Community Living, Audrey Cole.

Ms. Audrey Cole (Former Board Member, Canadian Association for Community Living): Thank you for this opportunity. I'm sorry I was late, but it was a hard drive in.

First of all, I should say who we are, although many of you, I'm sure, will already know. The Canadian Association for Community Living is Canada's national organization dedicated solely to the participation of people with intellectual disabilities into all aspects of community life. It grew out of a movement back in the late forties of parents who were fighting for the right of their children to have educational opportunities in the community rather than being separated from the family and shipped off to what was, in Ontario at the time, the only institution, far from the family and with a way of life that was totally unnatural and totally unfamily-like.

CACL itself was founded in 1958 and has worked consistently with and on behalf of people with intellectual disabilities, many of whom do not have voices that are readily listened to by the population at large.

I appreciate the opportunity today. This is last-minute, as we were only informed, apparently, late yesterday afternoon. I was under the impression that I was joining someone here from CACL, but I now understand that I'm on my own. I can say that there is a very quickly pulled-together document, which I understand you have, but my role is to bring a more personal point of view to the issues.

I'm a member of CACL and a former member of the board of directors at CACL. I'd like to begin my personal comments by referring to a statement in the last paragraph in the introduction of the May 2001 Health Canada document entitled Proposals for Legislation, Governing Assisted Human Reproduction: An Overview. There were a few sentences that struck me:

The review and discussions are needed because the draft legislation raises ethical, social and legal issues that leave no one indifferent. They deserve as broad a societal dialogue as possible.

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So I make the presumption that all citizens of Canada, irrespective of their genetic or otherwise origins of disability, are entitled to have their interests respected in that dialogue. As a parent of a citizen who has Down's syndrome and who does not speak, I find myself questioning whether the societal dialogue and the review by the committee is of sufficient breadth and depth to ensure that my son, my son's rights, and the rights of people who face the same attitudes in society will be protected. His status and well-being, like those of all Canadians with disabilities, is affected significantly by how society views genetic conditions such as Down's syndrome, which tend to be seen to need to be avoided in the process we're talking about in this legislation.

My question, as a family member, is what values are going to guide this dialogue? Together with other members of CACL, I wholeheartedly support many of the amendments proposed in the draft legislation. However, at CACL we feel very strongly that at least two additional statements should be included in the preamble to the whole exercise and indeed any legislation that affects people with disabilities, particularly people with disabilities of genetic origin.

To that effect, CACL would humbly propose that the following additions be placed in the preamble. I'll explain in a minute why these are so important. We humbly suggest that you adopt this:

Whereas the Parliament of Canada recognizes that the potential of using these technologies to control this path of human evolution by defining what is acceptable to the human condition would be a misuse of the legislation, and recognizes that the existence of disability relates more to social constructs than it does to the physical or intellectual characteristics of individuals;

Those amendments are critical to us if we're to ensure that those social, ethical, and legal issues raised by the legislation will not be allowed to have adverse effect on people with disabilities, in particular people with disabilities of genetic origin, for the very reasons Kathy has mentioned.

We believe society has a fundamental obligation to ensure that the principles of justice, non-discrimination, respect for diversity and autonomy, and informed decision-making are protected for all citizens, irrespective of their personal characteristics. We firmly believe human beings are not simply bunches of genes wrapped up in envelopes of variously coloured skin. As human beings, our growth and development is a result of our relationships with each other, our concern for each other, and our innate capacity to respect and to share the human experience as a society.

The most valuable attribute we have as a society is our diversity and our capacity to adapt to and understand and welcome natural differences. The concerns expressed by members of CACL are not the unfounded fears of an uninformed public. They are real and they reflect our experience of life and the experience of our sons and daughters, relatives, and friends who live with disability. A society without difference would be a cold, sterile environment in which to pass our allotted lifespan.

The notion that our genes even could be owned by profit-seeking corporations seems to so many of us to be an unwarranted and totally unacceptable notion, one that we don't want to live to see in our society. Surely as a society we are bigger than our scientific and technological expertise. Just because we discover the how, it must never be presumed to mean that we should.

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The effect of genetic technology and its implications for the future of people with disabilities are cause for great concern by people with disabilities and their families. Today's statistics are quite frightening, and the rate at which science and technology tends to be guiding us to an assumption that we can eliminate certain types of disability—and not only that we can, but should. Yet those people who live with those disabilities have not been involved, or been asked to be involved, in the discussion that leads to those assumptions.

In Canada we talk constantly about the importance of families, about the stabilizing role that family life has in society at large. This legislation alone testifies to the importance of having a family, and being able to have a family, to our societal well-being. But families come in all shapes and sizes.

Personally speaking, our family unit is a mom and a dad and a son who happens to have a very significant disability. My husband and I feel very privileged to have become parents before it became a social crime to have a child with Down's syndrome, before genetic genocide became a socially acceptable objective and actually funded by our national health services.

We welcome the proposed prohibition on human cloning, sex selection, and those related issues, but we are saddened that as yet we sense no guarantee in Canadian society today that the same attention and the same consideration will be paid to matters prohibiting the systemic destruction, for example, of potential human beings with Down's syndrome. There are other conditions that most of us who don't have a disability perceive to be a problem and therefore of no value to society.

We're saddened that we're ready as a society to put more money and effort into the technological search for the perfect genetic perfection than into supporting citizens with disabilities to live the life that they were given and that they themselves value extremely highly, just as highly as those of us who don't have disabilities values our lives.

It's for these reasons that we feel it is essential that this or any legislation relating to the human condition must include principles and prohibitions that will ensure the equal right of people with disabilities to enjoy life, equal justice, freedom from discrimination, and acceptance as contributors to our diverse society.

Those are the concerns placed here, in rather a personal way, by a family member who feels, like many individuals and family members with similar conditions, extremely threatened by the work that's going on and to which such attention is being paid in the absence of consideration for their well-being.

Thank you.

The Vice-Chair (Mr. Rob Merrifield): Thank you very much. It's very enlightening and gives us another perspective on the matter at hand.

I think we have a little more time. We actually have until noon, so I think we can go for a round of questioning.

Mr. Manning.

Mr. Preston Manning (Calgary Southwest, Canadian Alliance): Will we have time for two rounds?

The Vice-Chair (Mr. Rob Merrifield): Possibly, or whatever we can squeeze in.

Mr. Preston Manning: Yes, because I have questions for all our guests.

I want to thank you all. You've raised a number of things we haven't really dealt with.

Maybe I can start with Kathy and Audrey.

First of all, I can say that from a personal standpoint I identify a little bit with persons with disabilities, including mental disabilities, because I had a brother who suffered intellectual disabilities his entire life as a result of cerebral palsy. So I identify with what you're saying, and the fear that such persons will not be regarded in the overall scheme of things, including this bill, with the dignity they deserve.

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My first question is, it's possible to put something in the preamble of this bill that affirms the dignity of disabled persons, but is what you're asking for something stronger? It is possible also in this bill to prohibit, by statute, a eugenics bias in the reproductive policies of the government. I'm just wondering if, in order to give effect to what you're saying, that would be your preference. I don't expect you to answer this fully today, perhaps, but I wonder whether your association could provide suggested wording for a prohibition against a eugenics bias in the reproductive policies of either the government or the regulatory body that's created.

Would you like to comment on that?

Ms. Audrey Cole: I feel a little difficulty in that I know I'm here to speak for CACL, but I'm not a current member of the board and I'm not in recent and current discussions. I'm not part of those at the moment. But certainly that's a notion that would be welcomed by many people who feel this kind of threat.

It's the kind of thing that's been said to me on many occasions by people with disabilities, that unless we have that kind of prohibition, their lives will never be safe, because it's not simply a question of preventing new births; it's what we do to the people who are already here. If we successfully, as we are doing, eliminate Down's syndrome, I can't imagine why. I can't imagine, personally, what my life or what my family's life would have been like had our only child not had Down's syndrome. I think we would have been very different persons, certainly not the kind of people we are. As a family, it's been most frustrating, but the frustration is not anything to do with Down's syndrome; it has to do with the environment and the lack of consideration.

Mr. Preston Manning: I'll perhaps leave that with you. If your associations want to suggest something, not just in addition to the preamble but also a prohibition against a eugenics bias in public policy or the policies of a regulator, I think we'd be interested in looking at that.

My second question has to do with how you create standing for people with disabilities before the regulatory tribunal that's envisioned by this statute and whether you have any ideas as to what kind of standing for disabled people would be most effective.

There are several options. One would be to ensure that there is some representative of disabled persons on the regulatory authority. The other approach is to pick regulators who are really there not to represent; they're there for their judgment. But you give representation to, in this case, disabled persons on an advisory board to the regulatory authority. The third option is if you create a more neutral regulatory body to give standing to particular groups to appear before that body, more or less as you appear before us, assuming we were the regulatory body and you came as witnesses to be cross-examined and to make your point.

Do you have any preference as to what would be the most effective way to provide representation of disabled persons before such a regulatory scheme?

Ms. Audrey Cole: I think Kathy might have something to say about that, but just off the cuff, I think you have to be very careful about making an assumption that you can have one voice for people with disabilities. The life experience of people with disabilities varies from one end of the spectrum to the other. It's almost impossible to have one voice. And one of the problems with voices is that it isn't necessarily the most articulate people who can best express the effect of things on people with more profound disabilities.

So as to quick solutions, we haven't got one, but the invitation to work on it is certainly welcome.

I don't know whether Kathy wants to add to that.

Ms. Kathy Marshall: I would agree with Audrey. I think it's very important that representation be at all levels in terms of a regulatory system. I would be happy to provide information to the committee at a later date in terms of a detailed plan on that.

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Mr. Preston Manning: You might think that where there is no single voice that can represent an interest, it's actually to your advantage to be represented this way, where anyone with that—in this case—disability has standing before the tribunal and can come and be a witness.

I'll try to catch the environment people in the next round, because I'm also very interested in what our other two guests think.

The Vice-Chair (Mr. Rob Merrifield): Ms. Sgro.

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

This committee continues to amaze me, how we continue on the same question path all the time.

Mr. Muldoon, in terms of the draft legislation before us—and I thank you very much—one of the issues we've been trying to deal with is this issue of the regulatory body—how everything should be arm's length from the government; how much involvement the government itself should have; and how close the minister and we as Parliament should be involved in this whole process.

As people were talking about these regulatory bodies, they seemed to have a much higher confidence level in the regulatory body than some of us do. Some of these recommendations in this report will be helpful, I think, when we're looking at where we're going with this legislation, trying to ensure that the protection we want to see in here is in here. I think clause 41 was a good example in terms of the equivalency.

Have you had a chance to review all of the draft legislation before us or just certain clauses?

Mr. Paul Muldoon: I've read through it but I'm not intimately familiar with it.

Ms. Judy Sgro: We want to make sure that this whole issue has teeth and the ability to ensure that what we want as a government and as a committee is in there. Do you have any other suggestions as to ways in which we can tighten this up?

Mr. Paul Muldoon: I won't speak specifically to the legislation except perhaps generally on the architecture of legislation. What other pieces of legislation will do to clarify Parliament's intent is have things like declarations at the start. A preamble is good, because a preamble gives the context, but a number of statutes will say “It is hereby declared the policy of the federal government is a, b, and c.” So if there's any confusion, one can use the preamble as an aide for interpretation of the statute, but use also, and perhaps legally more importantly, the declaration. The declaration is the clear and unequivocal statement of federal policy dealing with these issues.

That type of guidance is kind of obvious by its absence, because there are so many important issues in this proposed legislation but they're not laid out very clearly. Certainly I could refer you to some other legislation that has a very clear statement of policy.

I guess a good example would be the Canadian Environmental Protection Act, where they actually outline what they call “administrative duties” and clarify the role of respective governments, in this case the role of the federal government. So you have a declaratory statement or statements dealing with what the policy is, but then, more specifically, what the role of the federal government is in implementing that policy.

Those are the two clear examples, I think. I'm not trying to say it's easy; I'm just trying to say that would be the clearest thing to do.

Ms. Judy Sgro: How soon would you be able to get us those examples that you were referring to?

Mr. Paul Muldoon: We can get them to you very quickly.

Dr. Mark Winfield: The other question that I think is underlying the discussion is the possibility of the use of some sort of regulatory commission as opposed to the minister as the key decision-making body.

Even in that context, Paul's comments do apply, that even if Parliament goes down that road, it's still incumbent upon Parliament to provide clear policy direction to the commission through the preamble and through the legislation, which reflects the values of Canadians as you've heard here. Otherwise, you simply hand the decision-making responsibility off into something of a vacuum, and it becomes a function of who's on the commission. I think it's much better that Parliament provide some sort of direction through these kinds of provisions that Mr. Muldoon has discussed.

• 1155

Ms. Judy Sgro: One further question. You make reference in your report to “non-governmental actors”. I thought that was an interesting comment. Could you give me an indication of who you consider to be non-governmental actors?

Dr. Mark Winfield: I would say that all of the organizations represented by the witnesses before you today are non-governmental organizations or actors. This is precisely one of the concerns we have in the draft bill, that it makes reference to the delegation of inspection and enforcement powers to non-governmental organizations but then never defines them. At a minimum there would need to be a definition, because, as I think we've indicated, we also have great concern in principle with the delegation of these kinds of coercive powers of the state to non-governmental entities. They're certainly not powers that we exercise under any normal framework.

Indeed, the framework we have developed to ensure that those powers are not abused very much assumes that they will be exercised by governmental entities and not private entities.

Mr. Paul Muldoon: Perhaps I can add that we're non-governmental organizations, and we believe intimately and profoundly in the role of non-governmental organizations and their place in society, which is to highlight the diversity of views in society, to advocate for positions and policies that reflect the values of society, to do research, and to do all those wonderful things non-governmental groups do. The discussion before you is slightly different. It's not whether or not non-governmental groups have a profound value in society. It's that when you have a piece of legislation that really goes to the core of so many values, do you hand over the enforcement of that to an agency you may have very little control over?

In our view, enforcement power is a key and profound role of government, because, as we suggested, it has that power. It implements legislation. It is what the public expects the government to do.

Now, we can have a very vigorous debate on what should be in the policy, but certainly once there's agreement on what the policy in law is, I think all the polls that I know of suggest that people want that enforced, and enforced by an entity that's accountable to the electorate. And the only entity that's accountable directly to the electorate is Parliament, and agencies of Parliament.

So that's literally what's at play in terms of the implications of the legislation if it were to be implemented. Literally, you could have the enforcement handed off to an agency, created with virtually no strings attached. That's what we're concerned about.

Ms. Judy Sgro: Just to clarify that, you're saying that the enforcement power should stay in the hands of—quote—the “Government of Canada”, and then we will still have this commission that's going to deal with these issues, and they're overseeing each other. And now you've...? I'm not sure.

Dr. Mark Winfield: I would see those as being distinct questions. If there is a regulatory commission, it would be understood, the way these things normally are constructed—for instance, the National Energy Board or the CRTC—that they are considered part of the structure of the state. They are governmental agencies. Therefore, their inspectors or enforcement staff would be subject to the oversight and accountability structures that normally apply to government.

Our concern is around the notion of delegating the inspection and enforcement powers to a non-governmental entity, a private corporation, such as an association of clinics that provide these services. We would object very strongly to the delegation of these kinds of powers of the state to those kinds of entities. Our big concern is the failure of the legislation to even define what this category of entities might be.

Ms. Judy Sgro: Thank you.

The Vice-Chair (Mr. Rob Merrifield): Thank you.

Just to clarify, we were scheduled to go until 12 o'clock, but for some who wish to stay a little bit longer, and some who need to go and do some voting, do we have concurrence that if we can continue with the questioning while we have the witnesses here, those who need to can go and vote? Is that okay with the committee?

Mr. Preston Manning: I really think we have to give more time to these witnesses. I thought we were here until 1:30 p.m.

Mr. Reg Alcock (Winnipeg South, Lib.): Preston, I'll stay.

Mr. Preston Manning: Okay.

Ms. Judy Sgro: I think the intention was that we would have witnesses until 12 o'clock or fifteen minutes after, go over to do what we needed to do, and then come back. It was really a recess of sufficient time—about half an hour, wasn't it?

• 1200

The Vice-Chair (Mr. Rob Merrifield): That was the original plan, but we'd like to get the questioning through, if we possibly could, and we have members who are willing to stay to make sure that is able to happen.

Is that all right?

Some hon. members: Agreed.

Mr. Preston Manning: It'll be in the transcripts for all of us to see.

The Vice-Chair (Mr. Rob Merrifield): Yes.

Mr. Lunney.

Mr. James Lunney (Nanaimo—Alberni, Canadian Alliance): Thank you, Mr. Chairman.

Just briefly, I also certainly identify with those who suffer from disabilities. I have a nephew with Down's syndrome. My sister has raised him, largely at home. He has a little job in his community, and contributes. He's learning to play the guitar. He's in his twenties now, and he's certainly a valued member of our family.

With regard to these technologies, I heard you reference your concern about the regulations having an “enablistic” bias in the application of the technology. I'm wondering if you can expand on the concerns you foresee in the technology application.

Ms. Kathy Marshall: I guess the main focus of that particular point is to make sure that when Canadians are going through the process of new reproductive technologies they're provided with information that's informed consent rather than information that would lead to a detriment of a person with a disability in any way, shape, or form.

Mr. James Lunney: Thank you. I just wanted to touch base on that.

Ms. Kathy Marshall: No problem.

The Vice-Chair (Mr. Rob Merrifield): Ms. Wasylycia-Leis.

Ms. Judy Wasylycia-Leis (Winnipeg North Centre, NDP): Mr. Chairperson, I have a lot of questions, and I know I'll get cut off, so let me first ask a couple to Kathy and Audrey.

The Vice-Chair (Mr. Rob Merrifield): I'm a gentler chair.

Ms. Judy Wasylycia-Leis: You're gentler; great.

Mr. Reg Alcock: Good thing I'm not the chair.

Ms. Judy Wasylycia-Leis: That's for sure.

First of all, to Kathy and Audrey, we really appreciate you coming today. I think this is the first chance we've had to actually get this perspective. Often when we're dealing with the issue of genes and reproductive technologies the interests of science to combat difficult medical conditions is often confused with people with disabilities. I think what you're saying today is let's be careful that in this rush to pursue the promise of science we don't do something in law that will actually make people with disabilities second-class citizens.

My concern is...and I hear your recommendation for adding to the preamble. I think we already have that paper. I have so many papers, I'm not sure, but it must be here, because I know CACL had sent something in a while ago. So we should look at that carefully.

The other issue is the prohibition on disability diagnosis, which Mr. Manning mentioned. That's certainly something I've heard before from communities in Winnipeg. I guess my question is...and you need to think about this and tell us whether we should recommend a prohibition in terms of disability diagnosis, or, if not that, when we're dealing with the prohibition on sex diagnosis with its qualifications around medical conditions, whether or not the way that's worded, never mind dealing with the separate prohibition on disability, still creates that notion of an inferiority regime for people with disabilities, and how we can address that.

Finally, my question on this issue is with respect to counselling, and ensuring that when we're dealing with informed choice or informed consent we find a way through this bill or regulations to have people representing organizations that represent people with disabilities be part of that counselling process so that parents and families can understand fully both the challenges and the joys of raising a child with a disability like Down's syndrome. I wouldn't mind a comment on that.

To Paul and Mark, I totally agree with you that it's government's responsibility to enforce regulations—to enforce, to supervise, to have a surveillance capacity, to practise, and to apply all consequences for abrogation of laws. But I think we're wrestling as a committee, partly because—this is my own judgment—we haven't seen a very effective, proactive regulatory response from Health Canada on other issues. We've seen actually the offloading of responsibility to a stand-alone agency in the area of food protection with the Canadian Food Inspection Agency.

Although that's perhaps not quite as removed and distant as what is being contemplated here, it still does raise that spectre of passing authority to another body that may have a conflict of interest and that is outside the control of government, of Parliament, or of whichever model we end up choosing.

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So I think we need to hear from you on how we do what you think needs to be done in this current political climate, where we've moved from a real precautionary model to a risk management model on many fronts.

The Vice-Chair (Mr. Rob Merrifield): Just before you start your answer, Ami Wise is now at the table as well. I think he's from the Canadian Association for Community Living. We didn't have time for his presentation, but he's certainly here and willing to take part in the answering.

Go ahead.

Ms. Audrey Cole: I'm not sure I can remember all of the questions—I don't hear as well as I used to—but one thing that stood out for me was the issue of at what stage, and how, in the process of counselling a person would or would not learn about disability. That, of course, is where for most of us, from what we understand by current experience, the eugenics bias tends to show up. If you use only what the textbooks say about Down's syndrome, it doesn't really relate much to life and how people live.

There certainly is an unconscious bias against conditions such as Down's syndrome. Whether it's deliberate or not, it's there. It's ingrained in society. It's all around us, and it's certainly felt very strongly by people who live with that label and all its connotations. So I think the informed consent issue, which we've both stressed, is the key issue. Consent is not informed if the image that's presented about possible consequences is not a fair image and it doesn't reflect real life with a disability.

That's critical, and I don't know how you get that. It doesn't work voluntarily; let me put it that way.

Think about it; although we've had people around this table say, yes, we have a relative with Down's syndrome, around the world at large and in Canadian society most people don't know somebody with that kind of disability. We're talking about relatively few people in society. The implications are not just for that one family.

We're not saying that we should force a family to raise a family with disabilities, and that we should tell them, you know, other people have done so, and there's no reason why you shouldn't do so too. That's not what we're talking about. We're talking about taking out the unconscious bias that is there in that process, particularly, it seems, when people seek counselling, which they would in this context. In the context we're talking about in this legislation, people would be seeking that information. We find in society at large that when people seek counselling with respect to having another child or whatever, or having their first child even, they seek counselling for identification of genetic anomalies. Those people are the ones who tend not to proceed if the findings are positive. The people who seem to manage very well are people who find themselves with whatever they've produced.

It's natural for humans just to cope. We love our kids, disability or not, with a fierceness that takes us through a lot of things. Those are not the bits of information that get filtered into that counselling process, and I think that's our major concern. There is a bias, whether we want to admit it or not. There is a eugenics bias. It's prevalent and it's a fact.

The Vice-Chair (Mr. Rob Merrifield): Thank you.

Any others?

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Dr. Mark Winfield: I think your question really focuses on the issue of the institutional form the regulatory agency should take. Actually, it sounds as though this is an issue that one of the papers, which I'm going to file with the clerk, addressed for the Walkerton inquiry we did. It looked at the different options.

It seems we're really talking about three possibilities here. The first is direct regulation by the department, where the Department of Health is the regulatory agency; officials of the department make decisions about approving or not approving; inspections are carried out by officials of the ministry of health; and enforcement actions are taken by the department.

The second possibility is the notion of an independent regulatory commission, something comparable to the CRTC or the National Energy Board, where you would have an actual regulatory decision-making body that sits as a quasi-judicial body, where there are appointments with fixed terms and they make the decisions on whether or not to approve certain activities. It's not uncommon for them to have their own investigation and enforcement staff, but they remain part of government. Still, there's an independence there as a regulatory agency.

The third option is the notion of what's termed an “agency” model, or a special operating agency, essentially the model that is pursued with the Canadian Food Inspection Agency or the customs and revenue agency. That's quite different from a regulatory commission. There typically you do not have a quasi-judicial body making policy decisions. You simply have a chief executive officer who acts as president of the corporation and is responsible for its day-to-day administration but is supposedly taking policy direction from the minister and from Parliament.

In this case, I would be inclined to argue very strongly against the use of an agency model like the CFIA. I think there are really serious problems of accountability for policy decisions that go with the agency model, which I think would make it a very undesirable model in this case. Clearly, policy decisions need to be made in this context that will profoundly affect the values and lives of Canadians. Therefore, it is essential that the accountability framework for those decisions be clear.

That I think leads to two options. Either the department is the regulator, where the minister then becomes the very clear focus of responsibility and accountability, answerable to Parliament for his or her decisions, or there is a regulatory commission, again where there's a very clear focus of accountability for the decisions made. The advantage with the commission is that it does provide some measure of independence from the department. It insulates the decisions from day-to-day politics. It also provides for a clearer institutional focus on the specific issue—in this case, of reproductive technologies—and allows the emergence of a body with specific expertise and sensitivity to the policy issues that might arise.

The one caveat with regulatory commissions is that they do have a tendency to form very strong relationships with the regulated community. We see this with the CRTC. We see this with the National Energy Board. So it is essential, if one goes down that road, that you provide mechanisms to ensure that members of the public and those who are affected are able to make effective interventions in the regulatory process. You need to have structures that ensure that they will have standing in the regulatory hearings, structures that will ensure that they are resourced to be able to intervene effectively in the process, with access to legal counsel, expert advice, and those kinds of things.

I think those are the choices Parliament really faces in terms of how it might structure the implementation of a regulatory regime in this area.

The Vice-Chair (Mr. Rob Merrifield): Thank you.

Madame Scherrer, if we keep the questions short and the answers shorter, we can get them all in.

[Translation]

Ms. Hélène Scherrer (Louis-Hébert, Lib.): I will speak in French.

[English]

I'm going to give you some time.

Mr. Ami Wise (Project Officer, Canadian Association for Community Living): I'm actually just wondering if I can add one quick note to Audrey's comments.

The Vice-Chair (Mr. Rob Merrifield): Yes, go ahead.

Mr. Ami Wise: Not only is there a eugenics bias in Canada; it's also a closet issue right now. The general disability community is 4 million and growing, and we don't know about it. It's a hidden issue.

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On the outside, families who have a member with a disability may function, and may seem like any other family, but families deal with things that we don't even know about. It's not exposed. It's not out there.

So education on what's going on in these families is part of the issue. It's just not exposed. It's a closet issue right now.

I just wanted to add that.

The Vice-Chair (Mr. Rob Merrifield): We appreciate that.

Madame Scherrer.

[Translation]

Ms. Hélène Scherrer: Thank you, Mr. Chairman.

It was quite difficult for me to listen to the presentations this morning. They have opened two completely separate drawers in my head. There is, of course, the legislation aspect, but there is as well another dimension that gets to me emotionally. I have never before considered the issue from that angle.

I am a qualified social worker and I have worked in that area. No one in my family is suffering from Down's syndrome, but I have worked quite often with severely handicapped children. There was not a single day at work when I was not able to recognize the richness of these people, to sense the scope of their values, to see that their outlook on life was so different, as well as their way of life, and they were able to touch me and to move me deeply.

On the other hand, there was not a single day when, coming back home to my children, I would not thank God that my children had no deficiency and that they had everything that God had given them in order to be able to enjoy life fully.

I am probably amongst those who recognize the value and the richness of this community and these families who are living through such situations. However, I cannot understand why we would not give to scientists all the tools that are available to help them ensure that children are born with every possible benefit and that they are not suffering from any deficiency, in order for them to enjoy life fully. If I was given the choice, I would like that everything possible be done to ensure that the child that I am about to give birth to be a healthy child with the maximum potential.

Here is my question. What do you think of amniocentesis, which allows, at the beginning of a pregnancy, to detect Down's syndrome and to give a choice to the parents? As you know, the majority of parents choose abortion when they learn that their child will suffer from Down's syndrome. Do you agree with that? I have some difficulty understanding your position, but I know how important it is to recognize deficiencies. I understand that it is important to recognize the value of these families and these people, but I do not understand that one would not do everything possible so that, in the case of assisted procreation, parents could choose that their child would receive at birth everything that it is possible to have.

[English]

Ms. Audrey Cole: I think the key issue in all of this as we look at people with disabilities is this: By which standards do we judge the quality and value of their life? The life of someone who's always had a disability, and the means by which that person would assess the value and quality of his or her life, is clearly quite different from the means by which somebody who hasn't lived with a disability would assess the value of his or her life. I think that gets mixed up—and I'm doing this before I come to amniocentesis—in this whole process.

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I'll say quite bluntly, I don't particularly feel or believe I consciously would want to have a disability. I don't believe I would. But I'm basing that on the fact that I haven't had one—not one such as Down's syndrome, for example, that could be identified prior to birth.

My son has never known anything else, and he has a wonderful life. He doesn't know that it's a disadvantage not to be able to speak, not to be able to do certain things. He makes the absolute most of his life that he can with what he has. That's surely what all of us do. So I think we fall into a trap of assuming that because we wouldn't want it ourselves it's not okay for the person who does have such a condition.

The biggest problem for people is the lack of recognition, the lack of equality, and the lack of dignity that often characterizes how we support and don't support people with disabilities. So when you come to the issue of amniocentesis, we're not necessarily saying that nobody should be able to have amniocentesis. If there's a detectable condition that could be in some way alleviated, or the consequences of it could be minimized in some way, then, yes, I think people would quite naturally want that to happen. But until there are cures or procedures we can use to help a fetus in that condition, we have to recognize that, really, amniocentesis is a tool of eugenics. Until we have something that can say, okay, let's mix these genes up and there's no Down's syndrome here.... But we're not at that stage, and we probably never would be, because by that time the genes are there. The stuff is there. So we're not likely to reach that point.

I use Down's syndrome as an example because it's the obvious one to use. Yes, most people do abort. I've seen some figures that say as much as 93% abort. Our concern is, have they made that decision based on the knowledge of living with a disability or based on assumptions from their standard, their means of measuring standard of what their life would be, what the quality of their life would be? Have those been the standards by which the image has been presented that leads you to a decision? If so, then that's not informed. It's not an informed decision.

It's a tricky area. Somebody in a group I was in the other day accused the CACL of being simply pro-life and anti-abortion, but that's never been an issue in our organization—never, ever—and I don't know of anyone for whom it is an issue.

The Vice-Chair (Mr. Rob Merrifield): Thank you very much. We're going to continue so we don't lose all of our time.

Mr. Manning.

Mr. Preston Manning: I hate to be bouncing back and forth. On the one hand, we have this very humane life issue, and yet I do want to ask some technical questions on the regulation, too.

I first of all would just like to say to the environmental lawyers that a number of the witnesses who have come before us have drawn the analogy between this field of assisted human reproduction and the environment. It's one of these areas where there's almost joint jurisdiction; both the provinces and the feds have responsibility in it. So I do think there's a lot to be learned from your experience that's applicable to this field, and we thank you.

I also want to take this chance to pay tribute to the Pembina Institute. I think I had a wild debate with your founder in Drayton Valley in about 1988, when we were both starting out. But I have watched your progress, and you actually have friends at court here; Rob is your MP. So we appreciate the contribution you've made.

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My first question is, let's assume that it's not a good idea to delegate enforcement to non-governmental actors, but there are a lot of things in this act still that could be delegated. Not necessarily the enforcement function, but a lot of other things could be delegated. Could you not suggest ways, if you are going to delegate certain functions—perhaps data collection or analysis—to other organizations, to hold them accountable?

In fact, Mark, couldn't I just take your list on page 2 of your brief, where you say the problem is that for a lot of these organizations the privacy legislation doesn't apply, there are no rules to guide them, and they are not required to audit, and then just require those? If you're going to delegate these functions, you could put that in a statute, and then these are the things you do to make non-governmental actors accountable. Would that not be a way to address that problem?

Dr. Mark Winfield: Specifically in the context of the entities that have been created in Ontario, we are actually on record as saying that is precisely what should be done. I think in this case it would be absolutely vital, particularly in the area of protection of privacy and access to information.

Our concern, though, is where we have seen these types of delegations occur, even for non-regulatory functions, the provincial legislature or parliament have tended to overlook this matter. Clearly, yes, certain aspects of things could be delegated to non-governmental entities, but then it becomes essential that we provide adequate accountability and oversight and the backstopping framework to do that. The concern is that the experience we've seen so far is that governments have in general failed to do that.

Mr. Preston Manning: I would just suggest to the researchers, when it comes to working on the draft, that we take this list and include it as conditions of delegation.

The second question is on equivalency. I think you can appreciate that the politics of this bill.... The equivalency section is in there partly because the federal government anticipates some of the provinces are going to regard this statute as an invasion of provincial jurisdiction. That is particularly true in the case of Quebec, but it's not just Quebec. They anticipate that the only way you are going to solve this, in part, is if that province passes equivalent legislation, then they'll recognize it.

That raises the same question with respect to equivalency. I gather that is in here. If you are going to have equivalency agreements...and I don't think the choice is you are or you aren't; the question is, how can you make them work? It seems to me that your brief, in identifying all of the problems.... If we address those and say, well, let's make sure there is open accountability, let's make sure the equivalency agreement is public, and let's make sure there's an audit of the results, am I not right in saying you could make these equivalency agreements work if you took into account the experience you have encountered in the environmental sphere?

Mr. Paul Muldoon: I think you've phrased your question in a way that I could just say “yes” to in the sense that there are provisions you can include to ensure the accountability and the transparency and to overcome the concerns you raised. So it's not a question of “if”, because I do think they could be a means to facilitate implementation, to facilitate cooperative federalism and all that. Instead, it's how you do it. That's why we did specifically hand out the report from the environment commissioner. I think it's clear evidence of what has gone wrong and how to fix it.

I just want to mention that the provisions in the proposed legislation were really the subject of the environmental commissioner's report. Section 10 of the new Canadian Environmental Protection Act gives some examples of how that was fixed. We would suggest you have to go further, but it does provide good examples of how they've tried to address it in that piece of legislation. I would suggest you have to go further, but it is certainly a good start.

Mr. Preston Manning: I have one last comment. This is not a question but a suggestion for a project for you environmental lawyers. If this committee had some money, and we had the right to give it out, I would pay you to give us a brief on this. But we don't have any money, so this is a hollow offer.

Oh, we do have some money! We're going to take notes here.

I'm most familiar with the Alberta legislation, environment and energy. As you will know, in Alberta 30 years ago there was no environmental ethic in the regulation of energy. If environmentalists showed up at an ERCB or PUB hearing, they were considered kooks. It was, “Why are these people here?” And now, 30 years down the road, an environmental ethic is embedded in the Alberta statutes and in the regulatory machinery. Environment has standing.

• 1230

You know all about it, how the environmental ethic has gone from zero recognition by the legislative and regulatory system to a very prominent part in it. It would be very interesting from our standpoint if somebody would document how that ethic got from zero to where it is now. There has been public support for it, certainly, but what were the technical steps whereby one year the environment had no standing in front of the ERCB and the next year it did? What were the legislative and regulatory changes whereby the environmental ethic went from zero to where it is today?

I think we're facing the same thing, for example, with respect to life in this area of reproductive technology. How do you go from a fuzzy concept that people are just vaguely concerned about to it having standing and recognition by the system?

I just lay that out as a suggestion. If someone could tell us the story of how it happened within the environmental sphere—and maybe there is a study like that—I think it would be very instructive, from our standpoint, to see how you can embody some of these ethics about reproductive technology in the legislation.

The Vice-Chair (Mr. Rob Merrifield): Do you want to comment?

Dr. Mark Winfield: Sure.

Oddly enough, a large chunk of my doctoral thesis actually deals with the evolution of those issues in Alberta. We'd be happy to make that available.

It's also part of the process that at some point the legislature becomes seized of the issue itself and makes the decision that it's going to express these values in the legislation, both the environmental ethic in terms of the substantive protection of the environment and this decision that we're going to make provision for the participation of the public in the decision-making process. There really is a point at which parliamentarians need to say that society has reached a point where we need to crystallize the issue and articulate it in legislation.

Mr. Preston Manning: I would be very interested in seeing any study that traced that history.

The Vice-Chair (Mr. Rob Merrifield): And perhaps we'll get it at the right price.

Thank you.

[Translation]

Ms. Scherrer, it's your turn.

Ms. Hélène Scherrer: I come back to the other aspect. You talked about your own son, who probably has a full life and benefits from everything that is within is reach. We are probably talking here about persons who are not fully conscious of what they are missing and what they don't have and who fully enjoy what they do have.

Still, there are, among Canadians with deficiencies, some persons who are aware of their difference because of the people they see around them. If they had had a choice, or if they were given the choice, perhaps they would express the desire to have more capacities than what they do have presently.

I come back to this point because you seem to start from the premise that the people with disabilities have a well rounded life and that my opinion is merely a value judgment on the part of someone who is not suffering from that disability. If I am saying that these people are not happy, perhaps it is only my own judgment, but we must take into consideration—and I would like to have your opinion on that point—that there are people who do realize that they have limitations in some areas. Their disability may be less severe, but if they could do so, they probably would choose not to live with this disability.

[English]

Ms. Audrey Cole: I suppose so, but what I hear from people is that the burden of a disability emanates not from the disability but from the lack of support or recognition of the person as a person of equal value. It's the failure of society to provide appropriate school opportunities, to provide work opportunities, and to provide what's sufficient to live on.

• 1235

Generally speaking, people with disabilities live lives of poverty. Family members are penalized all of their lives because they have to put in so much of their lives to support the individual in a way that, as I think Ami said, doesn't happen in a family where there is no disability.

But that's a hard one to answer. We can only talk to the people who already have disabilities, and it's not my sense that most people with disabilities pine for a life without disability. That's not been my experience.

Ms. Kathy Marshall: Nor mine. I think within the scope of people's lives everybody has their own limitations, for whatever purpose that may be. Whether an individual was born with disabilities or whether a disability was acquired through some accident or some type of societal tragedy, I think it has to do with the perception of living the fullest life they possibly can in whatever capacity they choose to do that.

It's been my experience through both CCD and the Disabled Women's Network that all the members who are part of our organizations live very valued and full lives. There's a real fear amongst our community that components of this legislation will provide a eugenics bias. We will certainly provide to the committee some information on a prohibition against that.

Again, I think it has to be stressed that a disability needs to be viewed from the perception of a human characteristic, the same as sex, the same as gender, the same as race. You shouldn't be viewed as a second-class citizen in terms of living within different types of limitations, because we all do have limitations.

[Translation]

Ms. Hélène Scherrer: Ms. Cole, you moved me deeply. I would like to ask you a question. It is a very personal question, but I will still put it to you. You don't have to answer it.

Given the life that you have lived with your child and given the frustrations—and you are right, I do experience frustrations as well every single day, I look around me and I sometimes envy what other people have—you have been through, if it were possible for you to make it happen so that your son would not have had to live with Dow's syndrome, what would you choose?

[English]

Ms. Audrey Cole: It's very difficult to say, because my life experience now has been so full, for the last 37 years, of the presence of my son. So it's hard to make a guess as to what I would have thought had the opportunity been offered to me. I don't have any deep-rooted objections to abortion, per se, although there are ways it's used that I'm concerned about. For instance, I feel it shouldn't be seen as a birth control mechanism. But I don't have any deep feelings about that, and I don't have any religious biases in that respect.

So I really can't say. I was a late starter in the parenting business, and I can only say that I know it's enriched my life having a son such as I have. I know my son has enriched the lives of a great many people. I talk to many other families whose children don't have disabilities and not all of them can say that. Not all people can say that.

Let me just tell you one brief anecdote that really hit home to me. I know some people have probably heard me say this before, because I have said it in public many times.

Just a few years ago my husband and son and I were attending a funeral for my husband's oldest friend. A person came up to us, and my husband briefly introduced us. He was the son of another contemporary of my husband, so he was quite a bit younger than we were, in his late 40s, I'm guessing.

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He didn't shake hands with our son, but he looked at him and said, “How old is he?”. In the circumstances, I was taken aback, and without thinking I answered. And this man, a medical practitioner in the States, just said, “Ah, before amniocentesis”.

You see, that's the kind of thing that's at the root of my concerns. How could anyone say that to me and to my husband? How could anyone say that in the presence of our son, with no knowledge of his capacity to understand? But people do that.

It wasn't my intention to frame this whole issue in my personal experience, but the fact is, I do have experience. I have experience with the disdain with which people with Down's syndrome are held. I have experience with clear discrimination against my son in certain circumstances, education and all of those things.

So it's a fact of life. The disability is not the problem. That's basically my point.

The Vice-Chair (Mr. Rob Merrifield): Thank you very much.

I certainly appreciate the witnesses coming in today. We perhaps will call on you again if we need, but your presentations were very valuable. I certainly want to thank you on behalf of the committee.

We will suspend the meeting.

[Proceedings continue in camera]