EVIDENCE

[Recorded by Electronic Apparatus]

Tuesday, March 11, 1997

.1112

[English]

The Chair: Good morning, everyone. It's a pleasure to be here with you. I'm Sheila Finestone, chairman of the Standing Committee on Human Rights and the Status of Persons with Disabilities.

Today is a very big day here in Calgary, and I really appreciate the time you've taken on a big voting day. We've been watching this with a great deal of interest.

We've just had a very interesting meeting in Vancouver, with some very exciting and interesting interventions, and we look forward to the same participation and input from the diverse groups that you represent and the general population.

This is the third of our consultations. The first was in Ottawa, the second was in Vancouver, today we're with you, tomorrow Toronto, then Fredericton and Montreal on Friday.

We are examining the state, if I could put it that way, of the right to privacy in today's high-tech world.

Our committee has decided that given all we've heard from our round tables, which we held in September, October and November, and all we've read, which has been a great deal in the last little while, about the new information technologies and practices, we would like to know what are the implications for our personal lives, our privacy and human rights.

We've adopted a modified format for this standing committee of the House. This is not the normal format. We will be having a formal opening, as we are now witnessing, following which I will call a recess. We will then form small round tables and then reconvene for the town hall session.

When you look at the new invasive and evolving forms of technology, you can't help but really ask yourself, who's watching me, who knows what about me, and how much do they really need to know? We're really looking at where is the balance between the competing social and economic interests, such as crime prevention, fraud, health care, economic interest of business and our right to protect our individual privacy. Is there a need for an ethical framework and an obligation to ensure informed consent in the use of all these new technologies?

I think that this study is particularly timely given all the newspaper headlines we've been reading in the last six days. I'll just bring to your attention the fact that it has been right across the country, which has been interesting from our perspective, such as in The Gazette of Montreal.

.1115

It's even to the point of being able to trace your family tree back 9,000 years from the DNA they've tested. So don't think you can hide. You can even find your family tree. I think the Cheddar man has now found, I don't know how many generations later, a great, great, great, great, great, great grandson who is a teacher and was quite surprised to find out that he had these links.

Yesterday in The Vancouver Sun we were most amused to see a cartoon - I don't think they recognized the fact, or maybe they did, that we were coming - that showed photo radar and what's happening now. It's a very cute cartoon outlining the fact that they are in the shadow of the video cameras that are placed in all the fast-food lanes, the neighbourhood Safeway shopping stores and the hot dog stands. The photo radar at the Molson Indy added revenue as speeders were caught by special high-speed film, and they were promoting six wallet-size and three eight-by-ten glossies with each ticket issued. At the end the photo radar revenues were to be split among the civic government, the provincial government, and the guys whose toes were run over by the photo radar van.

[Translation]

According to Montreal's La Presse, the black market...

I'll stop here.

Let's come back to the black market. The right to privacy is one of the cornerstones of democracy. Yet, we hear that personal information on taxpayers is being sold on the black market by civil servants. It is normal that we'd be worried.

[English]

Essentially, the commission of access to information has found that information of a personal nature, such as medical, fiscal, and from Hydro Quebec, is being sold under the table and on the black market for $25 to $120 apiece. I think that's of serious concern in light of the fact that they're also looking at the issuing of citizen identity cards.

Following Dolly, the sheep, we now have the first human clone. We were told about this by a Belgian doctor. The child is four years old. Then the next day you get this headline in a different place telling you that this is a false story, that it wasn't really a clone but just a split egg and they had twins. Then you find some of the serious concerns expressed in The Gazette, such as a vision of the future, that many people fear that having cloned a sheep, we're about to gain the keys to immortality. But the failures of science suggest otherwise.

You brought to our attention yesterday that B.C. Tel and a company called Phamis, which is foreign owned, are working together to install large clinical information systems in a Vancouver hospital. Although it may well be in place, there's no mention of a protocol to protect the privacy of individuals as they collate all medical information from doctors and nurses, such as the nature of the interventions or the medications being given in hospitals, in order to make the system far more efficient and effective and to save $20 million through the implementation of the program.

This leads us to be concerned about just what's going on and at what point one can really expect that our personal privacy is not being affected.

The right to privacy does not stem from any one source. It's drawn from international and constitutional law, federal and provincial legislation, judge-made law, professional codes of ethics and guidelines, and the result is very often referred to in Canada as a patchwork of privacy protection.

At the international level - and this is going to have particular impact on Canada and the United States - several very important human rights documents contain guarantees to the right to privacy: from an historical perspective, what I call the Magna Carta of humankind - that is, the Universal Declaration of Human Rights, about which, by the way, we should all be a little bit proud, as it was John Humphrey, who lived in my riding, as it happened, and who passed away last year, who was the co-author with Eleanor Roosevelt; and the International Covenant on Civil and Political Rights of 1966, to which Canada is also a signatory.

.1120

There's no comprehensive privacy protection currently in Canada. Quebec is the only place in North America where there is a comprehensive regulation of private sector personal data practices.

In Europe, for example, the fair information principle of the European Union of the OECD countries applies to all persons and all personal information, whatever the nature of the medium, whatever the form in which it is accessible, collected, held, used and distributed by other persons.

It's important to note, however, just to flag this for you, that the federal Department of Justice, along with the Department of Industry, is in the process of drawing up a white paper. Certainly if those of you who would like to be on that consultation undertaking would leave your name with us, we would see to it that you receive that white paper, and perhaps you would like to look at it and make sure it includes the kinds of personal privacy protection you would like. It does include the Canadian Standards Association code of ethical practice.

In Europe, everyone has the right to respect for his or her private and family life, home and correspondence. There is no such expressed right in Canada. However, in sections 7 and 8 of the Canadian Charter of Rights, which apply to search and seizure, the right to life, liberty, and security of person has been interpreted through the courts to apply to privacy. The exception, of course, is in Quebec, where it is already in law.

I would just add that the concept of privacy, I think you would all agree, is the most comprehensive of all human rights held around the world, a broad and ambitious right, a universal concept, but it's not considered an inalienable right. I think you would agree that privacy is a core human value that goes to the very heart of preserving the human dignity and our autonomy. Most of us think that the right to privacy is something that is of paramount importance in our own personal lives.

[Translation]

Some experts define it as the right to one's own personal space, to communicate in private, not to be monitored and for the integrity of our body to be respected.

For ordinary citizens, it is a matter of power, the power each of us has over personal information relating to them. It's also the right to remain anonymous.

[English]

So the question becomes what is privacy worth in this high-tech society? There's no doubt that emerging technologies offer valuable advantages, efficiencies, and conveniences to all of us, but do the benefits offered by this new technology come with a privacy price tag? Is this price too high? How far is far enough, and is this trade-off inevitable? Where and how do we draw the line?

I would suggest that privacy is a precious resource, because once lost, whether intentionally or inadvertently, it can never be recaptured.

[Translation]

As members of the Standing Committee on Human Rights and the Status of Persons with Disabilities, we often use the human rights approach to measure the positive and negative impacts of new technologies on our right to privacy.

[English]

Canadians have never approved of peeping Toms and unauthorized wiretapping, and our Criminal Code reflects this. Does the same disapproval extend, for example, to hidden video cameras in the workplace, or to DNA data banks, or to citizen identity cards?

In order to exchange ideas with Canadians on those issues, the committee is holding this series of broad-based town hall meetings that, as I pointed out, started in Ottawa. We are televising this series in order to ensure that a larger proportion of the population can watch, and start to think and perhaps chat with their friends and neighbours about this issue.

It can be found on the web site, and those of you who are watching can tune into that web site right now and read the case studies we have presented to you and you've all had access to, and perhaps they will be able to follow the next session of the meeting, in which there will be reports on what you think and where our experts see some of the problems and some of the issues.

.1125

So we are going to look at three basic types. There are so many areas of intrusion in all the things we have heard. We finally were able to isolate three rather common undertakings that are of concern - by the way, although those studies are fictitious, they are based in reality - video monitoring, genetic testing, and smart cards. We hope to use these case studies to raise public awareness about the issues, the risks, and the benefits of advancing technologies, and to initiate this open and frank debate about the promise and the peril to our privacy as a human right in this era of modern evolving technology.

In conclusion, we do not expect to resolve all the issues raised by these scenarios definitively. We do hope with the input of all of you and others across this country we'll be able to come back with some concrete recommendations to the government for action in these areas. To this end we will hear your ideas, your concerns, and your proposals. We'll table a report at some time this spring.

I want to thank you very much for agreeing to participate on this particular day.

We have with us Valerie Steeves. She is our hearings coordinator. She is also a professor at the University of Ottawa Human Rights Centre and is leading their technology project.

Before I pass the floor to Valerie, however, I would ask the committee members present to introduce themselves. I'll start over here.

Mr. Andy Scott (Fredericton - York - Sunbury, Lib.): My name is Andy Scott. I'm the vice-chair of the committee and the member of Parliament for Fredericton in New Brunswick.

Mr. John Godfrey (Don Valley West, Lib.): My name is John Godfrey. I'm a member of the committee and from the riding of Don Valley West in Toronto.

Ms Jean Augustine (Etobicoke - Lakeshore, Lib.): Jean Augustine. I'm the member of Parliament for Etobicoke - Lakeshore, which is part of the metropolitan Toronto area.

Mr. Sarkis Assadourian (Don Valley North, Lib.): My name is Sarkis Assadourian. I'm the member of Parliament from Don Valley North. Don Valley North is in the city of North York, a city with heart.

[Translation]

Mr. Maurice Bernier (Mégantic - Compton - Stanstead, BQ): My name is Maurice Bernier and I'm the vice-chair of the committee and the member of Parliament for Mégantic - Compton - Stanstead in the Eastern Townships, in the province of Quebec.

[English]

Mrs. Sharon Hayes (Port Moody - Coquitlam, Ref.): My name is Sharon Hayes. I'm a member of the committee. I'm from the Port Moody - Coquitlam riding in beautiful British Columbia.

The Chair: Where we had a very wonderful round table yesterday. Thanks for your hospitality.

I must tell you it is Mr. Bernier's birthday today. We all sang ``Happy Birthday'' to him.

The table officer of this committee is Wayne Cole, who is the clerk of the committee. Our research director from the Library of Parliament is Nancy Holmes. Jean-Yves Durocher is our media consultant. I don't know where he is at the moment - busy doing media work, I guess.

Now I will now pass the responsibility over to you, Valerie.

Ms Valerie Steeves (Committee Facilitator): Thank you, Mrs. Finestone.

We provided you with these case studies precisely to provide some personal or social context for our discussions. As you know, these case studies or stories try to illustrate both the benefits and the detriments of these new technologies. We hope through discussing the impact of these new technologies on the lives of the people in the stories we'll begin to understand two things: first what privacy means to Canadians, and second, how we as a society can best seek to balance the benefits of these new technologies, which attract us to them with their underlying social values, including our commitment to privacy.

You, the participants here today, actually represent a broad cross-section of Canadian society. Among you there are representatives of advocacy groups, general business associations, disability organizations, educators, government workers, health workers, human rights groups, multicultural organizations, labour unions, police officers, lawyers, media, telecommunication companies, and cable companies.

To explore the diverse perspectives you bring to the table this morning in the best way we are going to begin the consultation process by dividing into small groups, to give us an opportunity to discuss the case studies in depth. Each of these small group discussions will be facilitated by an expert in the field of privacy rights. Each of these groups will also include at least two members of the committee who will be participating in the discussion with you.

.1130

Once we've had the opportunity to explore the case studies in these small groups we'll be reconvening the general meeting and holding a town hall discussion. To start the discussion, we'll be asking one of the committee members to summarize the major current concerns that are brought out by your discussions in your small groups. We'll give the experts an opportunity to add any comments or concerns of their own and then we'll open the discussion to the floor.

We look forward to an open and free-flowing exchange of views throughout the morning among you, the participants, and the experts and the committee members about the meaning of privacy in this new technological age.

It is my privilege to introduce the four people who will be facilitating the small groups.

Frank Work is the director and general counsel in the office of the information and privacy commissioner of Alberta. Frank received his master of environmental design from the University of Calgary. In the 1970s he worked as an urban planner for both Edmonton and Calgary before he went to law school. After he graduated from law school he worked for the Attorney General of Bermuda for several years as well as taking overseas assignments for the United Nations environmental program and the World Bank. Since 1990 Frank has been parliamentary counsel to the Legislative Assembly of Alberta and is also general counsel to the ethics commissioner.

John Ennis has twenty years' experience in the federal and Alberta public services. During that time he's worked on policy formulation, information systems development, program design, executive search, and dispute resolution. For the three years leading up to the coming into force of Alberta's access and privacy legislation, John served as the PAO's first freedom of information and privacy commissioner. When it started up in August 1995, John joined the office of the information and privacy commissioner as one of the two initial portfolio officers. His first year at IPC was occupied with social service appeals and privacy complaints, and his workload now predominantly contains access requests relating to environmental issues.

John's professional interests revolve around privacy assurance investigation work and computer system integrity. And I must say that he brought a lot of enthusiasm to the organization of this particular consultation, and for that I'd like to thank him.

Mr. Joe Forsyth is a director in freedom of information and protection of privacy in records management for Alberta Community Development. Prior to taking on that responsibility in 1995 he spent two years as assistant deputy minister in the individual rights and citizenship division in the same department. During that time his responsibilities covered the areas of human rights, women's policy, seniors' policy and multiculturalism. Joe has been chair of Alberta's interdepartmental committee on human rights and has represented Alberta at federal and provincial meetings of officials on human rights. He's recently completed a complete privacy assurance investigation and privacy audit of the Alberta seniors' benefit program. In addition, he's just completed a two-year term as chair of the provincial committee for the community access program, which is bringing Internet access to rural Alberta communities.

Charles Hitchfeld is president of Adsum Consulting Limited. Based in Edmonton, Adsum specializes in information management, access and privacy issues. Charles also has more than twenty years' experience in the federal and Alberta public services. He's held senior positions in access to information and privacy, financial services, records management and information technology. From 1994 to 1996 he developed and implemented a comprehensive access and privacy program in the Department of Economic Development and Tourism for the Government of Alberta. In addition, since 1994 he's also developed over forty briefing and training sessions on access and privacy.

We've divided you into groups in a somewhat random way and made as much effort as we could to provide as much diversity of opinion in each group as possible.

.1135

You'll notice that your name-tags are colour-coded. If you have a blue name-tag you'll be working with Frank Work and John Ennis. If you have a yellow name-tag you'll be working with Joe Forsyth. And if you have a green name-tag you'll be working with Charles Hitchfeld.

When we do break in a few moments to get into our small groups for the discussion, your facilitator will ask you which of the three case studies you'd like to start with. Our time together during these consultations is extremely short, so I'd like to remind you that the case studies are really there to provide you with a starting point for your discussions. Please feel free to spend as much or as little time as you want on each of the case studies. Please feel free to draw linkages between the three and to voice your concerns about how these new technologies impact your personal sense of privacy.

We will be reconvening for the town hall discussion shortly after 11 a.m. The final part of this initial meeting will be indicated by Mrs. Finestone suspending it. As soon as she does, because her time is so short, please get into small groups as quickly as possible so we can maximize the amount of time we have to participate in this discussion. Thank you.

The Chair: Thank you very much. The meeting is suspended. Please take your places at the relevant tables.

.1137

.1311

The Chair: We're reconvening this session in Calgary. This is the third round table.

Ms Steeves: To start off, we'll be asking the MPs to give a brief summary of the discussions in the small groups, and I'll ask Andy Scott to start that process.

Mr. Andy Scott: Thank you very much.

Forgive me for being traumatized by this microphone, but the last time I used it, I was doing a social security review and it was rather...

Essentially, I think we had a good starting place in our group. When we asked the group to decide on one of the three scenarios, we had one vote for each of the three. I think that set the tone.

Basically, we started out with video surveillance. I think we identified that it was really a matter of personal choice, the issue of a person's ownership of that information, a person's space, and so on. I guess we'll hear that articulated again and again as ``informed consent''.

There was a huge discussion around definition in the context of ``public place'' and ``private place''. We didn't really come to much of a resolution of the issue, although we did bring it forward. I think it's safe to say that at least one member of our group found Disneyland creepy on the grounds that Mickey knows what's going on, or something like that.

In any case, there was the issue of safety. I think it's fair to say there was some acceptance of a balance, that this is not an absolute issue at all. As a part of the public safety argument, there was also the question of whether or not there was in fact an actual deterrence around some of this. We discussed that in particular.

I think we began to recognize that we aren't at all aware - and I'm personally not aware - about some things. We talked about whether or not it's informed consent when in reality we don't know what is actually going on. I think that challenges the notion of informed consent right from the beginning. Also, who has access to the information? That again speaks to the issue of informed consent.

You'll notice at this point that I was reminded that there was an election in Alberta today and that I shifted from red to blue. I just didn't want to be accused of bias, and it has in fact put me back on the red.

In any case, we then moved for a moment to deal with what I guess was a question of linkage. While we were talking about these issues of informed consent and ownership of the information and so on, we recognized that this is where these scenarios all begin to come together. That was the point there.

.1315

We then tried to get beyond the question of a public versus a private place, on the grounds that this was an individual rights issue. It was not so much an issue of where, but one of those fundamental individual rights. We again spoke of public safety, of the question of what the balance is, and how you measure that balance. Again, the question was whether or not the onus is on the video operator to advise us that we are in fact being taped and so on. I was advised by the media person present that I'm always taped, but I had never been told that.

I think one of the interesting issues that we've come to a conclusion on here is the question of informed consent, especially when it's put together with the question of the safety associated with deterrence. Knowing that you're being videotaped presents an interesting issue. For instance, we talked about automated tellers and the fact that everybody is videotaped when they go to the bank teller. I spend an enormous amount of time at those machines, and up to this moment I didn't know that. Maybe that makes me uninformed, but I think it's important when you speak of informed consent. What is ``informed''?

We talked about the safety preoccupations involved in finding a balance. We talked a little bit about how we would regulate those people who would in fact be in a position to use information in a way that we felt was inappropriate.

We then spoke about the issue around the public's right to know, and we spoke of the journalists' spin on this issue. By virtue of what they use the information for, journalists are not restricted from doing things the police are restricted from doing. I think that informs us a little bit as to whether our values should be guided by the collection of that information or by the use of that information, because in that case we've already made a decision, either right or wrong. I guess that's the point I was trying to make.

Also, in terms of what it does to our society, there was an interesting observation about the unintended consequences of the gathering of this information. We spoke of the communities in which, once they are cleaned up, crime all of a sudden goes down. Then there are the communities into which you can take a car, and if you leave it there at the side of the road and people start taking parts off it, all of a sudden the crime rate goes up. So the question then becomes one centred around what is said about or done to the society when you put in all these cameras, when you do these kinds of things.

We spoke a little bit about how difficult or easy it would be to regulate the various persons who would be in a position to misuse information, or arguably misuse information.

We then looked at what would happen if we did establish such a regime. What are the insides and outsides of what would happen, and how do we enforce this? How would the courts award damages? How would we basically act on those values if we could in fact come to some consensus on what those values are? So the point was made that in the final analysis this is all a matter of acting in good faith, and not acting through regulation. That was a debatable point and the group discussed it at length, but I don't think we reached any consensus. Again, it appeared that we were essentially moving in this direction: as long as we are consistently using the information for what it is understood to be gathered, then it's less offensive.

We spoke of whether or not there was any less likelihood of abuse in the private sector or the public sector. Once again, I don't think we reached a consensus on that; however, it certainly was a subject of discussion.

Ultimately, in the final analysis, we did centre on the issue of who has control of the information, who controls the use of it, what our rights are, what our ownership is. We then somehow accepted that there is an appropriate use for the information, although we recognized that we probably don't agree on what ``appropriate'' is. There is probably some balance to be raised, though.

Choice and informed consent kept coming back. I think we made the point that we have to explore the notion of informed consent with great caution. Even in this exercise that we're engaged in today as members of Parliament at a broad, very collective level, if the public has a fundamental right here that has to do with informed consent, and if I as a member of Parliament think the public is not aware of some of the things happening with the information around them - and I think I can draw that conclusion pretty safely - then as a member of Parliament responsible for public policy do I not have some obligation to inform? In other words, if I'm asking for consent and if that is a value we have as a community, then I think we have some... At some level this exercise in itself is adopting that value and pushing that envelope.

.1320

This then begs the question, where is paramountcy here, with individuals or society? We discussed various models. I guess that's pretty much the same as we were concluding. It was more a matter of trying to find out where that informed consent comes from.

Another point that's quite interesting was made in the group. Some of the information we get really annoyed about - I didn't use that word in our group - has been guiding decisions made around other kinds of Canadians or persons of other circumstances for a long, long time. If someone has a visible disability, insurance companies are making decisions about that person all the time. Now, I have a disability, but I'm able to keep that a secret, because nobody's allowed to have that information. I'm mad now, because they get access to that information, and now they're going to treat me just as they treat my sister, who has a visible disability. That annoys me. I don't know what that says about us, but I think it's something that was captured in our group, and it's very, very important.

Then the question became that it's not the gathering of the information but what it's used for, and then the profits and privatization and people to whom that is offensive - which repeats the question of whether the issue is gathering or use of the information. Again, to some extent the argument made in the group was that some of these issues transcend privacy issues - that's the point I was making earlier - that it isn't just a question of whether they have access to that information about me but is it not discrimination if you deny someone insurance because of a visible disability but we don't let them deny me insurance because of an invisible disability? What does that say?

Market-driven - make the choice - the fact that many of these things are happening now... If someone is unconscious, doctors can take a blood sample for purposes of driving while impaired. It has never happened to me. Do we have any rights?

Finally the various agencies we would call on: I guess at the end we were trying to figure out what to do about this. Essentially the question that was posed with ten minutes to go is now we've captured all this problem, what do we do about it. I think we see the need to regulate the people who would be in the strongest position to misuse information. We need to regulate and empower those agencies whose job it is to protect us. I think to some extent we really have to focus on informed consent.

I would say that's where the group got.

I would also like to thank all the participants and the facilitator. It was most exciting to be a part of it. I hope I've done justice to a very stimulating discussion.

Ms Steeves: Thank you, Mr. Scott.

Mrs. Hayes, would you like to provide us with a summary?

Mrs. Sharon Hayes: I want to thank the participants in our group again. We had an interesting discussion.

We zeroed in on two main areas, video surveillance and DNA testing. I have quite a few notes, and I'm going to try to synthesize them into something much briefer.

On video surveillance, we started by saying the case study itself was somewhat biased, in that it gave a scenario of an individual literally breaking laws and then being caught and then being called to account. It's interesting how the balance there between the good of society, the protection of society, and the invasion of others' rights and how that played out came through as we started out and then later on in some of our other discussions.

.1325

If I were to bring out a few major themes, the first would be that the legitimacy of any technology, be it video or DNA, must be demonstrated to be needed; i.e., there's a reverse onus on the introduction of a technology. It should not be the first thing that is accepted and then people fight against it. It needs to be shown to be to the benefit of society in order to be valid.

Then the potential use and the scope and even the retention of any information must be defined, along with the consequences. If the retention goes forward in time those things must be defined as part of the definition of the legitimacy of that technology.

We made the point that the invasion of a technology or the invasion of privacy is greater as it is shared and it is extended. An example was the telemarketing industry. Again, if it goes beyond that, if someone's personal information goes further and further, the invasion is greater and greater.

The other thing is that the privacy issue does depend on societal values. Basically it's a trade-off between individual privacy and safety in society or efficiency of operation or whatever. These things really go back to the ethics and the values of society.

The onus of advice... Actually, Andy did mention the taping of surveillance, that people need to be advised of that. We also talked about banking machines and the knowledge of that invasion of privacy. It goes back to the theme of informed consent. With video surveillance that's perhaps a sign on a public machine to say you're being taped if you're using that. Again, it's that whole notion of informed consent. It leaves the individual a choice. They can perhaps choose to go to a machine that isn't using a tape, if that's an invasion of their privacy. So there's an individual level of choice and understanding and decision.

The second thing we went to was genetic testing. We had a very good expert in this area - again, within my comprehension of the issue - say that fire walls are necessary as we gain information in the genetic area; that the collection of information is legitimate for research and certain purposes - these are needed - but there are huge implications to the person as it defines their very personhood, in their DNA; but also the familial connections are greater and greater. So not only do we invade the personal privacy of one but we potentially invade the personal privacy of many individuals.

Education is important throughout our discussion as we work towards that.

Genetic testing, case studies... I'll leave that and I'll carry on with what I've gone to.

The next page has to do with informed consent. Informed consent is part of the video as well as the DNA testing. Again, the use should be clear in non-legalese... We went right back to the DNA implications with this, because again, with most of these things, even though the technologies are different the issues are the same. Informed consent gives the individual power if they know what it is they're consenting to, and also perhaps builds that trust.

.1330

We talked about the insurance industry for a while. Of course, when we get to DNA, the level of knowledge that's available to insurance or to risk takers is that much greater. We also talked about how it increases our scope of the definition of disabilities. I guess we're all disabled in some respects when compared to others.

This came to a fascinating conversation about a balance of power. This is the power of an industry versus the power of an individual. But, it's also the balance of knowledge. It makes me think of a book I read once. If power is knowledge, if an individual has the knowledge, then of course the power would be in their hands versus those of the industry. I think both of those things are major issues when we come to medical insurance and the coverage thereof.

So what we do in that case, whether it's ethical or legal, is something I'll just try to summarize in the last page.

What should the government do? We went around the room. We again underlined the importance of informed consent that is truly informed. Again, we underlined this familial DNA connection, the implications of that and the importance of that. There's the fact that individuals should not be able to profit from their information, but then again, we come down to the point here such that the state or the private sector should not be able to take advantage of information either.

We need for that a moral and ethical framework; laws are not enough. There should be codes of ethics. Education came up again and again as public awareness of the issues and early education. So we're not necessarily even talking about adults, but about a full society that is aware of the implications of what is happening.

We did express skepticism. We do need to broaden this discussion, take it out of a room such as this, take it into society and make people aware and involved throughout the society. We need teeth in what's going to happen.

One of the questions that needs to be looked at by government is how we should address the abuse of the invasion of privacy. How can we do this, if we can at all, at whatever level?

An interesting comment was made right at the end. You can't read it because it's at the very bottom of this.

There are three tiers of levels of control. The first is probably the government level. That will be rules and laws dealing with such things as medical and genetic information. These are the very specific things that need to be addressed there.

A second tier will be the code of ethics within the business and user community. What general values and ethics would they follow?

I thought the third level was interesting. It did come out at different points in the conversation, but it was sort of synthesized at the very end. The individuals themselves, with informed consent, with the information given to them, can make the decisions to either give up privacy by using one company or one technology. So part of it comes down to individuals knowing what the total picture is and making decisions. So they are partly responsible as well. Again, it comes back to public education.

Thank you.

Ms Steeves: Thanks very much, Mrs. Hayes. Mr. Godfrey.

Mr. John Godfrey: I would say that we devoted the bulk of our time to the whole issue of smart cards, with a small coda on genetics, DNA testing and so on.

If there was an overall theme, I suppose it was the impacts that technological shifts have on societal shifts or value changes.

.1335

There was one sentence that leapt out from the case study about Marie. She was the woman who had to get an unemployment insurance card in order to collect benefits. This is what we thought characterized this societal shift in response to technology: Marie felt uncomfortable at first, but gradually she got used to it.

That was a theme that kept coming back to our group. It's the whole notion of a slippery slope moving toward some kind of 1984 type of scenario, whether it was in New Oceania or wherever it was.

What were some of the characteristics of that shift that the group picked up? Somebody said it's really a problem of public trust. There's a diminishing sense of whether individuals in society are fundamentally trustworthy, and an increasing assumption that people are bad. This is coupled with the desire across society, whether it's in the field of health, public security, fraud or commerce, to reduce risk and to have a more convenient society with orderly individuals living within it.

In our Canadian society, as part of that shift, there's a kind of schizophrenia that was noted by the group. On the one hand, there's a desire to get the bad guys and to nail down crime and fraud. On the other hand, we scream bloody murder when it comes too close to us as individuals. That uneasy tension underlies this whole discussion.

That led to the next issue. This was also alluded to by the previous groups. Where is the problem? Is it at the level of the individual or of society? At what end do we fix it?

Is it simply a question of having a better-informed citizenry? They could be better educated at all stages of life and could then defend their individual rights against these technologies, whether these technologies are controlled by government or the private sector.

Or is it society's obligation to protect all individuals in it almost on the basis of consumer protection, weights and measures, if you like? There would be a burden on us as legislators to listen to you and pass regulation on your behalf that would give you a degree of comfort. This is what we do in so many other fields, whether it's guaranteeing the security of your deposits or whatever else. Where's the burden? That's something we're going to have to deal with as a committee.

The next theme has to do with the technological shift. There was a rather interesting observation that much of what we assumed to be private in the past was not protected by laws or codification, but by the inconvenience of digging out the information on us.

The example was given of title records, land records. These were always public, but such an effort was involved to get at them that, de facto, our privacy was protected. But now, with everything so easily accessible by computer, we are losing it. We never thought we had to protect it, but now we're struggling to keep up with protecting something that we always took for granted.

The balance is always between expediency, efficiency, cheapness, and convenience on the one hand, and privacy on the other hand. This is something whereby the slippery arguments always deal with these expedient, efficient, cheap, and convenient cases.

Like so many of the other groups, we were collectively of the view that informed consent was absolutely crucial. But we noted in the case we were studying, which was Marie, that there could not be true informed consent if someone had to take the card because she was on social assistance or unemployment benefits. There was no choice: if she wanted to get the money, she had to take the card. So that was not true informed consent. It was certainly not true consent.

Another theme that was linked to that was control, which is the other side of consent. For instance, who guarantees the security of cards? Who guarantees the security of samples taken during genetic testing? Who controls that information? I won't dwell on that, because that is a common theme to everything that was said.

Part of the shift we're talking about is increasing commercialization, particularly in the case we looked at of smart cards. There's the general issue of whether it's in the interest of business left unregulated to take our privacy concerns seriously, or whether it's more interesting and commercially valuable for them to know who we are and not protect our anonymity.

.1340

Should then commercial enterprises be forced to protect our anonymity, because otherwise they wouldn't? Does it require external regulation? Somebody in the group who had some knowledge of this said that virtually every company is guilty of selling their lists, because lists have value and lists have your name on them. People remember that lists were used for more unsavoury purposes during the Second World War.

The second-to-last theme, you'll be delighted to know, was the concern about the unintended use of information, the function creep, which was outlined, I simply want to emphasize it, because it was a shared concern with the groups.

Finally, when we got to the whole area of DNA testing, it was I think the consensus of the group that a special approach was needed. The information was so invasive of our privacy in ways that really had no parallel, in a sense, with the other two. As somebody said, the other two, which were closed-circuit television and smart cards, are about how you live your lives, but DNA is about the time of your death in a certain kind of way. It probably requires a special approach, a special understanding of both the law and the science involved in it.

Thank you very much.

Ms Steeves: We'll give our experts a chance to put in their two cents.

Perhaps we can ask the other MPs if they have some brief comments of their own to add. Do you have anything you'd like to add? No?

Perhaps then, Joe, we'll start with you.

Mr. Joseph Forsyth (Freedom of Information and Protection of Privacy Director, Alberta Community Development): Thanks very much.

I think one of the things that came through loud and clear to me - we're dealing with a group of relatively informed people around the table - is the extent of the lack of knowledge about what actually is held about us in different places. As Andy said, until we actually know what exists about us in the various data banks, both public and private, it's really tough to make any decisions personally on what we're going to do about it. So one of the things that may arise out of this is some kind of better knowledge or inventory of that.

I was intrigued by the amount of discussion on informed consent. It occurred to me, as I sat here listening to the members, that because you don't have a choice any more, is there a point at which society has de facto accepted that invasion of privacy?

If you can't find a bank machine that doesn't videotape you, you can't find a bank counter that doesn't videotape you, and you can't find any way of doing your monetary business without being videotaped, has society in essence said ``tough''? I don't know, but it seems to me that in some instances we're getting perilously close to that. If you can't walk through the shopping mall without being videotaped, do you really want to go shopping?

One of the other items I just wanted to briefly mention is this. In this increasing age of privatization or de-administration that's taking place in governments, I think government has an onus to make sure that the rules that would protect your privacy, were the business being done within the public sector, are moved out to the private sector as a part of that privatization.

If you're going to have private hospitals and clinics, if you're going to transfer responsibility, for example for immigration or education or training, from one level of government to the other, we should make sure that the same protections exist when that's transferred as if it was in the public interest.

I have a last comment, and then I'll close, because we don't have a lot of time.

It seems to me we're finding that as technology increases our access to information, if it can be used, it will be used. The fact that it exists presents an opportunity for somebody to use it. So it's really important that there be some kind of a rule, whether it's a regulation or a code, that says that if it's collected for X, it can only be used for X.

The slippery slope is so slippery and inviting. It's like wanting to slide down the banister when you were a child. That's because it's there and it's neat to do. When you get to the bottom, it actually hurts, but you had fun getting there.

Sometimes I think that's what we're on now. It's there and it's neat to do, but when we get to the bottom, it might hurt us.

Ms Steeves: Thank you very much.

Charles.

.1345

Mr. Charles Hitchfeld (President, Adsum Consulting): Thank you, Valerie. There are a couple of small points that sort of summarize my feelings on this, on what I've heard, and on what my own beliefs are.

First, we won't stop the technology. The technology is there and it's going to happen. It's really our job to try to forge the world around that technology so that the outcomes we get are positive and clearly outnumber the negative ones. There is an immense potential for positive outcomes. We don't even understand many of them, but I think they're there.

I think legislation with teeth is required, which will create the sort of environment in which the use of information has to be defined. If somebody wants to collect personal information, that's fine, but people have to understand why it's being collected and what use it's going to be put to.

I think there has to be greater disclosure and a greater understanding of consent and knowledge before consent is given. Informed consent really has to be informed consent; it has to be an ongoing process, not a process in which there is one signature at the bottom of a form and nine years later something happens based on that signature of consent.

Third, through legislation, we need to identify where ownership of personal information really resides. In the community we believe that personal information belongs to the individual, regardless of where it's resident, but I'm not sure that's explicitly stated and understood. If somebody wants to have a battle with a corporation that holds information it should be understood who owns that information. And maybe, if that information is no longer being used, there is an opportunity to take back that information, to have it expunged from a private sector record.

That summarizes my views.

Ms Steeves: Thank you very much.

Frank.

Mr. Frank Work (Director and General Counsel, Office of the Information and Privacy Commissioner of Alberta): Thank you, Valerie. First, just on a personal note, I just wanted to express my appreciation to the people I sat with for enlightening me on more than one thing.

I have three points to make, which are my personal points.

On any of these privacy and technology issues, I think the first point is that the need has to be shown clearly and concisely. I am very concerned about the fact that we tend to be driven by the technology and that we do it just because we can do it instead of saying ``Do we really need to do this? Do we really need the surveillance? Do we really need the networking and so on?'' It's an accepted course in almost any major environmental undertaking now that the assessment of the undertaking begins with a demonstration of the need. I think that principle has to be carried over into this area.

Second, the real difficulty with relying on laws or on any kind of formal regulation to protect privacy is something that's inherent in the nature of information: once something is known, it cannot be unknown. You can clean up records and you can pay damages and so on and so forth, but once the information is known, it can't be unknown. That inherent characteristic in what we're talking about has to be respected.

Third - and I'm indebted to some of the people at the table for this - you cannot possibly hire enough privacy police, privacy commissioners and privacy inspectors to protect everybody's privacy every day of the year. People have to take the primary role in that. They have to become a little suspicious, a little questioning and a little demanding. I guess that probably goes to the concepts of education and awareness.

Thank you.

Ms Steeves: Thank you.

John.

Mr. John Ennis (Portfolio Officer, Office of the Information and Privacy Commissioner of Alberta): Thank you, Valerie. I'll start by expressing my appreciation for the people that you brought together for this do today, Valerie. The discussion that went on at our table certainly reflected a wealth of views, and some very well considered views.

.1350

I will add a couple of observations. I attended the same table as Frank was at, so I'll try to ride on his coat-tails in terms of the views he's expressed.

In the discussion of smart cards there seems to be quite a distinct vision on the part of the private sector developers of smart card technology when compared with the government uses of that kind of technology. Exploring the vision the private sector has in a way that brings that vision into how government might use smart cards is probably an important exercise, because it seems the developers and the potential users are talking two very different languages on that issue. To go back to the theme Joe raised about how if it can be used it will be used, very likely the major user of smart card technology will be government. So I just observe the distinct visions that are in place right now and how that relationship should be explored.

The second is in the area of genetic testing and DNA information. The observations that came from our group... Our group had some people who are quite well versed in this subject, but even they were prepared to say the whole issue of how DNA is being handled and how genetic testing information is being handled should be explored now in terms of the safeguards that are in play and the practical arrangements that are now being used to safeguard information, to see what efficacy or what guarantees are in that kind of arrangement as things now stand, before we launch off into some new arrangement. But there was definitely a feeling that DNA information was a special kind of privacy issue.

Ms Steeves: Thank you.

We would now like to hear from you and open the discussion to the floor.

The Chair: While you're getting ready to speak, I would like to ask whether you feel your thoughts and your concerns were expressed through the reports that were given, so you've really made your points known in many cases. Please just nod yes or no. Thank you.

Mr. Brian Edy (Alberta Civil Liberties Association): Good morning, Madam Chair. I'm Brian Edy. I'm a director with the Canadian Civil Liberties Association and the Alberta Civil Liberties Association and president of the Freedom of Information and Privacy Association of Alberta.

We've been working for quite a while, lobbying for not only freedom of information but privacy. We do have an act in Alberta. We also have an advantage in the sense that Bill 204 is a piece of legislation that was placed before the legislature last spring. This would have broadened the base of privacy rights in Alberta. Because it was Liberal legislation that was being proposed nothing came of it, but there were some interesting comments in the debate, and I think a recognition in some senses. It borrows from the Quebec legislation - I had hoped to hear from Mr. Bernier - in the sense that Quebec truly is a distinct society because Quebec is the only province that has personal privacy protection which also protects people's privacy in the private sector. I think that is unique, and I certainly would like to hear from Mr. Bernier on that later on.

Just for your use, I was hoping to table Bill 204 with this committee, because it focuses on some of the problems which we have in Alberta and which other provinces may face, for example the privatization of health care. We're going to be having our own privacy legislation extended to health care over the next few years, but at this point there is no provision whereby private health care would also be included for scrutiny with respect to privacy rights. That's just one of the narrow issues that need to be focused on: the breadth of privacy.

The Chair: I'm curious. In the building of this set of directions, is encryption in there, and who is administering it? Is it administered by government? I think it was Frank or John who said privacy has to be maintained in a different way if you're doing personal information. Is it kept in an encrypted way? Is it kept with fire walls? Does it indicate any of that within the legislation?

.1355

Mr. Edy: This is legislation that is proposed by Gary Dickson, the MLA for Calgary - Buffalo. He certainly breaks down in a very critical way the purposes for which the legislation is going to be used, what opportunity there is for an individual to know what indeed that information is going to be used for. To correct the information, in many cases, as the federal privacy commissioner indicated, up to a quarter of all the information that's being put in the data has imperfections in it. It's not accurate. The inaccuracy can cause further problems. So this is addressed in this bill as well.

The Chair: And who has access?

Mr. Edy: Who has access - and the need to correct this sort of information, which is incorrect. But the purpose for which the information is being collected is very important. If you are going to give informed consent, it should be for a very specific and limited purpose and the information should not be kept over a certain period. That's also important, because information becomes stale very quickly and it gets you into inaccuracies. There's the issue of control, who has access to that, which is very important.

I won't go on, because a lot of other people here have interesting comments to make. But with your permission, I would like to table Bill 204 for you.

The Chair: Thank you. That would be very helpful to our committee.

[Translation]

Maurice Bernier, would you answer those observations?

Mr. Maurice Bernier: It would take a long time, Madam Chair.

I can say in short that concerns expressed by the private sector - since the good thing about the current Quebec legislation is that the private sector is subject to it - about the huge costs that would ensue from the implementation of the Act haven't materialized. Their business has continued to expand and, to the contrary, the act has been well accepted in all sectors of society.

The protection of privacy, even with our legislation in Quebec, is an issue that can never be settled. It matters to the private sector, of course, but to the public sector as well.

The last report of the Auditor General of the province of Quebec refers to some really frightening cases of intrusion into privacy. I'll only mention the example of a very famous artist whose name has been quoted repeatedly, Roch Voisine; his file has been scrutinized by some150 civil servants on approximately 500 or 600 occasions over the last two years, without him being advised in any way. You may wonder why all those people showed so much interest in reviewingMr. Voisine's tax return.

When you hear, at the hearings of a parliamentary commission on smart cards held in Quebec because the Quebec government intends to introduce citizen identity cards, that some civil servants are selling data on health, income or other things, you are justified to be very cautious and to hope that some rules will apply to the private sector, but also to the public sector. The fight will never be over.

[English]

The Chair: I wonder, Maurice, if you would perhaps answer the question. Is that commission on la vie privée really focused on business and collectables and saleables, or is it also ensuring that those things that define me as a human genome or whatever you want to call it are really protected? What was the focus, in your view?

[Translation]

Mr. Maurice Bernier: In effect, the legislation enables Quebec to regulate how the information is collected, held, circulated and sold, but it mainly provides us as individuals with an agency that we can turn to, that we can complain to and that can act upon a request for an investigation to be held.

.1400

I think it's the main benefit of such an act: ordinary citizens are able to request more information if they feel their rights are encroached upon. Otherwise, they must call upon the courts on an individual basis, with everything that flows from that.

[English]

The Chair: I think you would be interested to know that in our round-table discussions during the fall we did have -

[Translation]

Mr. Maurice Bernier: Paul-André Comeau.

[English]

The Chair: - the privacy commissioner, who spoke to us, as a matter of fact, from Brussels. He will be with us again in Montreal, so in following this and in reading Hansard you will be able to hear what he has to say as well as Maurice's very fine explanation.

Bon, merci.

Next person to the mike, please.

Mr. Colin Laughlan (Individual Presentation): Good morning, Madam Chairperson. My name is Colin Laughlan. I'm a journalist and a privacy advocate and wear both hats at the same time. I want to say thanks to the people in my group. They were very knowledgeable and I learned a great deal from them, so I want to say thank you for allowing me the opportunity to participate.

One of the things that came up that wasn't really addressed was the question of trying to inform the public about some of these highly technical issues that have a strong societal impact, but which, it was felt, most people aren't aware of. As a person who works in the media I'm aware of that all the time.

I want to suggest that by way of public information, one of the most important things this committee might do is make a concerted effort to educate news editors, publishers and news producers by going well beyond simply sending out news releases saying you're having a forum on privacy issues, because here's what will happen. If I receive that and I am sent on assignment, I will have to come over and do what's normally called ``balance of the story'', so I will receive a view from somebody proposing privacy legislation or human rights values embedded in the whole issue, and on the other side I will have to say, ``What's the dichotomy here?''

Normally the media make false dichotomies. They create a news story. It's not misleading, but it's not the whole truth. The problem is that for balance we have to find the other side, and on the other side there might be somebody who's proposing the benefits of a particular issue, so it then becomes a story that has very little impact on the public. It doesn't get at the real issue.

The positive thing I see coming out of a committee such as this one in these hearings is that what you're searching for here are not so much solutions but principles upon which to base those solutions, and those principles have to be communicated to the people who communicate to the public at large. They don't have time to learn them. That's not their job. But I know that they would be receptive if the time were taken to tell them what those principles are and to bring them to a point of view that is going to allow them to assess news as it arises in these areas.

There's a lot of sex appeal given to high-technology issues. Personally, I appreciate the need for many of these technologies, but I'm not on the side of thinking that the solutions society really needs are all found in the privacy-enhancing technologies and the various technological solutions to technological problems.

The bigger issue is one of societal change, with technology being the driving force behind it. That societal change is the transformation of the public and private sphere. It's going to make a radical and fundamental change in the way we live our lives in the future. I think the media has to be brought up to speed on how it is covered.

.1405

The Chair: Thank you for really shifting the paradigms. That's something we've been trying to do. With your observations, perhaps we will be able to attract the editorial board.

May I suggest to you that you have a colleague in Vancouver who brought a similar issue to our attention. Perhaps with the initiative that both of you have flagged, we'll be able to be more effective in the invitations that we have assiduously tried to put into place, but to which we have not had the kind of response we would have hoped to have had, especially since this really is a question of the individual and the state.

Yes, sir.

Mr. Peter Bridge (Director, Canadian College of Medical Geneticists): Good morning. I'm Peter Bridge. I'm the director of the Canadian College of Medical Geneticists, and I've also chaired its DNA testing committee for the last six years. I'm also the person who directs the lab that does all the DNA testing for the province of Alberta.

I'm obviously going to address my comments to the genetic testing case study. I want to go on record saying that this was an excellent story and discussion, but since it is being discussed across the country, I would also like to say that the subject Frank fell foul of what we would call a research study. It's not a medical study of the sort conducted by the Canadian College of Medical Geneticists across the country for well-identified genetic diseases. The physician doing the test would have violated Medical Research Council guidelines, local hospital and university ethics, board approval, and so forth, in doing that type of test and in entering it in Frank's medical record.

So although it was an excellent discussion topic and has led to very valuable points, I must go on record as saying that it hopefully would not occur in Canada as described, and that these problems are fictitious.

The Chair: Perhaps for the sake of the listening audience, as well as those of us who are not as well informed as you are, I wish you would describe this: If a research project involving the development of new biotechnology is undertaken in the public sector through the hospitals and research councils, versus having it occur in the private sector, where are the protocols? Who is responsible for the development of those protocols? Who reviews those protocols to ensure that the public's safety is a primary goal? How do we know and how are we ensured that the information is important to gather and is an enabler for the advancement of the health of the society or the well-being of the society? At the same time, how do we guarantee that anonymity is guarded to the extent that the individual wants it guarded?

There are very often familial implications in the research that's being done. There is the potential to find out who you are, but you don't know anything until you go to get that information. You then have to feel comfortable that there is some kind of risk management taking place in order that the unfortunate fallout that ruined this man's life doesn't happen.

Perhaps what you've just told us can give us a sense of comfort in the public sector or in the para-public sector, but is there no case in which there is not some need for enforcing legislation - either provincially, or both federally and provincially together - that makes very certain that private research and corporate research are also going to protect us?

Mr. Bridge: Absolutely, there is that need.

When it comes to the research studies, any of the granting agencies funding such studies almost uniformly follow Medical Research Council of Canada guidelines. Those guidelines require that the participants sign an informed consent, which means the researcher would be responsible for meeting with the person, for explaining fully the nature of the research and the potential benefits that would accrue to the person, and so forth. So this sort of backroom testing described in this scenario would certainly violate all of those principles.

Frank would have to understand exactly what the researcher was going to test for and whether or not there was any benefit of that research - and usually there is no immediate benefit to Frank. Because it's research, that information would be kept essentially in an anonymous sense, and it would certainly have no place whatsoever in Frank's medical record. If it did uncover something, the researcher should then say to Frank that something unusual has been found and he should go for genetic counselling and in a formal medical sense get into the system to have genetic testing for such-and-such.

.1410

But that would then come under a totally different system that is very carefully controlled, where the testing will be done by appropriately trained and qualified individuals in an accredited centre, which is very different from the research study.

The Chair: But that piece of information goes onto a medical request. The exact procedure you just laid out is supposedly in the protocol or in the framework of the research that was undertaken.

Yesterday, however, at one of our tables, a young woman indicated unequivocally that it was breached, not necessarily in a deliberate way, but it was the unintended result when the researcher spoke to the head of the program who then spoke to the party concerned, so the party for the first time found out they had a carrier-type disease or chromosome gene. The request for further diagnosis was then put onto a form that went into the medical laboratory and was given to the nurse, the intern, etc., and this unintended result took place. We were given that information yesterday, in Vancouver.

John, I think you wanted to elaborate on that.

I'm not trying to put you on the grill, I'm just saying that we have some... I'm glad you're saying that we shouldn't worry, but we are worried.

Mr. Bridge: There should be a break between the research study and then -

The Chair: There should be a fire wall between them.

Mr. Bridge: Yes, there should be a distinct break. Part of the problem comes when physicians are the ones doing the research, and they have care of patients, and somebody goes from being in a research study of that physician to suddenly becoming a patient of that physician. There is a difference. In most cases there is physical separation and there are two separate individuals doing the testing, and that is an important fire wall.

If I can also advise the committee, there is only one comprehensive textbook written on DNA testing and calculation of genetic risks. It happens to be written by myself, so it is Canadian. It's written as far as possible in non-technical English. But there are many comments in there about the dangers of DNA testing and the implications of dissemination of the information. I will be pleased to provide the committee with the title of that so it can go on the records.

The final comment I wanted to make was that medical records historically have been a record of what has happened to that person to date - the one person. The genetic testing is very different, because it is predictive potentially of the future, and it also has implications on multiple family members. So one person can come in and consent to testing upon themselves, but they also drag in their whole family in the process. That is one of the very thorny issues with which we've had a long-standing debate and still have not got satisfactory resolution.

I hope the committee will deliberate on methods to safeguard predictive information and also to consider the difference between information that is specific to just one person as opposed to finding out the information on that person that also modifies the risk of all of their family members.

The Chair: Would you stay at the mike for a moment, please, because I know that John Godfrey... Go ahead.

Ms Steeves: Just before we do give Mr. Godfrey a chance to get his two cents in, could you state the name of the book, because that would assist in our preparation of the report.

Mr. Bridge: Certainly. It's called The Calculation of Genetic Risks: Worked Examples in DNA Diagnostics. It was published in 1994 by the Johns Hopkins University Press.

Ms Steeves: Thank you very much.

Mr. Godfrey, you've been patient.

Mr. John Godfrey: As I understood it, you would have a pretty good sense of the number of Albertans or the number of people who would in this jurisdiction have been tested for DNA for one reason or another. Can you give us a rough idea, at this stage of the game, of a universe of however many the population may be, what percentage of that population for one reason or another has thus far been tested?

Mr. Bridge: In my laboratory tests, approximately 2,500 people per year.

Mr. Godfrey: Okay.

Mr. Bridge: The laboratory has been in existence for almost 15 years. The numbers were not that high, initially. I would say, cumulatively, maybe as many as 15,000 Albertans have been tested for specific genetic diseases, not research, but for muscular dystrophy or hemophilia or cystic fibrosis or Huntington's disease.

.1415

Mr. John Godfrey: Would there be another small number that have been tested for reasons of crime detection or prevention? That doesn't come under your bailiwick.

Mr. Bridge: No, we do nothing with forensics.

Mr. John Godfrey: Thank you.

Ms Steeves: Mr. Scott.

Mr. Andy Scott: Thank you very much.

I'd like to put a couple of questions. When you started to speak about the experience, you talked about the signature and the notion of informed consent. I'm struggling with this on two fronts. One, on the question of informed, given the huge space between the knowledge that you would have around this issue and the knowledge that I would have - and I would probably be more than averagely informed if only by virtue of this exercise - I'm not sure that I could ever really be informed sufficiently to offer consent. This is not to suggest there can be nothing, but there may have to be some safeguards to protect me against my own ignorance.

We mentioned it not necessarily on this issue but on others where consent is perhaps theoretical but maybe not so practical. Given the circumstances of many cases, such as the case in the scenario, where there's a certain unequalness in terms of power, if I'm wishing to get some medical treatment and someone asks me if I'm prepared to allow that information to be used for some other reasons, am I consenting or am I panicking?

So on both fronts is it at least arguable that there needs to be some protection? Is the informed consent real?

Mr. Bridge: I think it generally is informed consent, not informed coercion.

I'm talking strictly about research studies, for example, approved by the University of Calgary. If I wanted to ask you to enrol in a study to find out the frequency of different cystic fibrosis mutations in Alberta, I would have to take that project to the ethics review board, who are certainly not geneticists. They are a mix of different people. It would have to be presented to them in a format they can understand. They would review the consent form, which will say exactly what I want to do, that the participation is absolutely voluntary, that you may withdraw at any time without prejudice to medical care or for any reason whatsoever, that the information will be kept anonymous and so forth. So at the end of the day I can calculate that 0.01% of the population of Alberta have this particular mutation. There are no names attached to that, and I would never, ever know your health care number. In actual fact that's also true for the mainstream medical genetic testing. We don't operate off health care numbers. That's not known to me.

Ms Steeves: Mrs. Hayes, do you have a question?

Mrs. Sharon Hayes: Yes. Actually, I was fascinated by the 2,500 individuals. Do they typically come forward as part of research projects?

Mr. Bridge: No. This is diagnostic testing where they have a known condition in the family or some indication to come for genetic counselling, so this is referred through a genetic counselling program. I'm not talking about university research projects where I go and recruit people. They come to us.

Mrs. Sharon Hayes: So there are other populations that aren't included in that 2,500.

Mr. Bridge: Very much so, yes.

Mrs. Sharon Hayes: There are populations that come forward for research projects. Also, the forensic population would be collected somewhere else. So there is other DNA testing going on in other centres.

Mr. Bridge: Absolutely, yes.

Mrs. Sharon Hayes: Do you have any idea what numbers would be in those populations?

Mr. Bridge: I would guess it's a higher number. I don't know an exact number, but I would guess even a greater number of cases participating in some form of testing, but it may be a very limited ascertainment of mutation frequencies or something.

Mrs. Sharon Hayes: But what limitations are there on the ongoing use of that?

Mr. Bridge: The consent form generally specifies what happens to the sample. The way it should work is that they will be tested for the test prescribed on the consent form and then the specimen destroyed if it's a research study. If it's diagnostic testing, the specimens frequently are banked on a permanent basis, because if you have, let's say, a family with Huntington's disease that has been present for many generations, then it may be relevant to test preceding generations, for medical purposes, as the knowledge of the disease unfolds.

.1420

Mrs. Sharon Hayes: In our group we very briefly mentioned the fact that all newborns have perhaps the sample that is then carried with their records. In previous discussions we talked about DNA, any privacy being defined as a potentiality of what might happen to it, and what we do now may not be what is asked to be done in the future. As our population increasingly becomes open to a potential invasion of privacy through biological samples, do you feel we need legislation to control that now, as opposed to waiting until something happens in the future?

Mr. Bridge: Yes, absolutely. I think we should have the legislation before the problem. Those specimens definitely exist. For the benefit of everybody, these are dry blood spots collected from all newborn babies. It is used for screening for a condition called phenylketonuria, and it's a yes or no answer. If it comes back positive further testing is done, because if they actually do have that condition and it's left untreated it will lead to severe mental retardation. But it is treatable by diet, so the reason for doing this screening on all newborns is that it is a preventable condition as long as it's treated immediately.

That does lead, nevertheless, to samples of these dried blood spots sitting in a lab in Edmonton on every newborn baby in the province. Occasionally I have legitimate reason to try to get those samples, or similar samples of people in other provinces. It's difficult to get those samples. Certainly they would not be given out to research studies, certainly not with identifying information and so forth. We have to make a very special case to get them. There should be safeguards that say that this specimen is an archived sample and should only be used under very specific circumstances. I certainly would not suggest they should be used for general research or to, say, match a crime scene sample with a particular individual born 20 years ago. These samples have been around for more than 20 years.

The Chair: I want to thank you very much for that, Sharon and Mr. Bridge, because I was going to ask you about the DNA test on children and the fact that Canada's a signatory to the rights of the child convention. I just wondered where is the right of that child and how much do they know and how much should they know and how do they get to know it.

Further, what is the responsibility? You say you've protected it. The question that was raised yesterday, and perhaps you might know something about the answer that we didn't seem to get yesterday, was about children who are adopted and who want to know later on in life, prior to marriage or other commitments, anything that might be in their family history. I think the suggestion yesterday was that parents who are donors, semen donors for artificial insemination or in vitro fertilization, etc., would have to give a blood sample that would be held in trust. That was a very complicated discussion around the rights of the child. Is there anything special, outside of looking at that through legislation, that we have that we're unfamiliar with?

Mr. Bridge: First of all, children cannot give informed consent to any genetic testing -

The Chair: I know that.

Mr. Bridge: In the case of phenylketonuria, it is done because of the obvious benefit to them if treated. In general, any genetic testing is postponed until the age of majority if it's not something with an onset in childhood years that could be treatable.

For conditions where the medical problems occur in childhood age range and there is some treatment, we do test children, sometimes even predictably. Perhaps I can give you one specific example, the dominant disease that causes a type of eye cancer called retinoblastoma. People would even go to the extent of doing prenatal diagnosis of that condition, not with any thought of terminating the pregnancy but because at the time of delivery these children with a 50% risk of the eye cancer have to undergo eye examination under general anaesthetic every few weeks until they're about age three or four. Half of them don't need that, and it's a major risk to undergo the general anaesthesia. So if you test them prenatally you can say this baby doesn't need ever to be tested, versus this other baby that needs to be monitored quite specifically. So that's the case where we would actually do a predictive test.

.1425

The Chair: Is that hereditary in the first place?

Mr. Bridge: Some cases are, some cases are not, but obviously you'd have to know which ones.

In terms of adoption, you can use genetic testing to show genetic relationships between adoptees and their biological relatives. That's different from studying genetic diseases. That's like a paternity test or a biological relationship test, but the same technology can be used for that.

In terms of genetic diseases it's somewhat more problematic. If somebody says they want to find out if they have a family history of something, in general that testing, I would suggest, is probably not available. I can think of some cases where it has occurred. Most of them have resulted in problems. But most families find out about genetic diseases not through previous testing but actually through the birth of an affected child. Once that first case has occurred, then the rest of the family gets tested.

So in the case of somebody who is adopted, they will probably go along in the dark just like the rest of the population until something unforeseen happens.

Ms Steeves: Thank you.

We have about five minutes left. Mr. Assadourian, do you have a brief question?

Mr. Sarkis Assadourian: I have a quick question. Maybe you should join our committee as an honorary member and expert on DNA. Of the 2,500 cases you have tested here in Alberta, how many of them really got the benefit of knowing they have a disease because it was proved in the DNA testing? Was there any follow-up benefit of that to society medically?

Mr. Bridge: They always get follow-up. The benefit of what we do is to provide information. Usually, most of the genetic diseases are not treatable, but one of the crippling aspects of being at risk of a genetic disease is uncertainty. So if you have a parent die of Huntington's disease and you have a 50-50 risk of getting it, why would somebody who doesn't have symptoms get a test to say yes, I have the mutation, or no, I don't? It's to get away from the uncertainty. Those who don't have it presumably go forward and have no further fear of Huntington's themselves, although they still have to live with it in other family members. Those who do have it may make reproductive choices, such as adoption or not having children or various other lifestyle decisions. It's getting away from the uncertainty.

The ultimate goal of genetic testing will be to provide people with information about their status before they have symptoms or before they have children with the disease.

Ms Steeves: Mrs. Hayes, did you have a quick question? Then there's one more gentleman at the mike.

Mrs. Sharon Hayes: I have a quick question to ask for a clarification. I personally know a family that has coped with Huntington's, or tried to, and it's a very tragic disease. My understanding is that they could have had their child tested at the age of one or two. Is that the case?

Mr. Bridge: No. We very strongly discourage that, and it would be extremely difficult to get somebody to perform that test.

Mrs. Sharon Hayes: Is that a provincial or federal guideline?

Mr. Bridge: It's not in any legislation. It's a professional guideline and recommendation.

Mrs. Sharon Hayes: Going back to the rights of the child, it's simply an ethical guideline right now.

Mr. Bridge: There's no benefit accruing to the child of knowing prior to let's say the age of18 whether or not they have it, so the default setting will be that the test would not be offered. You would have to make a very specific ad hoc argument on why we should test the child for a disorder that doesn't show until let's say age 40.

Mrs. Sharon Hayes: My understanding was that they had an option to do that.

Mr. Bridge: I don't say that it has never happened or that it doesn't happen occasionally, but in general it should not happen.

Mrs. Sharon Hayes: Thank you.

Ms Steeves: Thank you very much for your contribution to the dialogue, Dr. Bridge.

Mr. Tim Caulfield (Research Director, Health Law Institute): I'm Tim Caulfield from the Health Law Institute at the University of Alberta.

I'll be extremely brief, given the time, and just highlight for the committee that the issues we have just been talking about concerning genetic risks, pediatric genetics, etc., have all be investigated by numerous groups, such as the HUGO committee, UNESCO, and the Royal Commission on New Reproductive Technologies, which I'm sure you're familiar with. Also, various states in the United States have passed specific genetic legislation. Whether or not we agree with those pieces of legislation, I would encourage the committee to avail themselves of this material.

.1430

It's a very complex area, one that perhaps does warrant specific research. Indeed, research is going on in Alberta, in conjunction with the CRDP at the University of Montreal, looking at pediatric genetics and the rights of the children in many of the situations you yourself highlighted.

I would be happy to help the committee in any way I can.

The Chair: Thank you very much.

Ms Steeves: Our small group had a fascinating discussion about the linkages between genetic testing and discrimination. I understand Gregor Wolbring would like to make the final comments in today's town hall.

Professor Gregor Wolbring (Department of Medical Biochemistry, University of Calgary): Thank you. I am a biochemist in the medical biochemistry department here at the U of C, but I'm also working with a lot of disability groups related to the danger of genetic testing related to discrimination and their status in society.

I would like to make two comments. First, the desire for genetic information reflects our increasing desire in society to make perfect human beings, to make ones who cost less money and are less of a burden. In the future, insurance companies and companies will want to hire them because they want someone who is less of a burden to them and to maximize the profits and minimize the dangers to them. This is a direct reflection of what we're already doing nowadays, with prenatal testing, and where we are also trying to minimize dangers and minimizing the cost to society becomes more and more a major point.

I have in front of me a proposed framework for action on sexual and reproductive health from Health Canada. It uses the term ``prevention'' a lot. You have to support interventions to prevent hereditary disorders, to prevent birth defects. It doesn't say anything about our having to support people and actually give birth to someone with a disability. It shifts away from your giving birth to a child. Society now asks and expects you actually to prevent the disability, prevent the birth defect, for all kinds of reasons. So it's much more than just genetic information, it's much more than the danger of loss of privacy, because you can force people much more than just in privacy matters, because if women know they will get this kind of reaction later on if they give birth, then even if they make a private decision to do something, their privacy is already invaded, because they already know what comes out of that.

The next thing is insurance companies. Of course we have life insurance companies who ask for medical records in order to establish whether you get life insurance. Thalidomide persons don't get life insurance. A lot of us tried. None were successful, to my knowledge, because we have pre-existing conditions.

Genetic information is just another part of medical information, so the principle is already set up to use medical information in a discriminatory way for certain target groups and for certain consumers, such as the insurance companies. Genetics is just one more thing. If we don't go to the roots of this problem, the genetic information is just one more part. If we don't fight the quality control of human beings and say okay, if you have this kind of label we can't do that and you are not allowed to do that and that and that, and if you have this label, we can do it, in the end we will all be part of being labelled. We will all become, as I call it, ``genetic positive''. We will develop a new subset of human beings who are like HIV positive - you are genetic positive.

This will affect different groups earlier than others. As Andy Scott said in our group, a lot of people already are affected. But it's not the majority. The next one would be, for example, the natives, who have a high incidence of diabetes. This is also genetic, so do we also screen them and see what we can do there?

It's very dangerous if we don't see the whole associated structure which is involved in pushing these kinds of technologies. You can do research in your lab and do a lot of good research, but society has a certain way of using this kind of technology. There is where I think we have to cut in and show that everyone is of equal worth.

.1435

I think Mrs. Steeves told us a short story that is really appalling. Maybe she would want to share that answer, because it's really saying that we are much past any unbiased use of information.

Ms Steeves: I think I can do this in under a minute. It's one of those cases in which kids say the darnedest things - and sometimes doctors say the darnedest things, too.

I was pregnant with my second daughter, and I was told to have an ultrasound. I said there was no diagnostic reason and would rather not have it done. The doctor said I had to in case the baby was disabled or deformed in some way. I said that I wouldn't consider aborting the baby in those circumstances. The doctor, who happened to be a woman, looked at me and said ``Well look at you''. I said ``I beg your pardon?'' She said that obviously no one did testing before I was born. I asked her if that meant my mother should have aborted me because I happened to have one small hand and one large hand.

I think those types of attitudes illustrate Gregor's point really well. If we're looking for a certain type of perfection, I think we're fooling ourselves. We're all different in our abilities, and it's those differences that lend such diversity to our experiences.

The Chair: All I can say, Valerie, is that without your very competent input, we would not have had the very fine turnout and discussion we've had today, nor would we have had the plans for this whole committee.

I can only tell you that one of the concerns we've been thinking about as a committee is the fact that it is said that genetic discrimination is going to be the human rights issue of the 21st century. As a committee, I think we're quite concerned about this subject. I'm therefore really very pleased that Gregor brought this into sharper focus. I think it was inherent in the questions that Sharon, Andy Scott, and the rest of us asked.

I want to thank all of our experts very much for coming and spending this time and for enlightening us today. Your participation will help us think through some very complex issues.

The meeting is adjourned.

Return to Committee Home Page