EVIDENCE

[Recorded by Electronic Apparatus]

Tuesday, June 11, 1996

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[English]

The Chair: I see a quorum. Welcome to the third round table discussion of the Standing Committee on Human Rights and the Status of Persons with Disabilities. This series is intended to help members focus on and more clearly define some of the major areas of concern impacting on our lives and the implications for our human rights and the rule of law.

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As a result of the new technologies we're asking people to address, you'll be the third of our tables, which is a consultative mechanism in order to set the agenda for the fall.

Our first table discussions touched questions of new communications technology, essentially the new information age, its challenges, its opportunities, and its problems.

The second table addressed issues related to biotechnology, the ethical principles. I think, as one of our panellists said last week, it's not a question of genes, or of the science, or of technology; it's social, legal, and ethical consequences on our societal choices and values.

Just to give you some background, and particularly for the audience that is watching, some of the issues that were brought into focus were: the changing nature of the workplace and workers' rights; eugenics; gene therapy; DNA data banking; testing for treatable disease; issues of privacy, family medical records, confidentiality, control of those DNA banks, and the rights of the insurance companies and the health care delivery system. What about doctor-patient responsibility, relationships, and the potential for being caught in a serious bind, a breach? There was the reaction to scientific fact, norms to guide, what should be proactive, what are principles and principled, and what should be proscriptive.

Today, this third round table will round out that phase of our work as we gather more facts from experts on policy, legal and regulatory frameworks. I'm very pleased to welcome you here today.

I welcome Dr. Patricia Baird, who is a physician and pediatrician and a specialist in medical genetics. She was head of the department of medical genetics at the University of British Columbia, and she was involved both with services for families with genetic diseases and in developing research in genetics. Her work has focused on the distribution and natural history of birth defects and genetic diseases in the population, as well as on bioethics. She has been a member of several international and national bodies, in particular: the National Advisory Board on Science and Technology, chaired by the Prime Minister; the Medical Research Council of Canada; the ethics panel of the International Pediatric Association; the ethics committee of the International Federation of Gynecology and Obstetrics; and, for many of us who watched with great interest, she headed the Royal Commission on New Reproductive Technologies, which reported to the government in 1993. Of course, she's had honorary degrees and so on. It is with great pleasure that I introduce her to you as our first speaker.

To outline the procedure, we will ask each of you to make a five-minute presentation, following which the members of the committee will have a free interchange with you in the less-than-formal sense. However, we will start with the member from the opposition party, the Bloc Québécois,Mr. Maurice Bernier, who will be followed by Mr. Martin, who is replacing one of our members - welcome to the committee - followed by our own members of the House from the Liberal party who will determine the speaking order. Then we'll have a general freedom of exchange that will include the panellists.

Would you be good enough to start, Dr. Baird?

Dr. Patricia Baird (Chairperson, Royal Commission on New Reproductive Technologies): Thank you very much.

I'd like to preface my remarks by saying that I am by training a pediatrician, so I am not a lawyer and I'm not an expert on the legal aspects of human rights. The other prefatory remark I'd like to make is that my perspectives come out of the experience of being on a commission that consulted very widely. We heard from over 40,000 people before we were through.

I think how fertility treatments or genetic treatments or diagnoses are offered in a population raises ethical and human rights issues. If they're unproven, those techniques should be available only within the context of research trials, with full disclosure and informed choice to participate by the women. That's because the ethical justification for exposing women to unknown risks for unknown benefit is that data are gathered specifically for the safety and benefit of future patients. But there are also proven techniques where there's evidence that the procedure works and that risks are manageable.

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If such techniques are viewed as luxury items and not part of a service that should be underwritten by society, then only those people with sufficiently high income will be able to afford them. That's unjust, given that some technologies bring important benefits if they are used in an appropriate, evidence-based way. Both societal interests and individual interests are served by having those services available within a publicly supported system, with unbiased information about them provided to individuals so they can make informed choices about whether or not to use the technology.

However, it's worth noting that the area of infertility treatment is increasingly practised outside the publicly supported system, in private clinics. Private infertility clinics are usually owned and operated by physicians. Physician ownership of medical facilities providing services has been shown to increase the use of those services if the physicians are the ones in a position to recommend that they're needed. Patients at private clinics do pay directly for certain services - for example, the IVF itself - but there are many other costs involved, and in a country like ours, with a publicly supported health care system, the rest of the citizens foot the bill.

As well, in the current unregulated situation, without clear social policies and accountability in place, individuals currently are able to avail themselves of technology used in a way that exploits or harms others. For example, a post-menopausal woman who can afford it may buy a young woman's egg to be implanted in her, or a well-off couple may pay for IVF surrogacy or they may pay for sex selection.

Such decisions to use techniques are often framed as private decisions. That's not true. They aren't private because the consequences affect other people, not just prospective parents. They affect the children born as a result. They affect other individual women, women as a group, other groups and our society, our community as a whole. The way they're used can entrench existing inequalities.

It's because of those consequences, I think, that society has legitimate ground - in fact, it has a responsibility - to regulate genetic and reproductive technology uses. Having no policy is a policy. One form of social decision-making - that is, the market - is operative, rather than another, regulation.

If those able to use the technologies are people with money, obviously they're going to steer uses to their particular interests, paying for what they want. Yet we don't allow people to be owned or sold because of our collective conviction that it would negate the value we attach to human beings. In the same way, selling eggs, sperm, embryos or fetal tissue has implications for how we view the human person. Allowing a commercial value for conception and pregnancy in paid, pre-conception arrangements brings an undesirable social understanding of reproduction.

Clearly, exploitive and discriminatory misuse of reproductive and genetic technology is possible. The danger is not so much that regulation will interfere in choices to use reproductive and genetic technology, but that it won't. So it would leave vulnerable citizens and the public interest undefended against the market. It's for that reason that many countries in Europe have put in place legislation and regulation.

In the past, the functions of regulation and monitoring have been assumed through self-regulation by the medical profession. It's true that many of the technical and quality control and specialized training aspects can only be regulated by practitioners in the field. Self-regulation is necessary, but it is not sufficient.

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As we went across the country, the commission heard markedly increasing dissatisfaction with medical self-regulation as the only mode of ensuring accountability. Many of the policy decisions are not medical and the self-regulating medical body is not best equipped to assess the social, ethical and other implications of technology uses.

As you may know, the commission recommended two things: one, that boundaries be put in place with federal legislation to prohibit certain things; two, that a national licensing and regulatory body be set up to guard citizens' interests by ensuring regulation and accountability. It would manage technology use and also act as a focus to facilitate public awareness and input on the choices that are going to continue to confront us.

The body should be at arm's length from government, be drawn from different sectors, and be transparent in its process. It should report to Canadians through a report to Parliament annually, and facilities that provide certain reproductive and genetic services to people should be required to be licensed and to comply with certain conditions.

In conclusion, I think it is very important that we put in place such regulatory mechanisms soon, because inequitable, exploitive and discriminatory use of these technologies is going to affect the kind of society that we and our children have.

Thank you.

The Chair: Thank you very much, Dr. Baird.

David Sutherland has been the director of Computing and Communications Services at Carleton University. He has headed the organizing committee for the National Capital Freenet and is currently chairman of its board of directors and president. This is a free, computer-based, community-run, information-sharing network that adds a community, non-commercial dimension to the electronic highway. It has over 56,000 members. He's a member of the industry minister's Information Highway Advisory Council and co-chair of the council's access and social impacts working group.

I think the role of this workshop was to consider some of the human dimensions of the information highway. Am I right? Good.

Among the issues it addressed were the following: how to protect the privacy of personal data on the information highway while also respecting everyone's right to reasonable access to information; how to strike a balance between limiting the dissemination of offensive material, such as hate literature and pornography, while considering everyone's right to freedom of expression; how to ensure universal and affordable access to the information highway and remove barriers to service delivery.

The question we're going to ask you, Dr. Sutherland, is whether there are some barriers that should be in place, never mind access only. What are the constraints of the prescription? It will be a pleasure to hear from you.

Mr. David Sutherland (Director, Computing and Communications Services, Carleton University): Thank you for the opportunity.

My experience is drawn from my experience with the National Capital Freenet, as mentioned a free service that we started in 1993 to provide access to the Internet for everybody in Ottawa. It has since gone on to be the model for many other projects in the country. I think there are about 70 similar projects running throughout the country now. Also, my experience at the university and being challenged with some of the new technologies within the university campus has been an interesting development. Of course, the Information Highway Advisory Council that you mentioned did deal with the issues that you have outlined - issues of privacy that I think I will defer to Bruce Phillips' experience rather than mine. He's very aware of the work of the council. I spoke to him privately just before the meeting here and I think there have been some positive steps made, perhaps following up on some of the council's recommendations on privacy.

On the issue of content regulation, much has been said in the press about bad behaviour, let's say, within the Internet, its use for disseminating objectionable material such as hate literature and pornography. The Information Highway Advisory Council developed a series of recommendations relating to control of this kind of content. It took what I think is the best path. I recommend it. I really think it's the best way to go.

It didn't suggest that a specific regulatory framework be established. It endorsed the fact that there are existing laws that constrain freedom of speech and freedom of expression in the country. These existing laws do apply to activities within this context.

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It went on to recommend that an educational program be established to remind people that this was the context in which they were behaving. It also suggested that the liability of people carrying information on the Internet be clarified, because that's an outstanding issue at the moment. There is very little case law relating to responsibilities of carriers. At the moment, everybody who is responsible for doing this, if they think about it for very long, is very concerned that they're going to get drawn into some long lawsuit, thereby establishing the case law at their expense.

They recommended that the programs of people who combat the propagation of hate literature, such as Ken McVay, be supported to ensure that the allegations of these hatemongers perhaps don't go unanswered. The people who are involved in the Internet service provision should establish a model code of ethics to set a target, a standard, for the way in which they would manage their systems. They suggested that a complaint mechanism be established and that technology be developed to allow people to censor themselves, or for schools, for example, to limit the kind of material that could be brought into the school. They also suggested that technology be developed to assist in the tracing of the source of any illegal material that is put on the Internet so that you can trace it back and hold accountable individuals who may be responsible for engaging in illegal activity.

They went on to suggest that international agreements might be an appropriate thing to enter into as well, because given the borderless nature of this environment, as we have seen, it is not possible for a country to limit the activities of its own citizens when information can be placed on a server outside the national boundaries.

On the international agreement side, though, I have put before you a quandary. The standards we would set would be highly different from the standards of another country. For example, a server in this country that advocated unfettered democracy, let's say, and how to establish a democratic state may not be welcome in all countries in the world.

I also suggest to you that if we were to get the copyright clearance, we might be allowed to put up the The Satanic Verses from Salman Rushdie. We would not find that a particularly bad thing to do in this country, but it would be highly offensive to people in other countries. So international agreements would be extremely difficult to reach.

I echo the comments of Pierre Mackay from April 30, where he talked about literacy being an important element to consider, that people have to be aware of and have to have the ability to participate in the new technologies. I think we have to put in place programs to ensure that there's a broad capability within the country for people to get involved.

So access and participation are clear issues. They echo the National Capital Freenet objectives actually. When we established the system back in 1993, we said that part of its objective was to be an experiment in citizen literacy, to make everybody in Ottawa, as much as possible, aware of what this new technology could do for them. The issue of universal access to telecommunications services is one that has daunted the regulators since the beginning of the telephone systems and it will continue to be a serious issue as the technologies develop. At what level do we say what is the minimum standard of service that we will insist perhaps be available throughout the country? That's something I think the regulators will continue to grapple with for some time to come. We made some specific recommendations within our report on how that might be approached.

Specifically, I think the services that are developed with new information technologies, general ones, have to take into consideration the special needs of people who are disabled. The disabled, as you have heard in previous testimony as well, are some of the people who stand to benefit most strongly from the development of these technologies.

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The Chair: Thank you very much, Mr. Sutherland.

It's my pleasure to introduce you to Marcia Rioux, who is the executive director of the Roeher Institute, Canada's national institute for the study of public policy affecting persons with disabilities. She is also an adjunct professor of social policy in the Faculty of Environmental Studies at York University. She has a number of advisory roles. In particular, she represents Inclusion International on the International Bio-Ethics Committee of the Human - and I love that word - Genome Project. For those of us who don't know that word, it has something to do with genes. You'll tell us about that. This is at UNESCO.

She has had experience as a director of research at the Canadian Advisory Council on the Status of Women and is a senior researcher at the Law Reform Commission of Canada. She's specialized and has published many articles and monographs in public policy, medical journals and government publications. She has acted as the director of research and principal investigator on studies of poverty, social well-being, disability income systems, violence and abuse, and equality and difference.

We're looking forward to your forthcoming book, which is The Equality-Disability Nexus. I think that will help us look at the paradox we face with the changing dimension that technology brings and in stretching, as I said sometime recently, the goalposts on equality.

We look forward to hearing from you.

Ms Marcia Rioux (Executive Director, Roeher Institute): Thank you very much.

Thank you for inviting me here today. I think this is really a very critical issue for people with disabilities and I think the signal you give out by having these three round tables is exceedingly important to the people with disabilities in this country.

I'm going to make three points about areas in which I think it's important to have some kind of regulation in terms of ensuring that the rights of people with disabilities are respected in this area.

The first thing I would suggest is that there is a need for some kind of overarching framework, and I think the human rights framework is the principal framework that should be used. There are several reasons why I would argue that we need to extend human rights legislation, both nationally and internationally, to include genetic information.

One is to ensure that there is no discrimination based on disability generally, and that includes both access to the technology in the terms that Dr. Baird has spoken about and the negative consequences of the technology on people with disabilities.

The second reason I would argue that we need to have an overarching human rights framework and specific protection for human rights is to ensure that there's not acceptance of an economic efficiency argument for the research and the application of biomedical technology. There are, at the present time, quite a number of people doing gene research who are arguing that it is in fact more efficient economically to prevent disability than it is to keep people in the community with the supports they need to be able to live inclusive lives.

The third reason I would argue for having an overarching human rights framework is to guarantee and protect an underlying respect in this country for biodiversity in the human population. I am not sure that we're totally clear on what we're doing as we do this research and I think we should think about biodiversity as a basic principle.

There's no doubt that genetic information provides a set of genetically determined diseases and disabilities that can impose costs, not only on individuals but on those institutions, including health care systems and the state, that bear responsibility through insurance systems and entitlements to provide disability and disease-related interventions.

This information can provide these institutions with a system of categories by which to structure the allocation of benefits and entitlements. I think there's an underlying assumption in that system that genes are the cause of - at least the cause of some part - of the fiscal crisis. So we need to eliminate those genetic conditions that cause that increase in cost.

I'd like to point out that the UNESCO Bio-Ethics Committee on the Human Genome, for which, as you mentioned, I'm an observer on behalf of Inclusion International, has chosen as their principal project an international declaration on the protection of the human genome. While it's important that there be regulation, and I think even a regulatory framework, for the prohibition of the patenting of the gene, which is the singular concern of the UNESCO committee, I'm afraid they've made little, if any, headway in addressing the protection of human rights in light of gene research and its application. In fact, in the second draft of the international declaration they've developed, they stated:

States shall ensure the intellectual and the material conditions favourable to research on the human genome, in so far as this research contributes the advance of knowledge and to the prevention of disability and disease.

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You can understand that even international ethics bodies are deliberating without regard to the discriminatory impact of their work by including the elimination of disabilities as one of the primary rationales for their work.

The Chair: Is this information available, and could you send us a copy?

Ms Rioux: Yes, I could.

The Chair: Thank you very much. I think it would be useful to all of us, including the panel, which I am sure would find it interesting to look at.

Ms Rioux: The second area I'll deal with - and we can further discuss the UNESCO draft declaration later - in which I think there's some need for regulation for a legislative framework is to prevent discriminatory access to public benefits. I would include in this both health benefits and income security benefits.

At the Roeher Institute we are involved at the present time in a research project on the implications of genetic research and its application on those two areas of social policy for people with disabilities. While we haven't been able to complete our work at this time, we are able to identify a number of areas where there are already indications of the use of genetic testing, which may prove to be discriminatory, specifically to people with disabilities. These include access to health care, rationing of health care, insurance discrimination, wrongful-birth suits, obligation of the state to provide social services, and refusal to employ people with a specific genetic make-up.

We have a number of examples of cases in each of those areas. Here, I think particularly of a young man named Terry Urquhart, who you probably read about in the newspaper, who, because of the identification of trisomy 21, was refused to be put on a list of eligible candidates for a lung transplant. This was just several months ago. He actually had to go public and get a fair amount of public support in opposition to the hospital to get put on that list.

There are a number of cases where people have been denied access to landed immigrant status in Canada because of the identification of their genetic condition. In a number of these cases it was trisomy 21.

So I think it's important, in terms of regulation, to ensure that the principles of the Canada Health Act and of the CHST, the Canada health and social transfer, are sufficiently clear to prohibit those cases where health and welfare programs are denied on the basis of identification of genetic conditions, and in particular, it would need to be spelled out very clearly what universality means and to ensure that universality was not interpreted in such a limited way that provinces could deny those funds to people with disabilities.

Very quickly, the third area where I think we need to look at some regulation is the research and funding dollars that are made available in this field. It's obvious that genes may give us some truth, but genetic knowledge is only one of many truths, and the research and knowledge based on the paradigm that disability is a genetic condition rather than a social construct is very much overfunded by comparison to research based on disability as a social condition. I think it's important that this disproportionate investment of research and funding be addressed and that there be some kind of regulation to ensure that we balance the very real uneven research allocation at the present time. The genetic research, which is research into areas about which people know very little, should certainly not be determining the major expenditures in the field of disability, as it is at the present time.

Thank you very much.

The Chair: Thank you.

I'd now like to call on Mr. Rubin Friedman, the director of B'nai Brith Canada. He's had many positions in the federal public service: director of Community Support and Participation in Multiculturalism; executive director of the Japanese-Canadian Redress Secretariat; senior policy coordinator, Secretary of State Canada; head of the French-English language test development of the Public Service.

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I think he's dealt with a broad range of social policy issues from family and community, to violence, to immigration and citizenship, and he's had a long and active involvement in human rights and race relations.

I'm looking forward to hearing, as we all are, what Mr. Friedman has to say. He has a background in linguistics and speech pathology and is very interested in the aspect of the technology that brings into our homes some of the things that we would prefer to see disappear.

Mr. Friedman.

Mr. Rubin Friedman (Director, Government Relations, B'nai Brith Canada): Thank you, Madam Chair.

It's good to be able to address this committee on this important topic, which I think should form the subject of some kind of follow-up by the committee. Let me explain.

First of all, we're dealing with the notion of the propagation of hate propaganda. This is something that has been of concern to the League for Human Rights of B'nai Brith Canada for many years. In many ways, the Internet is simply another technology, another means for spreading a message that has been spread before by other methods. In some ways, many of the challenges we face with the Internet we have already faced in the past and still face with other kinds of technology.

In order to give you an idea of the problem, I have here three publications that have come into the country and that have been classified by Revenue Canada as hate propaganda. We don't have a clear idea of the size of this flow, but obviously there are many documents that flow over the border from the United States. It would be impossible for Revenue Canada to monitor the flow of every document over the border. With the Internet, they would have to monitor the flow of electrons over the border, which gives you an idea of the size of the challenge.

Hate propaganda has as its goal to promote the perspective on a group of individuals as being not human, inferior, and the proper object of hatred of a society. That is its intent and its purpose. People who are promoting hatred will use whatever means is available to them to do that. It's one of the difficulties in predicting what form hate propaganda will take, because individuals are free to tell lies or promote hatred about any particular aspect they wish. [Technical Difficulty - Editor]

The Chair: Please go ahead.

Mr. Friedman: I won't repeat what I've said so far, but basically our concern is the spread of hate propaganda over the Internet in the same way that we've always had a concern about the spread of hate propaganda through other means. We see that the response to hate propaganda on the Internet is similar to the response we've developed in other cases; namely, public education, an awareness of what exists; monitoring; community action; and cooperation between a broad range of individuals and organizations to monitor and counter the hatred that's on the Internet. We've cooperated on a number of occasions with Ken McVay and with other groups in dealing with individuals and groups on the Internet.

The other avenue to pursue is public education. We see a real need in terms of public education not only about hatred but about the Internet. We feel that many people become very concerned about hatred on the Internet, which is justifiable, but perhaps are not familiar enough with the technology or what appears there in order to develop in their own minds a sense that they know how to deal with it or that others are dealing with it.

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The Internet is international. Therefore, one of the things we strongly support is the development of international cooperation. I am avoiding the use of international treaties because I think we're very far from the notion of treaties for the reason that was mentioned before, that countries have very different approaches as to what constitutes objectionable material. Therefore, we're some distance away. On the other hand, it is the only way that this issue can be dealt with in the long term. Therefore, it is important and essential to begin talking about it now. The fact that countries have different approaches should not discourage us from undertaking these discussions even if it takes 10 or 15 or 20 years. Otherwise we'd have to simply assume that it would be impossible for countries to agree on this issue and perhaps logically on anything else. I don't see that as a fruitful approach to take.

Finally, we think there is currently no need for new legislation in Canada. Canada has a well-developed body of legislation to deal with hate propaganda in the Canadian Human Rights Act, the Customs Act, the Immigration Act and in the Criminal Code, sections 318 to 320 in particular. These sections define how Canadians view the promotion of hate literature. They establish a balance between the protection of the rights of individuals and the need for society to protect itself against the destroying force of hate propaganda, the force that divides people from each other.

So I think Canadian courts and Canadian law have done fairly well in defining what we value in Canada. I think it's such an extraordinary piece of legislation that we should promote this approach internationally, because it deals exactly with the conundrum of squaring the circle of individual rights and the rights of society and of minority groups to be protected from hatred. It's precisely for this reason that I think Canada should promote this vision not only at home but abroad.

At home I think this committee might want to look at the kinds of public education efforts and partnerships that the federal government would have a role in supporting, either through departmental efforts, through the Commissioner of Human Rights, or other mechanisms. I think that is the main substance of what I have to say.

The Chair: Thank you very much.

I'd now like you to hear from Professor Bill Black, who has been a member of the Faculty of Law at the University of British Columbia. His teaching areas include human rights and constitutional law. He's been a member of the British Columbia Human Rights Commission and was the director of the Human Rights Research and Education Centre at the University of Ottawa. Recently Professor Black was appointed as a special adviser by the British Columbia minister responsible for human rights, and his report on human rights in British Columbia was released two Decembers ago. Professor Black has carried out consultations and training for a number of human rights commissions across this country.

We're looking forward to hearing from you, Professor Black.

Professor William Black (Faculty of Law, University of British Columbia): Thank you very much. This committee has the daunting task of looking at the two aspects of new technology: access to the benefits of technology and trying to prevent some of the potential harms that can be caused by this technology. Some of the focus today has been on prevention of the harms, with which I fully agree, but I thought I'd focus for a moment on some of the questions of access.

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In today's age, computers, bank machines, etc., are becoming more and more a part of everybody's daily lives, and it seems to me that we have to worry not only about denial of access to new technologies but denial of access to, in a sense, old technologies because an activity has become computerized. So somebody may now have to use a machine where they could formerly use a bank teller. I think while that provides benefits, it provides barriers for some.

To give you one example, graphical standards such as windows and so on are touted as a great advance, but if you can't see the screen where you're supposed to move the cursor around, it's a step backward, not forward.

Therefore, I agree very much with what you heard in your first round table about the need to develop uniform standards to provide everyone with access to the benefits of this new technology and to make sure that those standards and the mechanisms are transportable so that when new programs come along, access continues.

I think it's very important to note that these kinds of barriers affect people with disabilities. I think it's also relevant to remind ourselves that it goes beyond the issue of disability. For example, in an aging population older people are subject to many of the same barriers that affect younger people with disabilities.

Literacy is a problem. In addition to trying to improve literacy, maybe we have to develop ways so you don't have to be so literate to use the technology. Also, these technologies, as Professor Baird said, cost money; therefore poverty can be a barrier.

I think the human rights principles we've developed, in particular over the past 10 or 15 years, serve us well in this new area. The challenge, rather, is not to develop new principles but how to apply those principles to new areas.

I'd like to talk about three possible areas. The first is development in federal legislation and in the administration of federal legislation. In reviewing what you've heard in other round tables, one area I'd like to flag is the issue of privacy, not only in the public sector, which is covered by the Privacy Act, but in the private sector as well.

Another I'd like to flag, which comes out of what I said earlier, is the need to develop specific standards to provide access to particular technologies.

You've heard today and in previous sessions about the question of whether you should take a sectoral approach, dealing with each area separately, or a broader human rights approach to these problems. I'm a strong advocate of a mix of the two. I agree fully with Marcia Rioux that broad human rights legislation is absolutely essential both to fill gaps in more specific mechanisms and to provide the standards that we use in developing those other mechanisms. But I also believe that sometimes it may be more helpful to develop, for example, particular mandatory standards of access that can help prevent discrimination before it occurs, rather than waiting for the program to appear and then a complaint to be made to the Human Rights Commission. Therefore, I think we have to develop the more specific approaches and also make sure the Canadian Human Rights Act and other similar pieces of legislation are broad enough to cover all of these new areas.

Grounds have already been mentioned. Does it cover perception of a disability or perception of a future disability arising out of a genetic make-up? I hope it does, but if there's any doubt it should be clarified.

Also, areas of activity covered may have to be expanded. Does the Human Rights Act presently, for example, cover the sale of a computer program that denies access to people with disabilities? Does it deal with discrimination based on gender arising out of surrogacy and reproduction?

So one area is the federal area. A second is the coordination between jurisdictions, both federal-provincial and international, and that's been mentioned to some degree. I hope we can talk more about it later.

A third one is the need for positive measures to provide access. You can have all the standards and laws in the world and it doesn't provide somebody in Newfoundland trying to switch from fishing to a higher technology occupation with the technology and training they need. It doesn't give assistance to a child living in poverty who's at a disadvantage in school because classmates have a computer at home.

I wish I had solutions to all these things.

I want to make a couple of suggestions for further consideration. One is that while I think changes in laws are worth examining, coordination of efforts is also crucial in this area. New technology has meant that some of the ways we've divided up governmental regulation may no longer be as sensible as they once were.

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So the Internet presents problems of both privacy and discriminatory material. For example, the problem of tracing, mentioned earlier, may be relevant to both. How can we make sure the Canadian Human Rights Commission, the privacy commissioner, the CRTC and so on are all on the same wavelength?

The second is that in those areas where the federal government, for one reason or another, including the Constitution, doesn't have the power to directly regulate, could it use its spending power to encourage further development in these regards? For example, could it ensure that any funding of new technology has as a condition that this new technology will have access for all people? Can it use its purchasing power to say it will only buy programs that have access? That may be a way to have an effect beyond your strict constitutional jurisdiction.

Thank you.

The Chair: I thank you very much.

We have now, not for the end but for the beginning of the next stage, Mr. Bruce Phillips. I am delighted to welcome him. He is the Privacy Commissioner of Canada.

Mr. Phillips, you've been listening to a lot of the concerns we have around privacy.

In his role as federal privacy commissioner he is a specialist ombudsman, accountable to Parliament, who monitors the federal government's collection, use and disclosure of clients' and employees' personal information, as well as handles requests from individuals to see their records. So he is sitting in the hot seat of trying to make some decisions in between what is, what isn't and what should be - and what shouldn't be, in particular.

As I think you all know, Mr. Phillips is an award-winning journalist whose journalistic career has spanned the spectrum in the media - written, spoken and visual. He has served in Washington as the minister responsible for public affairs at the Canadian embassy.

Mr. Phillips, we look forward to hearing from you.

Mr. Bruce Phillips (Privacy Commissioner of Canada): Thank you very much,Mrs. Finestone.

The first thing I want to say is how timely I think this committee's study is. In fact, if anything - and I mean this in no captious way - it even may be a little bit overdue, because the impact of technology on society as a whole is revolutionary. That's a cliché by now, but this is the first exercise I have seen by our parliamentarians to try to take a comprehensive look across the whole of society in terms of its relationship to all these changes.

Second, I'm very grateful to be here personally. As your officer of Parliament, I feel that one of my most useful functions is to advise you on things that I think are of moment in the privacy field. I hope you have come to share the view that I am occasionally useful to you.

The Chair: I had that opinion when we were doing the Broadcasting Act, and the CRTC, so it's okay.

Mr. Phillips: I was struck by something Dr. Baird said right at the outset of this hearing, that of course we don't approve of people being bought and sold in our society.

I would like to disagree, at least mildly, with that, Dr. Baird. We are in fact buying and selling large elements of our human personae. The traffic in human information now is immense. There is almost nothing the commercial and governmental world is not anxious to find out about us as individuals. Now that genetic science is reaching in to the most intimate secrets of our very make-up, there is very little left except the actual physical body that isn't being bought and sold. After all, when you've gotten all the money out of the bank, why worry about the building?

The Chair: I'm going to quote you on that, you can be sure.

Mr. Phillips: Feel free.

In a sense, when I try to focus on why this is coming to the front burner as a public issue, it's because the public is coming to understand - a little bit, at any rate - what is going on. They have no idea now who has information about them, how it's being used and to whom it's being disclosed. They don't know where to turn if they think something has gone wrong. Altogether too often there is nowhere to turn. There's ample survey data to support that argument.

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Increasingly, people are using computers at work and at home. They surf the net, they bank by phone, they buy their groceries with plastic, and they're coming to understand, slowly, and perhaps in a fragmentary or elementary way, some of the privacy implications of these very convenient, powerful and pervasive technologies.

We've seen the enemy - it's us. Canadians want something done about this, and they see privacy protection as a priority issue for government. I think that is a matter of some interest to parliamentarians. Every survey we have seen on this issue says the public, by a very large majority, would like to see Parliament act.

Second, governments are scaling back, and in the search for leaner, meaner governments - I use that term very loosely, not advisedly - we see governments, perhaps properly, trying to squeeze every last inefficiency and every cheater out of the system. We see a growing integration or comparison of databases inside government and between governments. Cards with digitized fingerprints, multiple-use cards and the single identifier principle are being increasingly promoted. There potentially is involved in all of that a massive transfer of power to the controllers of all that technology.

Further in the interests of efficiency, governments are also looking for ways to share service delivery with other levels of government, with varying degrees of privacy protection, and with the private sector as well. Frequently in that exchange privacy itself becomes a fatal but very silent casualty. Just by way of example - this is not intended as a judgment on the proposal itself, merely one of its effects - the transfer of our traffic control system to private sector management means, at a minimum, the privacy rights now embedded in the law for some 6,000 federal employees will be altogether lost, and so will the privacy protection afforded by the Privacy Act to the millions of pieces of personal information generated by the air traffic control system, which, because they are in the custody of the Department of Transport, are protected by the Privacy Act.

I don't single out NAVCAN apart from any other government downsizing exercise, but it simply is one example, and perhaps one of the larger ones we're confronted with today. We have to think about these things.

Three, business now recognizes the power of their information holdings and their potential as a product line to be mined, manipulated and sold, often without individual knowledge or consent. Witness, if you would, the recent stories about pharmacies selling doctors' prescription records to drug companies, a practice the profession is very exercised about now. I don't know, but there's a possibility that the prescription record of somebody sitting around this table has now been sold off to some drug company.

Finally, in another sphere, we seem to be becoming increasingly fearful for our safety, particularly in large urban areas. The demand for more security in society is fueling the creep of surveillance technology into areas of our life we previously considered to be free of this kind of thing. There are cameras in offices, stores, on street corners, in factory washrooms - you name it. We also now have powerful biotechnologies, such as genetics. They have the power to heal, of course, but they also have the power to enslave. You have to ask yourself whether we're converting ploughshares into swords instead of the other way around.

So we are in some very troubling times in this context, but with very few exceptions we have as yet taken no legislative action to cope with the new climate. We continue, up to this date, to rely on: federal legislation, which applies to some but not all of the federal government's works and undertakings; laws that apply, in most but not all of the provinces, some controls on public sector collection and use of personal data; but with the single exception of the province of Quebec, no laws at all in the private sector except those few laws applying to credit reporting companies.

We do have a lot of voluntary privacy codes through the system, but they have no legal rights attached to them and no independent oversight.

I think one of the important exceptions to that generality, though, is the government's response to the recommendations of the Information Highway Advisory Council. This is the most encouraging development that's come along in my five and a half years as the privacy commissioner. In a statement issued by the Minister of Industry just a couple of weeks ago, they have promised to bring forward proposals for a legislative framework to introduce privacy law into the private sector.

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If the government does this right, if it's a bill that provides some genuine, independent oversight and some reasonable compliance and audit system to it, this will be the most important privacy development in the history of Canada. If it's done badly, it will be the most important privacy disaster in the history of Canada. So everything depends on how well this is done. All I can say at this stage of the game is that I think they're on the right track. I applaud the government for the initiative it has taken so far.

I do hope when they get to it they will not confine this legislation merely to the information highway. The issue of privacy is much broader than merely the traffic in information over electronic systems. It gets into all kinds of things, such as biomedical applications in the workplace and surveillance systems. There is almost no aspect of human life these days that does not have a privacy implication in which technology is involved.

We're at risk now of losing all of our sense of autonomy and in the process of sacrificing a fundamental human right. I wouldn't go so far as to say privacy no longer exists, but it's certainly breathing hard to stay alive.

Does our current policy framework adequately protect privacy? The answer is emphatically not. It's almost self-evident that it doesn't, because most of the privacy intrusions that have concerned this committee and that have been mentioned today and in previous sessions are entirely legal. In short, the framework is riddled with holes that make privacy altogether too subordinate to many other societal interests, particularly the pursuit of financial gain.

There is considerable debate in Canada - Mr. Black referred to some possible approaches - about the shape of a framework to protect privacy. We all have opinions on that. I would like to invite you to consider some things that I think must be done, as well as a national framework act. I would like to see a privacy impact analysis attached to every piece of legislation that comes before the House of Commons, similar to the statements that now accompany it with respect to the observance or relationship of the law to the Charter of Rights and Freedoms.

I would like to see some system for assessing the impact of technologies on society. This is right up the alley of this committee, really. The United States has had the Office of Technology Assessment for some time, and it has done enormously valuable work. Even if Congress and the administration haven't seen fit to act upon many of the problems they have identified, the office has shown the way in being able to see a lot of the problems technology does create for society.

Frankly, I would like to see more support from Parliament for studies such as those that are now carried out by my office on some of the global issues, such as surveillance technologies, for example.

We must do more in the field of public education - I think Mr. Friedman mentioned this - about privacy and its value in a democratic society. I would say a decent respect for privacy is a sine qua non of a democratic society. Without it, if we don't respect each other, we're not going to have a democratic society.

Finally, there is developing an ethical framework to deal with privacy issues, which is very much the work of this committee.

So armed with these tools, from legislation - starting with that - to some system to embody thoughtful analytical work to improved education and ethics, we at least have some chance to preserve a very fundamental human right.

Thank you.

The Chair: Thank you very much. I must say, you've all presented very thoughtful and thought-provoking points of view. I'm sure all members have things to ask.

[Translation]

Mr. Assadourian has asked Mr. Bernier if he can begin the questioning. Thank you,Mr. Bernier. Why can't you always be this amenable?

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[English]

Mr. Bernier (Mégantic - Compton - Stanstead): I can't be perfect.

[Translation]

The Chair: Yes, but you have other qualities.

[English]

Mr. Assadourian (Don Valley North): Thank you very much, Madam Chair. Thank you very much, Mr. Bernier.

I have to leave early for another committee meeting, but first I want to take this opportunity to thank you for coming.

Secondly, Mr. Phillips, this is to do with the provincial government. I don't know if you read the news yesterday - I'm sure you read the news - that the OMA, the Ontario Medical Association, passed a resolution to open up the medical files of some doctors to the public in some restricted way. If the doctor thinks you are dangerous to society or what have you, he or she has the right to pass that information on to the police or to neighbourhood committees.

Do you think this is a step in the right direction? How far would you go towards opening up medical records of individuals? For example, some people say alcoholism is genetic. How would you balance it and how would you control it?

Mr. Phillips: I would not go very far with any proposal to open people's personal records without a very carefully constructed process being put in place first.

Yes, I have read that story. It is similar to proposals dealing with people who already have criminal records. There is a great deal of public agitation these days to put information about people with a criminal history into the public domain. There may be a good argument for doing that in many cases, but it should not be an ad hoc process in which the decision is left to some individual.

The nearest parallel I can think of is in Manitoba, where they have a community notification committee composed of some eminent Manitoba citizens with some expertise in this field. Where the police feel there is a case to be made for making public information about an individual who is considered a threat to society, that case is put before a community notification committee, it's considered, and the decision is made according to a set of standards.

I think that offers more promise than putting the responsibility for those things on individual physicians. There may be cases where it would be advisable to do that, but I think we have to have a proper process in place.

The Chair: Would anyone else at the table care to add to that?

Mr. Assadourian, do you have another question?

Mr. Assadourian: No, thank you.

The Chair: Merci beaucoup.

Mr. Bernier.

[Translation]

Mr. Bernier: First of all, I would like to thank each and everyone of you for agreeing to come and discuss this matter with us. We have heard some very interesting comments regarding the need for regulations. Most of you would like the government to step in and regulate the field of new technologies, in particular access to these new technologies.

My first question relates to what Dr. Baird, Ms. Rioux and the others said about the need for ensuring access to new technologies, particularly in the medical field and in the case of technologies geared to persons with disabilities or to the elderly.

I wouldn't want to draw you into a constitutional debate, but since we are here to hear your views on the decisions that the federal government will be called upon to make - you can see where I am going with my question - , when you talk about access to new technologies in the health field which will necessarily result in costs, as Dr. Baird pointed out, which will have to be assumed by governments, we are coming close to a field of provincial jurisdiction. How is the federal government justified in intervening? How far can it go? I would be interested in hearing your comments on this.

I also have a question relating to Mr. Phillips' remarks.

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I must have missed something, but this is the first that I have heard a reference to privacy protection, particularly as it applies to the field of surveillance. This is a very interesting point and I would like to hear more about it. In listening to you talk about surveillance cameras that monitor our every move, a thought came to mind. In my home town of Sherbrooke, cameras were set up in the downtown area to monitor the activities of young people; as soon as municipal leaders realized that they were being caught on film in certain areas with persons whose identify they would have preferred remain a secret, the cameras disappeared.

I would be interested in hearing your views on the ramifications of this phenomenon. How can we regulate this area?

[English]

Dr. Baird: Maybe I'll address the first part of the question and leave Marcia to talk more about the second.

You're really asking about the tension between the fact that access involves cost and health care delivery is a provincial responsibility, whereas in fact the implications for how new reproductive and genetic technologies are used are ones that affect all Canadians, and many of the decisions are social and ethical decisions. It seems to me that if how technology is permitted to be used differs very much from province to province, the impact and the implications can't be contained within provincial borders.

For example, if you allow 63-year-old women in Ontario to buy young eggs, you're going to get reproductive tourism: the women who can afford it are going to come to Ontario and buy it. If you're going to permit paid surrogacy in Manitoba, say, but not in Saskatchewan, you can't contain the attitudes engendered neatly within provincial boundaries.

So there are some implications of using reproductive technologies that aren't neat health issues. They are social and ethical issues that spill over in many ways. So I think it's really essential for the well-being of Canadians that we have a relatively common harmonized approach. If every province just simply does its own thing and there are major differences, I don't see how you can contain the harmful ill effects to the borders within one province. It will inevitably affect other Canadians.

Marcia, I'll let you go with the second half.

Ms Rioux: Thank you.

I think there are probably two kinds of costs we talk about when we talk about the development of biotechnology.

One is the access cost, to which you're referring, and I think in that case it's necessary to ensure that there is not a differential impact, and, in particular, a differential negative impact on people with disabilities. Particularly in the case of some of the new reproductive technologies, women with disabilities have been refused access to those technologies.

It's particularly important to ensure that we don't have a differential impact based on race, ethnicity, gender or disability in looking at those. It seems to me that's a matter of ethics and rights. That's not a matter of provincial jurisdiction. At the present time, one could certainly ensure that the principles of the Canada Health Act specifically covered those, and that fiscal transfers in fact were - as they are now - based on the adherence to those five principles. One could ensure that this was in fact covered under those five principles.

I think the second important implication is the second area of cost that I was referring to, the cost that people often suggest will be reduced, because if we eliminate certain kinds of genetic structure we will then eliminate the costs attached to those particular disabilities that result from the genetic condition. I think this has some particularly serious implications, and, again, I think there should be regulation to ensure that doesn't happen.

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I recently received a copy of a paper from a gentleman in Madison, Wisconsin, who has a very large genetic centre. In the paper, he argued that the cost of keeping a child with Duchenne muscular dystrophy and bringing that child up in this society was far too high and that in fact the cost of genetic research was much less than that. Therefore, that was his basis for carrying on with genetic research, and in fact for the dedication of funds to that particular research.

I think that's a morally abhorrent kind of argument. Again, I'm not sure it's a jurisdictional question. I think it's a question of ethics, values, standards and principles that one would want to maintain at a national level, at a provincial level, and indeed at an international level.

Dr. Baird: Very briefly, I just wanted to add another couple of comments related to costs.

We recommended from the commission that actually the reproductive technologies should be used in an evidence-based way. That is, they should not be available unless there is evidence that they work and are safe. Currently in Canada, for example, IVF is used about half of the time for women who are in categories where there is -

The Chair: Excuse me, Dr. Baird. There are some people who don't know what IVF is.

Dr. Baird: It's in vitro fertilization.

In vitro fertilization is used about half of the time for women who are in categories where there is evidence that it works, in that it gives them a better chance of having a live-born child. About half of the time it's being used for women where there is no good evidence that it is efficacious. Those are costs that are often in the private clinic sector for the actual procedure, but all the other extra costs, like the increase in miscarriages, the increase in ectopic pregnancies, the multiple births and all of the consequences that come from this, are actually and inevitably picked up in the public system. So currently the profits are being privatized and the costs are being socialized.

I think if we could get to a situation where the technologies are being used in a controlled, accountable, evidence-based way, the cost to our health care system in the long run would be very substantially less. I think those things that are not evidence-based and that are not shown to work should only be provided in research trials if they look promising and should be moved over to the public system only if the evidence shows that they work and are safe. That in fact will allow us to save a great deal of money in the health care system over time.

[Translation]

The Chair: Was your supplemental regarding surveillance directed to Dr. Baird or to Professor Black?

Mr. Bernier: It was directed to Mr. Phillips.

[English]

Mr. Phillips: Monsieur Bernier, the first thing I want to do is to amend a little bit your understanding of my position on technology. I'm not here to suggest regulating technology. I am here to discuss how information is transmitted and used through those technologies. It's an important distinction. With respect to surveillance, the issue really is, Monsieur Bernier, how much personal liberty you're prepared to exchange on behalf of the assumed benefits of that kind of security.

I suppose if we put cameras and spotlights in every apartment building, in every backyard, in every front yard and on every street in Canada, it would certainly cut down on crime. I'm pretty sure we'd get that result, but I don't think any of us would sleep very much at night. We wouldn't enjoy that kind of surveillance. There's a matter of degree here.

I do not disagree with the proposition that in certain cases there might be an argument for surveillance cameras on public streets. I'm not entirely convinced, though, because that's not only taking pictures intended to deter people from committing illegal acts, it is taking pictures of a lot of people going about their daily business who are being photographed usually not knowing they're being photographed. And they might not want to be photographed. They might be engaging in some private activity they don't want anyone else to know about.

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Who is controlling those pictures? What assurances have been given with respect to the prevention of any secondary or tertiary use of those pictures?

I think you have to take a very hard look at what you're giving up as well as what you're getting. Too often we reach for these allegedly simple technological solutions to much more complex social problems: let's stick a camera in there and take a picture of everybody.

Let me tell you about something. A fellow in Vancouver went to a bank machine one day a few months ago. He stuck his card in, made his transaction and went home. He was sitting in front of his television set that night when he saw his picture flashed on the television screen with a notice: ``Wanted by the police for fraud at an automated teller machine''. He hadn't done any such thing. In fact, it was an error by the bank. They'd failed to adjust the time recording feature in the camera for the switch from standard to daylight time. There had been a crime committed at that machine that day, but it wasn't him. In the meantime, he'd been identified to a couple of million of his fellow citizens as a wanted person. So there are hazards involved here.

We could spend a lot of time on the subject of surveillance. I think we have to take a very close look at this. You can have perfect security and perfect control if you give up total freedom - all of it.

The Chair: I can remember our first visit to Russia, where we talked about Boris listening in - Big Brother. It really makes you quite leery about the whole thing.

The next question goes to Dr. Keith Martin.

Mr. Martin (Esquimalt - Juan de Fuca): Merci, madame la présidente, and thank you to the panel for taking time out to lend your expertise to us.

A comment to Mr. Friedman and a question to Dr. Baird.

Mr. Friedman, I couldn't agree with you more on hate propaganda on the Internet. It's extremely worrisome, and it has no place whatsoever in our society. I think my colleagues from the Liberal government will tell you about the superb private member's bill by Dr. Pagtakhan dealing with this issue. Any support we can get from your organization and others would be greatly appreciated, I'm sure.

In breeding a more tolerant, understanding and more compassionate society, do you not think that could be done most effectively in early childhood education? The effects we could have on the individual very early on would have very long-term effects when they go on to become adolescents and then adults.

In other words, we could somewhat change the course curriculum, starting at early childhood education, to deal with not only the ABCs but also compassion, self-respect, respect for others and tolerance and understanding, bringing these concepts into early childhood education and reinforcing that throughout the process. I think that's an impact organizations can have by influencing the federal government and their provincial counterparts.

Mr. Friedman: We have worked with provincial and local governments in the area of public education on tolerance, mutual understanding, promoting respect and so on. One of the things we think we have to add into that picture is how to use the Internet, what you find on it and what it means - putting all things into a context. That all has to be part of what we work on in the schools.

In our work, for instance, we have discovered that many of the high school students are aware of the hate sites. As someone made the point, in fact the hate sites are actually very small in number. The discussion groups on which you find hate messages are actually not that many out of a total of 15,000 or 16,000. Unfortunately, however, they still manage to draw attention. The information still manages to circulate.

That's why it becomes important to deal with it in the way you discussed, not only in early childhood education but at all levels. So certainly it's something we're constantly pushing for.

Mr. Martin: Thank you.

Dr. Baird, it appears to me that one of the primary objections you have in trying to regulate new reproductive technologies is the aspect that there's inequality in access, primarily based on finances, to those technologies by various people. In other words, the rich might be able to get IVF but the poor may not.

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If that is the case, are you then suggesting that we make safe, effective reproductive technologies essential health care in this country? Because if that's the case, we'll have to make it universal. How do you square that with the current economic situation we face today, where Canadians across this country, as you as a practising physician know, are not receiving essential health care services when they need it? People on waiting lists for open-heart surgery are dying. In British Columbia, elderly people in severe pain...60% of them waiting more than seven months to get a hip replacement. Children are being shunted to adult wards from pediatric wards; there's no room because of the lack of finances.

How do you square that with our current financial situation?

Dr. Baird: I think it's very important to use our finite collective resources for the health care system wisely and well. I think the universal health care system, publicly supported, has been one of the major benefits of Canadian life. We certainly heard very strongly and clearly from Canadians that they want it preserved.

I think we can only preserve it if in fact we use our resources wisely - that is, on the basis of evidence. It's been estimated by many different studies that somewhere between 30% and 80% of all the treatments and technologies used in health care are either not helpful or harmful or they have not been evaluated. This is a shocking statistic when you hear it for the first time; nevertheless, it's so. There's a great deal of room to evaluate, on the basis of evidence, what we do in the health care system.

We heard, when we talked to many Canadians, that having family is the most important thing in the lives of most people. It's a very central thing. So to dismiss infertility as being trivial, as something you should just get over - it's no big deal - is not caring and not understanding. So much of our social organization is predicated on being related to each other in families, having another generation follow. We heard very clearly from Canadians that if there are safe and effective technologies for helping people achieve that goal, they should be provided by a caring society.

It seems to me, if we look at the evidence properly, there are going to be certain technologies aimed towards that goal that should be provided in a publicly supported system. It will not be that everyone is uniformly and equally appropriate for the use of the technology. For example, IVF is not going to help anyone unless they have bilaterally blocked tubes.

So it doesn't mean everybody has access to everything. There is something called medical judgment, appropriate diagnosis, and using appropriate treatment for the appropriate condition.

For example, you can do CAT scans on heads, but you don't do it if someone has no symptoms. You don't do it if somebody has one headache. You don't do it if somebody comes in with one blow on the head and no symptoms. You use that technology for people where it is clearly indicated.

I hope that helps address some of the issues.

Mr. Martin: I completely understand it, as a physician myself. The thing is, we have a time lag here. The reality in which we live today, as you know, is the fact that we don't have enough bucks to pay for what we already want. Are we going to add something new to this? It's that simple - for now. Later on, when the evidence comes down - and it isn't going to happen tomorrow, nor six months from now - when is this going to come in given our current situation?

Dr. Baird: I think it's currently coming in. Quite a number of organizations across the country in different provinces, as well as national organizations, are specifically looking at evidence. I think there already are quite a number of opportunities to decrease costs by dropping coverage of certain things or by using resources more appropriately. The Ottawa ankle rules, for example, come to mind. A whole range of others are starting to come out. So it's beginning.

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Mr. Friedman: I'd like to make one comment here, which seems to me to apply generally to many of the areas we're dealing with - the conundrum of the federal government having a national standard in many areas, and there being a need for a national standard in areas such as hate propaganda or access to technology or privacy, and yet being limited, perhaps, in the means with which it can do that from a constitutional perspective in terms of what they're actually responsible for, such as delivery of health or other kinds of services. We speak of public education and early childhood education, but is it the federal government that does that? It's usually done at the provincial and local levels.

So we're trying to promote a national standard that is delivered locally. That seems to me to be something that affects everything we've talked about.

Prof. Black: Just to follow up on that, I agree fully that this is an important issue that affects all these areas. I think it's a real challenge of the new technology. We can't even stop at provincial borders. The border with other countries raises similar problems. I think we're putting our heads in the sand if we don't look at it.

We probably need to look at a variety of mechanisms. In some areas explicit, uniform standards will work. In some areas the federal government can take a leadership role in the areas over which it does have jurisdiction. For example, it has jurisdiction over some aspects of insurance and not others. If it sets appropriate guidelines in areas it does have jurisdiction over, that can serve a leadership role. In some areas the federal government can serve a leadership role in promoting uniform laws in Canada so that it's voluntary.

I think we have to look at a variety of mechanisms, but if we say we have these jurisdictions and therefore we can't do anything about it, then I think we'll let the new technologies get out of hand.

Mr. Phillips: I'd like to pursue the points made by Mr. Black with respect to jurisdictional issues. In the field of privacy law, the Government of Canada has jurisdiction in several of the main elements or pillars of the Canadian economy - banking, telecommunications and transportation - that among them comprise some of the most massive collectors and users of personal data.

Second, there are some opinions around - good ones - that under the trade clauses of the Constitution the government has ample authority to operate in other fields as well, particularly with respect to electronic data transmission.

So I second Mr. Black's observation that we certainly ought not to consider jurisdictional questions as any kind of an impediment that should deter us from moving in this field.

The Chair: Thank you.

Mr. Scott, I think it's certainly your turn.

Mr. Scott (Fredericton - York - Sunbury): Thank you very much, Madam Chair.

I also want to thank the various experts for giving us their time. I find it fascinating. I hardly missed a second except for a momentary lapse, when I was distracted, trying to think of what my pharmacist might be doing with my drug records right now.

Some hon. members: Oh, oh!

Mr. Scott: It's remarkable what happens to you when you become a politician and your terms of reference on everything change.

There's another point I found sort of interesting. It follows from what Mr. Phillips said. It has to do with the example of how pervasive things might become in terms of our attempts to probably seek some other objective and then trade it off against privacy. The example used was that of camera and lights and so on in every corner and every nook and cranny of the country. The interesting observation I would make has to do with the fact that this is not a particularly high-tech example. Consequently, I'll bet you that in some areas of technology right now there's something analogous to that going on, except because it is high tech we don't know about it. If there was a camera and there was a light in every...we would know about it. It's an accessible technology. I'm personally thinking there's probably something like that happening that is less accessible.

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The other thing is, perhaps - and I'm sure Mr. Manley is watching - the bill that was referred to that might come forward as a result of the advisory group on the information highway and so on should come to this committee. The record should show...I'm not sure where it might come, but it should be dealt with as a human rights issue. I think that's one of the reasons the committee felt the need to get out in front of this issue.

I have three questions I'd like you to answer, but I'm not sure at this point to whom they're directed. I'd like you to answer them in terms of urgency, because I think to some extent much of what's being said everybody agrees on. We need to put some measurements on it so we can compare it to something else we might be doing tomorrow, if you like. For instance, one of the statements was that Canadians want us to do something on the question of privacy. What is doable? What is deliverable?

Someone mentioned the American technological assessment exercise they've engaged in, that we're not engaged in, I guess. Is that doable? Is that something for us to pursue?

One question is specifically for Marcia - and others, I'm sure. If we see technology as both a great equalizer, particularly among Canadians with disabilities, and at the same time an instrument for widening the gap rather dramatically, not just as a physical thing but also in the context of some technologies that will take us down paths that may have consequences we probably don't even imagine in terms of Canadians with disabilities, I'm asking - unfairly, I suspect - is it getting worse or is it getting better? Are you optimistic or are you pessimistic? Is it something to be optimistic about or is it something to fear?

Finally, on the question of propagation of hatred, Mr. McVay, who's been referred to before and who appeared before, had a slightly different view of the role of government on this issue. I'm sure he didn't share Mr. Martin's view of the bill that many of us are quite supportive of, in the context of the fact that I think he argued - and it's not for me to say, I guess - that perhaps the better thing to do would be to have the government support proactive efforts on the side of those who would want to dispel all of the stuff that's out there rather than trying to use, probably ineffectively, our powers to stop the flow of the negative. I think that's a fair expression of his opinion.

Having asked my three questions, I can then stop -

The Chair: You're entitled even to come back with another one.

Mr. Phillips: The first question, I think, was what is doable; what do Canadians want?

What the surveys tell us is that Canadians want the same kind of protection for their personal information as is now available in most of the industrial countries of the world, with the exception of the United States and Canada, and that is, laws that will not allow for the collection of personal information without knowledge and consent and similar restraints on its subsequent usage.

In essence, what Canadians want is the same protection for all of their personal information as they now enjoy in their relationship with the Government of Canada. This is not a difficult thing to do. It requires only the will to do it. Such laws have been in place in Britain, France, Germany and other European Community members for some time. They're now in place in New Zealand. Australia is about to do the same.

There's another point I'd like to make to you. There is a commercial consideration here of some importance. The European Parliament has now passed and made law, and it's coming into force very shortly, a standard European directive on data transfers from European community states to non-community states that will require members of the community not to transfer data to those states that, in their opinion, do not have adequate data protection. This could constitute a fairly serious obstacle to free commerce across the Atlantic. We have already had one or two interesting examples of this, if I may take the time to tell the committee.

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A practical example is the German railway case. The German railway system, which of course is the principal method of urban transportation in Germany, decided to implement a modern fee collection process that involved giving their frequent users a swipe card, which they would just swipe as they got on the train. This generates hundreds of millions of pieces of information annually. They did not find a data processor in Germany who they felt was adequate to process this information, so they contracted with an American bank with a large data processing subsidiary to do the work for them.

When this came to the attention of the German privacy commissioner, he intervened and said they could not do that because the jurisdiction in which the data processing centre was located did not have adequate privacy guarantees for all of this highly personal geo-positioning data. As a consequence, there has been a very long negotiation now between the German authorities and the people in the United States who are involved in an effort to work out a suitable contractual system to cover that transaction.

We could find ourselves in a similar difficulty in this country, given the present state of our law. I have talked to a number of European commissioners on this point, asking them whether they feel Canada is up to snuff. The answer uniformly was, with the single exception of the province of Quebec, absolutely not.

So we have good, practical reasons for moving on this field, as well as the much more important basis issue of protecting a fundamental human right.

The Chair: I'd like to ask a hitch-hiked question before the next part of your question is answered, Andy.

You refer to the privatization of the air controllers. Was there any move on the part of the government to check with you as to whether or not there was some privilege to protect the private information we had on those employees prior to their being transferred, and was there any obligation to transfer that information from the public sector, where it was protected, to the private sector?

Mr. Phillips: I certainly think it should have been a moral consideration.

The Chair: Was it brought to their attention?

Mr. Phillips: Yes, it was.

The Chair: It was not carried through.

Mr. Phillips: No, it was not.

The Chair: Thank you very much.

Mr. Phillips: That's not quite a complete answer, Mrs. Finestone. I was informed that in the opinion of the people with whom I had raised this question I had intervened too late in the process. I wasn't entirely happy with that answer. I thought it was never too late, and I did appear before the House of Commons transport committee on the issue.

Secondly, there is a view in some places in the government that, really, the right answer to this is to bring in comprehensive legislation that in due time would produce the same kind of protection for employees in the private sector as now exists for employees in the Government of Canada. That is an answer that does deserve some respect.

My own feeling about the subject is, fine, that's great, and let's do that. But we have a problem in front of us right now, and there are several more like that going on. I didn't feel that it would have imposed any particular hardship on the company involved.

When the post office became a for-profit corporation it was obliged to respect the Privacy Act, and it functions quite well.

Interestingly enough, the bill involving the air transport issue does contain a provision requiring them to live by the principles of the Official Languages Act. So if one statute applying to federal institutions is transferable to the private sector, I can see no real reason why it couldn't be done easily with the issue of privacy as well. But in fairness, you might want to ask the people concerned about this as well.

The Chair: Thank you.

Go ahead, Andy.

Mr. Scott: There are a few floating out there.

Dr. Baird: As a point of information or clarification for myself, I had understood that what pharmacists were considering selling was doctors' prescription patterns, how often they prescribe certain categories of drugs. I don't think there was any thought of selling identified information on individual patients. So it wasn't a matter of opening up individual records. Is that correct?

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Mr. Phillips: That's one explanation I've heard, yes.

The Chair: I really don't know. I haven't read the article.

Ms Rioux: It's a hard question you ask me. I think when I first started looking in this area, when I first started to do some investigation and some studying in this area and I first went to the UNESCO bioethics committee, I was much more optimistic than I am now. I think increasing one's knowledge in the field of the research and its application in biomedical technology can only depress you if you have any interest at all in the rights of people with disabilities.

There are a number of reasons why I say that. In the universal declaration I referred to - and Canada has a member sitting on the UNESCO bioethics committee - in fact on the legal commission that is putting forward the draft declaration, they have made freedom of research take precedence over human rights in terms of disability. I think this is a problem. This is a real issue and this is an area in which I would certainly feel less than optimistic.

They don't in any way recognize the importance and benefit of biodiversity. In fact, the underlying implication of the draft declaration - not of all their work, but certainly of their draft declaration - and of much of the work in the field of gene research and its application, starts with an assumption that prevention is a good, and the prevention people are talking about is not the prevention of people who don't have disabilities and it's not based on gender and it's not based on race; it really is based on having gene structures that lead to disability. From that perspective, again, I'd be very pessimistic.

The access to technology is a really important issue. However, when we talk, as Dr. Baird does, about access to in vitro fertilization, we ought to have equal amounts of resources going to access to the environmental and social conditions that result in people being unable to bear children or being sterile, and in particular the different economic situations of those people and the conditions under which people are living. So it's not an absolute access issue in that sense, at least not for in vitro fertilization.

One has to be careful in those areas that if we're going to have access, it ought to be complete access, not a matter of making decisions about who might or might not benefit from this, because many women with disabilities have been told they won't benefit from it. That's a serious crisis for people with disabilities, who, it's assumed, ought not to have children in any case.

The concept of prevention that underlies much gene research and its application leads to an over-abundance of funding for biomedical research, particularly gene research. That's a real issue at a time of fiscal cutbacks and fiscal crisis of the kind we are in. As you well know - this committee would know as much as any group of people in Canada - the funds that are now being cut back for disability services, for enhancing disability rights, for ensuring people who have the supports they need to live as integrated citizens in this society, are being severely cut back. At the same time we are not seeing equal kinds of cutbacks in gene research. In fact, what we're seeing is increasing numbers of promises about how we'll be able to be rid of the people who cost us a lot of money or we'll be able to predict ten to twenty years in advance if particular genes will leave people unproductive citizens.

So while I'm optimistic about the way in which technology can be useful in enhancing people's ability to be included in society and ways in which they can use that technology, for example, for speaking capacity, for hearing capacity, for reading capacity, for any number of other technological assistance devices...that's critically important, and it certainly does de-isolate some people who have traditionally been isolated. But to ensure that is actually of benefit to people with disabilities, it's necessary to ensure access alternatives are actually built into the funding for the development of any of that technology, and I don't think that's taking place right now. Technology, even the beneficial technology we're seeing in computer technology, computer access, and computer information, is actually somewhat limited in the accessibility for people with disabilities and their being able to use it.

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The Chair: Russell.

Mr. MacLellan (Cape Breton - The Sydneys): About what Dr. Baird has said about pharmacies and information, my information, and what I've been told as well, is that the information goes to the drug companies to determine how well their products are selling and what people choose and so on. But I'm not convinced that's the only outlet. Nor do I really believe, in this area, people are being given all the information. There is really no way of knowing, frankly, whether any information would be going to the insurance companies, for instance, on health problems people have, because we really don't know. We're not really forcing people to divulge the information.

To you, Mr. Phillips - and once again I congratulate you on the work you're doing, and also on a lot of the things you're trying to do, because they certainly need to be done - I know you're getting a lot of requests and a lot of comments concerning privacy, particularly in these areas. My feeling is that it's much more of a concern than the Canadian public realizes. Frankly, I don't think the people know how serious it is. I don't think information is being made known to them. In most cases it's being intentionally kept away from them so they won't know. I find that a concern. It's being done at all levels. There's almost an industry of black market information that is circulating in this country and really, as far as I'm concerned, offending and violating the moral rights of Canadians.

I just wanted to get your opinion on that, and perhaps that of others as well.

Mr. Phillips: First, I'm grateful to you, Mr. MacLellan, and to Dr. Baird, for an important clarification on this pharmaceutical record issue. We have no evidence individual people's prescription lists have been used, merely patterns. But that's not the end of the issue by any means, as you say. For example, all prescription records in one province are on a common network, and there's concern there that it's being used for unrelated purposes.

I agree with you that vast amounts of the traffic in personal data are going on behind veils that until now have been, by and large, impenetrable. We get enough incidental evidence, through calls and complaints to our office, to suggest all kinds of practices are going on that the public doesn't really know much about.

The answer to that, of course, is uniform laws that require people to perform to a common standard. I have no doubt if we had a good privacy law in this country, one that covered all the commercial activity the Government of Canada could cover, corporations and businesses would find it not inconvenient to comply. And they would comply. They're law-abiding. But of course they will take advantage of whatever opportunities are there. That is what they are in business for.

I have never myself felt there was anything particularly malign about any of these practices. People are in business to be in business and make businesses flourish, and they will use the system in ways that will help them. If they can avoid having to comply with standards they will do so. That's all there is to it.

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It's interesting that more and more people in the private sector are now seeing virtue in a higher standard of performance. The Canadian Direct Marketing Association, which is one of the largest collectors and users of personal data, has now become an ardent advocate of government action in this field. For one thing, they introduced a privacy code of their own a couple of years ago, a code their responsible members are trying to live with, and they find it difficult to live with it because it puts them on a very uneven field with less scrupulous competitors.

I know most of my provincial counterparts are waiting for the Government of Canada to take the lead. I cannot believe if the Government of Canada took a leadership role -

The Chair: Excuse me. Mr. Phillips, if contract law is under provincial jurisdiction, why would they have to wait for the federal government or the national government to take action? The Province of Quebec took action. What would prevent the Province of Ontario or Alberta or anybody else from protecting its citizens from the kind of invasion of privacy that is taking place?

Mr. Phillips: Nothing at all.

The Chair: You just answered Mr. MacLellan by saying they're waiting for federal law, which I think is needed. I'm curious why they could not move on their own initiative.

Mr. Phillips: I'm not talking about provincial governments, I'm talking about provincial privacy commissioners, Ms Finestone.

The Chair: Excuse me. Thank you for the clarification.

Mr. Phillips: Yes, there's a difference. Some of them are pressing their governments, with varying degrees of enthusiasm. I'm very enthusiastic myself.

The Chair: Russell, did you have another question to ask?

Mr. MacLellan: I know there's a shortage of time, but I wanted to talk to Dr. Baird about self-regulation of IVF and other areas in the medical field and how successful that has been. How long can we expect it to hold?

Also, along the same line, to Ms Rioux, about biodiversity, which is a concern I have...where we stand there, the dangers we face, and any timeframes with which we may be faced before we have not just a potential problem but an actual problem.

The Chair: Before you answer, I know Dr. Martin had one small question. Then we'll have the answers from the panel. You'll realize why we have so many problems ahead of us in trying to decide which direction we're going in.

Dr. Martin.

Mr. Martin: To Ms Rioux, there's no such thing as completely equal access to all that society has to offer. I wondered if you thought it was a right to have equal access to reproductive technologies that were effective...and the really thorny issue of whether, if certain people with disabilities are, say, unable to take care of themselves, they have a right to have children. Under those circumstances society would have to have a significant input in maintaining those children.

The Chair: If I'm right, you have about a minute each to do a wrap-up. I guess we'll have to have you all back when we try to decide where we're going with all this.

Mr. Phillips.

Mr. Phillips: I think I've said my piece, Madam Chairman, thank you very much. We desperately need better privacy law in this country. I know the government is working on it. I cheer them on. I hope they come up with a good product. I'd be happy to come back here and talk to you about the details of that particular subject any time you like.

The Chair: Mr. Black.

Prof. Black: I would just like to say that our Constitution says that everything has equal protection and benefit of the law

[Technical Difficulty - Editor] ...role of ongoing monitoring with regard...

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If they could perform an ongoing role in monitoring the human rights aspects of these issues that also affect other committees, that would be a very useful role.

Mr. Friedman: This is also in answer to your question. Basically, what we see as the priorities are that we've come to a very similar substantive position as Mr. McVay has, but we've come to it from the point of view of practicality, not ideology; namely, the difficulty of actually enforcing laws on the Internet. So we think the priority should also be public education, promotion of awareness of what is hate propaganda, what is its root, as a contribution to the promotion of tolerance and mutual understanding among all Canadians.

But we think that promoting awareness of the Internet is perhaps necessary sort of upside down. Younger people tend to know what the Internet is. We're focusing on what hate propaganda and mutual respect are. Then with older people we also have to deal with what is the Internet, how it functions, and so on. So there's a need for both.

We still think there's a need for systematizing, making concrete, what Canadian laws represent in terms of our values and promoting those values in our society and internationally as a basis for dealing with hatred on the Internet.

Ms Rioux: A couple of rather substantive questions were addressed to me, so I won't really be able to answer those.

In terms of biodiversity, I don't think we yet know the consequences of the gene research that's taking place. That's one of the great cautions that many people are starting to talk about now. There is no doubt that if we listen to the people working on the human genome project they tell us that very shortly we should be able to eliminate certain kinds of gene patterns that are presently in existence. Unfortunately, what they're talking about is prevention through elimination, which in fact has many ethical considerations.

So I'm not sure of what our timeframe is. We're certainly being promised vast changes in the next 20 years, and I think it's a very critical question. I don't think we have any idea of what the consequences of the elimination of particular genes in the human make-up would be.

There is a huge screening and elimination program going on now. Women are regularly having screening tests when they become pregnant, and in most cases there's a fair amount of pressure for women actually to abort fetuses that have some indication of deleterious gene structure. So we already have that going on. I can't give you timeframes on that.

If we have health care that's a right of access to people, it should be a right of access to all people independent of disability.

In terms of how we determine who is unable to take care of themselves and consequently who is unable to take care of children, we have to be exceedingly careful about that. The external view of who can take care of a child is not always completely clear. We are certainly aware of the amount of child abuse that takes place in this country. It's not indicated in any way that that's greater among people with disabilities than among people without disabilities. At the moment when we decide we can make those kinds of decisions, we ought to be doing a fair amount of screening through all classes and all people in society. So I'm not sure what that question means.

Certainly the Supreme Court of Canada, in the Eve decision, has maintained that no court would ever be able to decide that an individual with an intellectual disability who was incapable of consenting could be sterilized without their consent, because there would be no way in which we could have any idea of whether that would be in that person's best interest, or indeed in society's best interest. That's probably our best legal precedent in that area.

Mr. Sutherland: Of the several things you talked about, the issue of content control on the Internet is one I would like to speak to. Do not attempt to pass a bill that attempts to regulate the content on the Internet. It will fail. It will be a laughing-stock, as the Exxon bill is in the United States.

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Your best protection on content is through education. As Mr. Friedman has said, change the culture.

I draw a parallel to the culture that was changed with respect to drinking and driving. It took probably 25 years to change the culture in this country. It's no longer acceptable. It doesn't really matter about the regulations. It didn't matter about the law before and it doesn't matter about the law now. It's now socially unacceptable. It has to become socially unacceptable to do the things that people shouldn't do.

The Chair: Thank you.

Last but not least, Dr. Baird, and I'd like to ask you to address, if you can, DNA data banks. Or would that be Mr. Phillips?

Dr. Baird: I just don't have time, but I want to make two points.

Regarding my first point, the question was asked, is medical self-regulation sufficient? No, it isn't, for two main reasons: one, it excludes perspectives other than a medical perspective on what are social questions, so that's not appropriate in a democracy; and two, voluntary self-regulation has been tried. We've had regulations about sperm and donor insemination since 1981. If you look across the country at what is going on, they are not adhered to.

My second point is, we did an awful lot of focusing in terms of the privacy legislation on all the dangers. I think we need to make some mention of the benefits, in that people expect government to have policies to protect their safety, to discontinue dangerous drugs or procedures. To know those things you must do research. So the privacy protections are needed, but they should not be so stringent that in fact appropriately protected research could not be carried out on outcomes so that we can develop appropriate safety and other policies.

The Chair: We still have another couple of minutes.

I did hear something about research: we shouldn't be too selective, or we shouldn't be too restrictive - we need some selectivity.

Dr. Baird: It's important with data on individuals that their privacy is protected, but at the same time, with appropriate protections in place, research should be possible so that in fact we can develop the information that will allow us to develop appropriate policies. Citizens expect policies to be in place to stop dangerous procedures, to protect peoples' health, and you can't develop those policies in the absence of information.

The Chair: I think, panellists, you'll understand that we are caught on the horns of a very serious dilemma. We will probably be in touch with you. To the public who has watched this, if they wish to be in touch with us, let us have some idea about what directions in which they'd like to see us go.

Perhaps we will have the benefit and the pleasure of correspondence or contact with you in the course of the next few months.

I thank you very much and hope to hear from you in the fall.

The meeting is adjourned.

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