[Recorded by Electronic Apparatus]

Thursday, December 5, 1996

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[English]

The Chair: Ladies and gentlemen, we have a quorum. We are most pleased to welcome our very special and enlightened guests today. They will perhaps add some additional light to what is turning out to be an enormous and quite controversial subject.

There is a saying that government has the very difficult task of accurately assessing the pulse of the population, allowing us to examine an issue, seek the help of very expert advice - that you represent here today - and get public input. Then Parliament should be able to respond.

Well, the question is the degree of the response that would be required on our part: whether we should suggest and recommend programs, and the nature of these programs, or whether legislation will best respond.

We're finding very conflicting interests in this particular field of undertaking. This committee is becoming a little more expert in a field that has had a fair amount of investigation, but so far we haven't been able to find any particular line or direction that will enable us to address this growing phenomenon in our society. So we're more than pleased to have you join us.

We have some serious concerns with respect to the insurance companies and their role, the health industry and its roles, and the medicalization of genetic information vis-à-vis the marketing of this information, as it is being researched and developed by the private sector, particularly those organizations that expect to see some financial return to replace the moneys invested in research.

So those are the areas where you will find the committee might ask some questions. We have had one table with representatives, and we're looking forward to additional expert advice from you.

I'm Sheila Finestone, chair of this committee.

[Translation]

Mr. Bernier, please go ahead.

Mr. Bernier (Mégantic - Compton - Stanstead): I'm Maurice Bernier. I am the member for Mégantic - Compton - Stanstead and I represent the Official Opposition.

[English]

Mr. MacLellan (Cape Breton - The Sydneys): I'm Russell MacLellan, member of Parliament for Cape Breton - The Sydneys in Nova Scotia.

Mr. Allmand: Warren Allmand, from Montreal.

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The Chair: Thank you very much.

We're very fortunate today to have with us truly outstanding experts. Rather than my introducing you and giving a long background, I would just as soon ask you to be be good enough to introduce yourselves.

Mr. Eugene Oscapella (Policy Adviser, Office of the Privacy Commissioner): Thank you, Madam Chair. My name is Eugene Oscapella. I'm an Ottawa lawyer, and policy adviser to the Office of the Privacy Commissioner of Canada. I've done work on genetic privacy and drug-testing issues over the past several years.

Mr. Charles Black (Senior Adviser, Insurance Operations, Canadian Life and Health Insurance Association): I'm Charles Black. I'm on staff with the Canadian Life and Health Insurance Association, the industry body for the life and health insurers in Canada. For quite a few years I've been involved with issues involving human rights and HIV-AIDS, and very much with the privacy issue. So I'm very pleased to be here and carry on a dialogue with you this morning.

The Chair: Thank you. The names I'm giving you are going to be in order of appearance. It's just quite interesting that these are three male guests before our two women guests.

Mr. Trudo Lemmens (Researcher, Bio-medical Ethics Unit, McGill University): My name is Trudo Lemmens. I'm working with the Bio-medical Ethics Unit at McGill University. I'm also a visiting fellow at the Centre de recherche en droit public of the University of Montreal. I co-authored, and was the main author of, a recent report entitled Genetics in Life, Disability and Additional Health Insurance in Canada: a Comparative Legal and Ethical Analysis. I've also recently published a paper on genetics and employment. I thank you for inviting me and asking me to share with you the findings of this report, which was mainly sponsored by the MELSI committee.

Ms Cathleen Morrison (Executive Director, Canadian Cystic Fibrosis Foundation): My name is Cathleen Morrison. I'm executive director of the Canadian Cystic Fibrosis Foundation. Cystic fibrosis is a disease that is inherited by means of a defective gene, one copy of which is inherited from each parent. It's a progressive disease, and ultimately it's a fatal disease.

Our members across Canada are really concerned about issues of privacy, genetic testing, access to testing, and access to counselling, but they are also concerned about what will happen to the files if they permit a test to be taken.

So I'm very delighted that you thought of including us today. Thank you very much.

Professor Margaret A. Somerville (Professor, Faculties of Law and Medicine, and Director, McGill Centre for Medicine, Ethics and Law, McGill University): I am Margaret Somerville, from the McGill Centre for Medicine, Ethics and Law. I have wide-ranging interests that touch on some of the issues you're looking at. In particular, I'm interested in the interaction of health, human rights, and an emerging concept called human ethics.

I think that situations like the workplace are going to be testing grounds for this, because they are situations to which everybody in our country relates. It's unlike some other areas where we do ethics, where really just particular people are affected by something that has had an impact. This is a very broad-ranging area, so it's very important for public policy, health policy and human rights.

The Chair: We find in you, Dr. Somerville, an incredibly broad area of interests. You cover not only the faculty of law, which we're interested in, but certainly the faculty of medicine. I hope you will be facing off with the business and insurance industries and their perspective on this matter.

Prof. Somerville: Madam Chairman, that's not unusual.

The Chair: So I hear, and so did Doctor Knoppers, who is here. And we've had some very interesting witnesses before us. So I know you're going to add to this bank of knowledge that is overwhelming all of us right now. I thank you for that.

I would ask Eugene Oscapella to start, please.

Committee, in terms of procedure, do you want to hear from all the witnesses, or do you want to stop between the witnesses, and ask questions?

An hon. member: All the witnesses.

Some hon. members: Yes.

The Chair: Mr. Allmand?

Mr. Allmand: We don't have a vote.

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The Chair: Ah, then let's hear from the witnesses and then we'll write you and ask you, or we'll invite you back.

Mr. Oscapella.

Mr. Oscapella: I would like to start off by saying that we, the Office of the Privacy Commissioner of Canada, recognize the very real medical benefits of genetic technology. We're not Luddites. However, one thing we are concerned about is that the highly sensitive personal information generated by genetic testing is going to be misused for purposes that have nothing to do with the medical well-being of the individuals who are being examined.

Now, this may sound unduly pessimistic, but the history of our recent flirtations with another form of biological testing - drug testing - and the ever-increasing thirst of the state and the private sector for personal information about us gives me considerable doubt that genetic technology is going to be used benignly, unless the government takes some very strong steps to prevent that being done.

I'm going to turn first to drug testing, because drug testing is a technology that's being used right now, much more than genetic technology, in terms of the workplace.

Drug testing is the testing of individuals to see if they've consumed certain substances that our governments have rather arbitrarily decided are illegal. Drug testing has taught us that we do not need a valid scientific reason for intruding into the body of an individual. Drug testing is a sham. This extraordinarily intrusive technology is being touted as the way to make our society virtuous, noble, efficient and drug-free. It's encouraging parents to spy on their children, governments to spy on their citizens, and employers to spy on their employees.

You might be interested to know that in Georgia a law requires legislators to be drug-tested before they can hold office. We might consider that here. I don't know how you'd feel about that.

The point I'd like to make is that this sort of unprincipled and, if I may say, McCarthyist drug testing is paving the way and laying down a red carpet on top of the pavement for unprincipled genetic testing.

Through drug testing we've begun to institutionalize the right of the state, employers and service-providers to ignore the fundamental human right of privacy.

Drug testing is teaching us that we have no right to respect for the integrity of our bodies. If you can justify drug testing on the flimsy justifications now being advanced for it, you can easily justify a government, an employer or a service-provider getting access to genetic information about individuals under their control.

To justify such intrusive behaviour, all you need is a frenzy, such as we see with the war on drugs, and a good witch hunt, such as we saw in Europe in the 1930s and 1940s, with the programs that occurred there, and the Holocaust. All you need is a good frenzy, whipped up by some group in society, to encourage governments to tolerate extreme forms of genetic testing.

Let me give you some examples of how genetic information has been misused, or will be misused. The U.S. military now is doing DNA testing of all its members in order to get a sample, so that when they get blown to pieces on the battlefield, their remains can be identified. That perhaps is a legitimate use for genetic technology. But what they're also doing is making that information available to law enforcement authorities.

So we are seeing genetic information samples being taken for one purpose and being co-opted for another purpose entirely. In essence the U.S. military is conducting a search that it could otherwise only do with a search warrant, but it is conducting a search on all the members of the armed forces, and treating them as suspected criminals.

In the past we've seen the misuse of testing for sickle-cell trait to discriminate in employment. We know that sickle-cell trait and sickle cell are associated with Mediterranean groups and blacks in society. Some people argue that sickle-cell testing has been a mechanism for discriminating against minority groups in society.

We are searching for genes that indicate anti-social traits. We're looking for genes that would indicate a propensity to violent behaviour. What are we going to do with this information when we get it? We don't know how to handle this information, but we're looking for this information. We really have to consider what we're going to do.

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I have no doubt there will be pressure, eugenic pressures, in the name of reducing health care costs. After all, some people will argue that if we reduce the cost of health care by eliminating genetically defective children, that will be a great saving to society. So there's going to be pressure for governments to get involved in acquiring genetic information about their citizens.

There's also the pressure to expand even the legitimate uses of genetic information. For example, the government is now looking at a DNA database of convicted offenders, so that they can match their samples against unsolved crimes, and samples from unsolved crime scenes, to determine if they may have been the perpetrator of the crimes.

In the United States we're seeing that this legislation was initially introduced in a very narrow set of circumstances, for violent crimes, things like that. So genetic samples would be taken from people only in a very narrow set of circumstances.

Now the pressure is to expand the circumstances in which that sort of genetic information is being acquired from criminal suspects, even if it has nothing to do with determining their guilt for the crime. But that pressure is there. So there's inevitable pressure to expand the use of some of these technologies, even if their use is legitimate in the first place.

One of the dynamics that is promoting this sort of abuse, just as it's promoting the abuse with the use of drug testing, is money. The biotech testing industry in North America stands to make hundreds of millions if not billions of dollars from persuading employers and governments that they should do drug testing. They will have the same financial incentive in trying to persuade employers, governments, service-providers that they should do genetic testing. There's going to be a lot of money pressing for acceptance of this sort of behaviour.

I'll just speak for one more minute just to make some recommendations.

First, we should ban drug testing in all but a very narrow set of circumstances, as an example of how genetic testing should be dealt with.

We should strictly control the non-medical, secondary uses of genetic information, and to the extent possible keep governments and the private sector out of the business of collecting and using genetic information.

The Chair: Governments?

Mr. Oscapella: Governments and the private sector.

The Chair: Thank you.

Mr. Oscapella: We need a proactive, not a reactive, system. I don't believe human rights legislation is sufficient, because it's a long, unwieldy process to get justice through the system.

What we need is legislation up front to say thou shalt not, rather than to allow people to complain to a board afterwards.

We need to consider additional controls on the cross-border dissemination of personal information by Canadian companies - for example information about drug-use habits, genetic conditions, things like that - so that they will not be shared, not placed in databases in other countries where we have no control over the handling of that information.

As Bruce Phillips, the privacy commissioner, argued several years ago, we need to entrench a constitutional right to privacy in the charter. We've come close to it on two occasions. We have not yet done it. It's extremely important, not only for genetics, not only for drug policy, but for the fundamental human rights you're trying to protect before this committee, that we seek to promote the entrenchment of the right to privacy in the Charter of Rights.

Thank you, Madam Chairman.

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

Mr. Black, please.

Mr. Black: Thank you, Madam Chair. I'd like to focus on some very general aspects of life and health insurance, and then move again into some very brief comments with regard to human rights and privacy. Then I will focus on some aspects of genetic testing as it applies to the insurance world, and as we see it at this point.

I begin by saying that although life and health insurance is only one of the areas that is of concern in the area of genetic research and genetic testing, it itself is a very diverse industry. As I say, my comments are going to be very fairly general. In almost all cases, if we get into more specifics, you'll find there are exceptions to them.

In general, as I say, the industry is quite diverse. There are various forms of life and health insurance that are set up on different bases.

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In general, life and health insurance is a very voluntary industry. Generally speaking, I can say that it is not mandated that any Canadian buy life or health insurance. There may be very good reasons for doing so, but it is not generally required by law.

Life and health insurance deals with uncertainties, or with contingencies of events that either are certain to happen, such as death, but the timing is unknown, or other situations where the happening of the event is unknown, such as a disability, or the need for certain health care treatment.

When an event is certain or known, or has a very high probability, then insurance is no longer relevant. Indeed, if the ultimate objective of genetic research were to remove all the uncertainties of our life, the insurance industry would be one of the casualties. There'd be no need for insurance if we knew everything that was going to happen to us. Certainly my crystal ball doesn't indicate that's going to happen, so I'm not worried about the future of our industry from that viewpoint.

The next point I wanted to make about insurance is that, in general, it deals with similar risks. By bringing together a sufficient number of similar risks, some of these uncertainties can be transferred into a reasonably predictable experience for the group as a whole.

We can't predict what is going to happen to any one individual within that group, but with the knowledge of probability theory, the overall experience of the group is then predictable within a certain margin. A price can be set, and an arrangement can be established, where people with similar risks can come together and share those risks. We're talking here of the financial consequences of death, disability and health conditions in terms of our industry.

The insurance companies are intermediaries that make this process possible, and certainly their objective is to offer insurance as widely as possible to as many Canadians as possible. The trend for decades has been that more and more Canadians are eligible for insurance. Again, speaking generally, we see that the outcome of the genetic research will further that objective. In future, with additional knowledge becoming available, insurance will be possible for an increasing number of Canadians through the voluntary mechanism.

On the human rights front, the last 20 years have been very interesting for insurers, because in some ways there are direct conflicts between the basic concepts of human rights and the basic concepts of insurers. Insurance brings people together in groups to make sharing of risk possible. As you're well aware, one of the underlying concepts of human rights is that individuals should be treated as individuals, not as parts of groups. So in a sense there is a basic conflict.

I think we've been able to work with human rights agencies and in general to establish suitable criteria. Certainly we have worked closely with the human rights commissions and with individuals to develop legislation. There's no question that in many ways insurance is subject to human rights legislation

The basic approach taken is that equal risks should be treated equally, and that unequal risk can be treated differently. For example, in most human rights legislation there is a provision that a distinction, exclusion or preference in an insurance contract that is made on reasonable and bona fide grounds - based on such factors as age, sex, marital status, family status, or handicap - does not violate the basic prohibition of such distinctions in human rights law. It is still an area with a lot of questions, but I believe we have worked effectively with legislators and regulators in this area, to everyone's benefit.

Privacy is an area that was recognized very early by our member companies as an important one. It was recognized that in the course of providing insurance, in the course of evaluating claims, we do obtain a substantial amount of personal information. Much of that information is sensitive, and certainly the last decade dealing with HIV-AIDS has emphasized that fact. As a result, our member companies placed high emphasis on the protection of the confidentiality of that information.

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Back in 1980 our industry became the first industry I know of, and for six years remained the only industry in Canada, that issued and enforced voluntary guidelines on the right to privacy. Indeed, I can recall urging the Canadian government in the early 1980s to adopt the principles established by the Organization for Economic Cooperation and Development, which of course were adopted by Canada in 1984.

Our industry guidelines are based on those OECD principles, and have been revised from time to time, as those principles have changed. They were last revised in 1993. They're being revised now, with the introduction of the model code for the protection of personal information, developed under the coordination of the Canadian Standards Association. We were one of the active participants in establishing that project and working it through.

I believe the Quebec privacy commission would also confirm that we have been active in working with them in implementing the provisions of the Quebec privacy act, which is also generally based on the OECD principles.

Currently we're working with the Ontario government as they prepare legislation regarding health information in Ontario, and with the Department of Finance at the federal level, which in the white paper on the revision of financial services legislation has proposed that regulations relating to privacy be established for the financial services sector. We fully expect that this will be the case over the next few months. Certainly in the white paper the proposal was that those be based on the model code adopted by the CSA and the Standards Council of Canada.

In closing, I'd just like to comment briefly on the area of genetic research. As with other areas of medical research, this is a very important area for our companies to monitor. Each company has at least one full-time person on their staff - or there is a part-time person at smaller companies - who is a medical doctor. It is their responsibility to keep up with developments in medicine generally, both physical and psychiatric, to use that information to modify procedures. As I indicated earlier, the objective is to offer insurance as widely as possible, so they want to keep up to date. So in that sense, genetic research is very much a part of that area being monitored very closely.

Our current assessment - and this is information is provided to me by our medical officers - is that genetic testing, and the information that emerges from that, is of very limited use to insurers. Life and health insurers typically deal with long-term events, such as death and disability. The predictive value of the genetic information that is emerging is simply not adequate, in most cases, to be of value to life and health insurers.

As I say, it's an area that is being monitored very closely. There is currently no intention, either now or in the foreseeable future, to have insurers require genetic testing when someone does apply for insurance.

Some testing is required in some cases when individuals do apply for insurance. Certainly cholesterol levels, blood pressure readings - that type of thing - are fairly standard. Indeed, in some definitions those could be termed genetic in nature. But in terms of the newer DNA-based tests, there is no intention, and no foreseeable situation, where our industry expects they would initiate testing.

The second area is where genetic testing has been conducted, and is part of an individual's health file. Our interest and our protection of privacy does not extend to concealment of information. Indeed, the very basis of insurance is one of full disclosure, or what is sometimes called ``utmost good faith''. So the insurers feel very strongly that to continue to provide insurance to a wide range of Canadians, access to the health information file in its entirety is required. That would include any test results that are part of the file, as I indicated.

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That information would be used only if it is relevant. The confidentiality of that would be carefully protected. It would not be disclosed to any other party without the individual's consent, or in very limited circumstances, where it might be required by law.

There is a third situation where information becomes available - aspects such as family history that would traditionally have led to a decline or rejection of an insurance application. In some cases it is now possible, if the individual chooses to undergo genetic testing and the results are favourable, to issue that insurance policy as applied for. But that is strictly the applicant's choice. That is not dictated by the insurance company.

This is an area we are focusing more attention on. It has not had as much attention in our industry in Canada as in the U.S., primarily because of the different system of funding health care, so it isn't an issue in the health care area of insurance in Canada. But we certainly will be discussing this with groups like yours and with the MELSI committee Dr. Knoppers is very involved in. We look forward to exchanging information and to developing suitable procedures to make sure that the information that does emerge is used properly.

Thank you very much.

The Chair: Thank you, Mr. Black.

The bell indicates that this committee must go and vote in 30 minutes, which means we have to leave here in 20 minutes.

Is it one vote? Does anybody know?

Mr. Allmand: I don't know, but if Mr. Bernier wants to stay, I'll stay. We'd pair each other off.

The Chair: Russell, if you want to stay, you could take the chair and ask questions - or not; it's up to you.

Mr. MacLellan: I'd like to hear the witnesses before the vote.

The Chair: So would I. Perhaps we could hear our witnesses and then, if they would be kind enough to wait, we will come back the second the vote is over. It takes about 25 minutes for the vote.

[Translation]

Mr. Bernier: It's just a vote. It must be on allocation of...

[Inaudible]. Must be the guillotine, Madam Chair.

The Chair: Oh! What can we do. That's life.

Mr. Bernier: Yes, that's life.

[English]

The Chair: Okay. We will leave in 20 minutes.

Please go ahead.

Mr. Lemmens: Madam Chair, honourable members of Parliament, I have argued on other occasions that both federal and provincial governments should address these issues and come up with some safeguards before you are confronted with a growing inequity in society. This, I think, is really an important first step. I would congratulate you, therefore, for holding this session.

Genetic testing is not yet systematically used in the context of insurance and employment, but further developments in genetics and increasing commercial interest will spur interest of employers and insurers. Moreover, genetic test results are already used by insurers and employers. Insurers and employers can already obtain genetic data through accessing medical files. We have to stress that. It's already a problem.

The risk increases that those who need most protection because of their genetic susceptibility will get excluded from many social services. Protection of genetic data is a growing concern and is addressed worldwide.

To give you an idea of its importance and of the developments in the world, at the last World Congress on Bioethics there were more than 60 papers on issues related to ethics and genetic developments. I presented there the results of our report on insurance and genetics in Canada. It was a one-day special symposium on the issue of genetics and insurance.

I copied for you some of the overheads I presented at this conference. They give you a list of the European countries that have introduced sweeping prohibitions on the use of genetics and insurers, recommended legislation, or whose insurers accepted moratoria on using genetics for insurance purposes.

I would urge you to have a look at this list. It's quite an impressive list. The insurance business - and I think it's important to stress this - is still surviving in these countries.

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Nonetheless, there is very stringent legislation. In the U.S. Congress and many American state legislatures, genetic privacy and other protective bills either are being discussed or have already been adopted, and people with genetic disorders are now already protected under the Americans with Disabilities Act. So the United States is also doing things.

Here in Canada, Mr. Black and I recently participated in a forum organized by the MELSI Committee to discuss insurance and genetics. The MELSI Committee supports our recommendation in the report that a task force on genetics and insurance be set up in Canada. We hope to receive further support from the industry and from the authorities on that.

I would like to focus here in my brief remarks on two issues in which our approach seems to differ -

The Chair: Excuse me. Can I just ask you something? Is that the group Dr. Mélançon is in, from Quebec?

Mr. Lemmens: The MELSI Committee is the Canadian Medical, Ethics, Law and Social Issues Committee, sponsored by the federal government.

The Chair: On which sits Dr. Mélançon.

Mr. Lemmens: No, I don't think so. Bartha Knoppers is the chair of that committee, and people like Margaret Lock of McGill University and Mike Burgess of the University of British Columbia are on it. It's a part of the Canadian Genome project, which now has funding problems.

The Chair: Yes, it was Dr. Knoppers. Excuse me.

Mr. Lemmens: I would like to focus on two issues in which our approach seems to differ from the one of the insurance industry. You can obtain more information about the legal and ethical aspects of insurance and genetics in the report I gave to the clerk.

The two points I want to discuss have to do with, first, the nature of genetic data, and second, the concept of fairness or equity and the moral status of contractual freedom.

As to the first point, the nature of genetic data, the question this committee will have to ask is why we treat genetic data differently from other health information. It's the first question we have to address.

Insurers insist that genetic test results cannot be distinguished from other forms of health information and that they always used this information in the past. Genetic information, they argue, is a fundamental aspect of risk determination, and insurers do not ask for tests to exclude people, but to determine their premium. Moreover, applicants for insurance who previously could not obtain insurance because of a history of disease in the family can now profit from test results by showing they are not carrying the mutation, so the issue is not black and white.

What to say about this argument? I would say it's true that distinguishing people on the basis of levels of risk to health is essential in insurance and has always been done, but the fact that something has been done in the past does not justify the practice in the future. New circumstances may require new responses, and the appropriate question is, has the development of genetics created new problems, such as to evoke a different approach from the legislature and from the public in general?

I must immediately say it will be increasingly difficult to distinguish health data from genetic data, so it might be essential to develop an entirely new approach towards all forms of health information, in the privacy sector and also in insurance legislation, but there are specific characteristics of genetics that require us to address these issues right now, and that's what I'm addressing here.

In our report we identify two reasons that genetics requires a different approach. One has to do with the volume of data, and the other with the characteristics of genetics.

First I'll deal with the volume of data. Genetics is producing, as Kevles and Hood, two American specialists, have called it, an orgy of available data. Testing could lead to an astonishing level of risk prediction. Insurance underwriting could become tailored to individual risk profiles as never before, and the amount of information that will become available and the predicative power of many of these tests are really revolutionary.

Because of the predicative power of some of these tests, many people, including insurers, could be tempted to in fact underestimate the remaining level of uncertainty and exclude people as soon as there is a positive test result.

Second, genetic data has other specific characteristics creating particular ethical problems. Previous witnesses have already addressed this. Genetic tests often relate to untreatable conditions, in particular those that are of interest to insurers. I would say it makes it inappropriate to allow testing without professional counselling and to allow third parties to push people towards testing, which is actually already the case.

The developments in genetics and psychiatry might also be of special concern in this issue, in its potential for stigmatization. Many have stressed that genetic data have implications for family members and often even members of the same ethnic group.

Finally, DNA testing is special, because so much information can be extracted from one sample, which can be kept for an indeterminate period of time. Rules on DNA banking are urgently needed in Canada.

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The second point of disagreement with the industry concerns the notion of fairness. Insurers argued it would be unfair to force people to subsidize those at low risk through insurance. For insurers, fairness requires people to pay on the basis of risk. But this, I would say, reflects a vision that everyone has an absolute right to profit from every individual advantage that nature has given. It's an idea that I would say is only shared by the most libertarian theories of justice and is one we don't share in general in Canada.

In Canada we have no difficulty in finding support for the idea that justice requires us to disregard individual differences and to accommodate those who had less luck in the genetic lottery. The predisposition to disease should not affect one's general access to health care, for example. I hope we agree on that.

Some would limit this concept of justice to a very few spheres, and attempts are made to exclude this idea of justice from the debate about private insurance and employment in Canada. The existence of a universal health care has been invoked to argue that private insurance does not play an essential role and does not need additional protection apart from privacy.

Fairness, in other words, is guaranteed on the level of health care, but insurance is something that belongs to the private realm. I must admit this concept of insurance being a completely private contract is reflected in Canadian law, but I cannot go into that more deeply.

Does it necessarily have to be that way? Can you imagine that the law imposes restrictions on what insurers can ask, prohibits medical examination under a certain coverage, or limits the power of an insurer to make distinctions? I would say it's partly done already. Insurers are not allowed to make distinctions, even if it would actuarially make sense, on the basis of, for example, race or ethnic origin. So there are ideas already there.

Someone suggested that providing access to private life insurers only becomes essential to the extent that universal health care and social welfare are diminished. I would say this is already the case in Canada. Budgetary restrictions in health care and social security make it increasingly advantageous to have some additional insurance. Private insurance might become more than a non-primary social good. It really becomes important.

The Chair: Excuse me, Mr. Lemmens. I wondered if you could give us some indication as to how soon you think you might be through, because we have to determine whether we're going to hear Mrs. Morrison now or if we're going to wait and hear Mrs. Morrison and then Madam Somerville. We're waiting for you to do a wrap-up and the challenge, and we're giving you extra time.

Mr. Lemmens: I would say three more minutes, something like that.

The Chair: We may not hear you right now, Mrs. Morrison. Would that be all right with you? We'll be back.

Go ahead please.

Mr. Lemmens: As I said, budgetary restrictions in health care and social security make it already increasingly advantageous to have some additional insurance.

Private insurance is becoming, as I said, a primary social good, maybe. I'm convinced that even without these developments private insurance plays an important role in offering a sense of security for individuals and their families.

It would not seem strange in Canadian society to require certain solidarity in private insurance contracts even with the existence of universal health care. I must admit I feel partly uncomfortable in arguing that private insurance has a public role in Canada.

Some are too keen about this type of argument, and they would invoke this to abolish universal health care and to ignore the role of government in providing access to health care. I would suggest they read the American literature.

Many authors have stressed the serious problems that genetics are creating for access to health care in the U.S., where work and access to work and health insurance are tied together, and where they do not have universal health care. These U.S. authors indicate that genetics make it more than ever necessary to develop a universal health care system, as in Canada or in Europe, to avoid having entire groups of people with genetic anomalies being excluded from work and medicare.

I would say this should be a warning for those who still believe that private health care would offer a better service to Canadians. That is one important lesson, if not the most important one, we can learn from the U.S. situation and the development in genetics.

I would conclude my remarks by pointing out two suggestions that were made earlier about the need for privacy legislation. I totally agree with Eugene Oscapella and Charles Black from the insurance industry that privacy legislation is essential, but I don't think it's sufficient.

People who are in an unequal bargaining power, such as in employment and in insurance, can easily be requested to give up their right to privacy, can easily be asked to consent to give access to medical files. That's what's already happening. So I think we need a more prohibitory or regulatory approach, which would compromise the insurance industry interests and the interests of people affected by genetic disorders.

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The Chair: Thank you very much, Mr. Lemmens. I know you have brought us this copy of Genetics in Life, Disability and Additional Health Insurance in Canada: A Comparative Legal and Ethical Analysis.

[Translation]

You brought an English copy, but since it's published by the Centre de recherche en droit public at the Université de Montréal, I'm sure you also have a copy in French.

Mr. Lemmens: The MELSI committee was going to translate the document, but in light of the changes within the Canadian genome project, the committee does not have the money to get it translated at present. This brief was originally written in English. If the government would like to have it translated, that would be great.

The Chair: I must inform you that the government of Canada and the Parliament of Canada are bilingual institutions. We have two official languages, and I cannot distribute this document unless it is in both official languages of Canada.

We will send it in to be translated. Thank you.

Mr. Lemmens: I would be willing to co-operate.

The Chair: That's a bit strange.

[English]

Really, we must go. I'm sorry. I wonder if perhaps in the exchange you might have around a cup of coffee you might pick up on some of the insurance issues that were just raised, Cathleen, because we did have a case brought to our attention that was very interesting with respect to the insurance companies, etc. It was brought to us by Dr. Mélançon and it's called l'affaire Audet à Chicoutimi. It was a car accident that killed this man, although he did have.... It's a whole production there. I think it is important to us to understand all this.

Thank you very much.

Committee, we have ten minutes to get there, fifteen minutes for the vote and ten minutes to get back.

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.1256

The Chair: The committee is reconvened. Thank you for your patience. We'd like to continue now with Ms Morrison.

Ms Morrison: Thank you, Madame Chair. I'm grateful to be here. The issue you are discussing is of great concern to members of the cystic fibrosis community in Canada.

As you probably know, cystic fibrosis is a multi-organ disease that primarily affects the lungs and the digestive system. It is genetically inherited and ultimately always fatal, we have said, but we're now discovering that there are some individuals, namely men with fertility problems, who are carrying copies of the defective gene.

Another thing to keep in mind is that one Canadian in every 20 or 25 carries the defective gene for cystic fibrosis. It's a good illustration of the stake that all of us have in the issues you are confronting.

I'm delighted to be part of your discussion. I appreciate that you are taking the time and trouble to reflect on these questions. I think action will be urgently needed, but it's worth doing right and doing well.

In the CF world we've seen that molecular genetics is opening a lot of potential in the health care field to cures or effective treatment for problems like cystic fibrosis. At the same time, as you well know, there are far-reaching moral, ethical and potential financial consequences to carrying a deleterious gene.

The concern within the CF community is that people who have a disease that is fatal from birth are suffering enormous financial consequences from the very first day of their lives. You're talking about young families and infants. If there are particular costs that are applied from whatever source because of a disease like this, you don't want to compound the financial disadvantage your family is placed in from the day of the birth of a new child, or from the very first day of diagnosis.

Cystic fibrosis is a single-gene disease, yet what we're discovering is that the effect of this single gene and the particular variation or mutation in the single gene can differ. Even within a family where two or three children inherit the same defect, the disease isn't necessarily the same. So there are other mitigating factors or genes.

Our foundation is sponsoring research into these very complex questions. So I think it's worth being aware that even if you are dealing with a single-gene disorder, you're dealing with a very complex situation with respect to the health consequences.

When our foundation was asked a few years ago to appear before the royal commission on new reproductive technologies, we confronted something that I think you are recognizing around this table, and I can feel that there's tremendous interest in these questions.

.1300

The issues don't break down around party lines. With respect to cystic fibrosis, the gene is not distributed according to political or religious affiliation. Our membership is made up of people who hold every type of opinion and lifestyle that we know of in Canada, although I should be clear that under usual circumstances the gene is inherited in Caucasian populations only, which includes people of Asian origin - Indians and Pakistanis - and South Americans.

One principle that we have recognized is central is that the responses to the issues you are considering are very personal and individual. People see the questions and the problems in very different ways, depending on their place of origin or their family circumstances.

We do see the need to preserve individual choice. We need voluntary consent to treatment and voluntary consent to testing and screening. This consent should be done on an informed basis. So I agree with an earlier witness that it's important to have counselling go along with a genetic test.

Informed consent can have force and effect only when people understand the consequences of what they're consenting to, when they have a sense of how reliable the test is, the limits of its reliability, and the downstream potential for discrimination or misuse of the information, or for stigmatization.

For example, what is the potential for loss of insurability and/or loss of employability if a test is taken and found to be positive? Furthermore, what if that test result is wrong? That can certainly happen.

Our members are profoundly committed to preserving the principles of privacy and confidentiality of personal information. I agree that there may be situations where other family members or other interests may be able to make a legitimate case for access to that information. However, these areas of departure from the principle of privacy need to be founded in a solid ethical context, and need to be clearly understood and delineated, and should happen only after a thorough discussion involving affected players, professionals and broad public debate.

There are also issues of access and cost. How should we determine when a test ought to be offered and whether that test should be available at public expense? If testing is not to be offered universally, is there a plan to provide access on an equitable priority basis?

The health care system is in a cutback mode - this is not news to anyone here - and universal health insurance does have its limits. Certain costs already have strong private participation. Drug costs are an example. Drug costs have not been part of our health care system all the way through, and private insurance companies may find that costs from the health care system are increasingly being transferred to their shoulders.

Canadians may agree that the private industry has a legitimate business role in employing people and in making money, but it's clear that some restrictions will be needed, otherwise we will see a situation of severe disadvantage compounded. On the basis of genetic inheritance alone, we would urge that there be specific measures to protect the privacy of personal information and to protect against adverse discrimination on the grounds of genetic inheritance.

.1305

We haven't gone so far as to analyse what the right route is for this, such as whether the human rights route should be overlooked. Maybe it should be incorporated into an overall vision, but I certainly understand how individuals feel when the onus is on them, within their place of work or in their community, to assert their individual rights.

Maybe that's enough for me to say at this point.

The Chair: I missed something you just said. You said something to the effect that restrictions, the nature of the coverage with respect to human rights.... What did you just say?

Ms Morrison: Two of the witnesses have suggested that changes to the human rights legislation may not be the most effective route to implementing the principle of non-discrimination. Personally, I would agree with that assertion, although it's not a position taken by the Canadian Cystic Fibrosis Foundation at this point.

I'm not certain that I would want to suggest that a change to human rights law should be completely overlooked. It should be seen in context. I agree that it would be best to place an onus on employers and insurance companies applying some restrictions with respect to the access to personal information of a genetic nature and the uses to which that information may be put.

The Chair: The issue of privacy as a human right, as is underscored in many international covenants and in UNESCO documents - do you see privacy as a human right?

Ms Morrison: Definitely. The problem is when you come down to the specifics, how do you protect privacy? If you were to implement a restriction in the federal workplace and confine your recommendation to the human rights auspices alone, you then put the onus on the aggrieved individual to follow a fairly laborious course in asserting his or her rights.

I was interested in the point made by two other witnesses, but I wouldn't want to concede, on behalf of the families I came to represent, that this forum should be overlooked. I just think there may be other ways to implement and uphold that principle of privacy of personal information.

The Chair: Thank you for the summaries.

Dr. Somerville, we have wanted you here on a number of different occasions. We're all very pleased that you could join our panel today. We look forward to your observations.

Prof. Somerville: Thank you, Madam Chair.

At the risk of talking in platitudes or truisms and saying things I can't resist saying, much has been brought up by the other witnesses we've heard here this morning. For the benefit of the committee and with its tolerance I would like to say that genetics requires us to rethink, even reimagine, our assumptions, attitudes, values and beliefs. It involves a difference in kind, not just degree, with respect to some of the issues we've faced in the past.

I think we have to be very careful - I think some of the witnesses pointed this out in specific instances - that we don't just put the health cloak or medical cloak on genetics and think that makes it like every other health or medical issue we've had, and we proceed to deal with it that way, not recognizing what the fundamental differences might be. Those differences can be absolutely crucial to dealing with this in an ethical manner.

Perhaps we can capture how different it is when we think of it as a journey into vast inner space, a journey relatively equal in distance to our journey into outer space. The knowledge that we are obtaining from genetics is equally as mind-altering. In a way, what we're doing here with this specific issue is trying to look at that, I would suggest to you, as a lens into that great unknown.

.1310

There's a wonderful Japanese saying I sometimes use, which says that as the radius of knowledge expands, the circumference of ignorance increases. I always think of it as like a laser beam going out into the darkness of our unknowing. What that does is it opens up a much broader circumference of all the things that we now don't know, but that we have to work out, and obviously that's what we're doing here.

What we are addressing are the most fundamental, wide-ranging values on which our society is based, in dealing with genetics. We are also addressing - and this is what makes it unusual, because you don't often get these in such close relationship - the most individual, intimate, personal, moral issues. That's why genetics causes us so much trouble, I think, in terms of dealing with it. We almost have a feeling that we can't grasp it. You actually expressed that this morning when you opened this committee - that it seemed so difficult to grasp it in a way that you could deal with it, in a way that you usually feel is adequate, for want of a better word.

Just to pick up some of the issues that other people have raised - which I think are important - first of all, Mr. Oscapella said you can't look at this aside from drug testing, and that's true. This is part of larger testing policies. We can't look at this issue in isolation. We have to see it in the greater world to which it belongs, at the same time recognizing that it has many differences from those worlds. But I think those worlds will be where we start to see where we would move.

Secondly, we should work from a basis of what I would call fair information practices governing personal information. To assess what is fair is really a community judgment about how we use this. With respect to what Mr. Black said, I think we've got to get over the technological imperative. What the technological imperative says is ``have technology, must use.'' What we have to do here is make a choice as to what technology we will use when. For instance, if we really decide, which I hope we would, that it's not right to have genetic testing as a basis for insurance - and I'll come back to why I think that's not right - then it's absolutely illogical to allow genetic testing results in medical records to be used as a basis for insurance; that's inconsistent, and we've got to be careful.

One of the other issues here is that in the past.... If we take the insurance industry, it's a very good example of it. The insurance industry is based on chance. We had no option but to use chance. Actually, in using that chance, that's the basis on which the industry was developed. Now, in a lot of these instances we can eliminate that chance and have choice. For instance, the insurance company can choose much more accurately who it will insure, and most importantly who it will not insure. Likewise, if you take this on a broader scale, we can choose much more the nature of our children, for instance, through genetics and reproductive technology.

So we've seen a shift with these technologies from chance to choice, but because we've got choice doesn't mean that we should always use it, and it certainly doesn't mean that it's always ethical to use that choice. So I would suggest to you that we sometimes now have to use our choice to choose chance, which is a strange move to have -

The Chair: I think we might quote you on that. It might be the opening statement.

Prof. Somerville: But that's what.... For instance, in the insurance industry, within certain limits, I would say let's choose chance. Why? Because I think that will operate most justly across our society.

You know, life is a lottery, and life is a fatal illness. There are a lot of things that genetics has opened up to us in this respect. For instance, we're at risk of thinking that for most of our life we're healthy. One of my physician colleagues said to me the other day, ``You know, Margo, the well are only the undiagnosed sick.'' That's the sort of thing we've got to have in mind.

.1315

I think we can have a very good example of it for ourselves in that we know we're going to die but we're not preoccupied with it constantly, every minute of the day. However, if somebody has diagnosed us with a fatal illness, with a reasonable assessment of when we probably will die, it makes a huge difference.

So we don't live in our psyche in the same way we do when we know we're going to die. That's what this information has the potential to do.

If, for instance - and I'm just using the insurance industry because you're here, Charles; it's an easy one we've had in the committee, but there are all sorts of other areas where it would be used as well. If we force people to live their lives knowing things they perhaps would be better off not knowing, or at least without an absolutely free choice about whether they want to know it. For example, if you can't get a job unless you have this test, it is not a free choice to have that test. If you can't get insurance without it, and you have to have insurance because you have to try to protect your children, then that's not a free choice.

That's what we call ``mandatory'' testing as compared with ``compulsory'' testing. Compulsory testing means you can't get out of it, they're going to test you. Mandatory testing means it has an appearance of being totally voluntary but the things you need and can only get by going through the passage of that test in a sense makes that test quasi-compulsory, or mandatory, the word we use in the HIV context. So I want to raise that as an issue.

The other thing I would like to point out - and I think this is an emerging trend in our ethics work, something I've spoken about before to another committee in this Parliament - is that we can't only consider what is legal. If it's illegal, that's the end of it, but we also have to ask, seeing as it's legal, is it unethical? There may be some things we can do currently with genetic testing that are legal but are probably, I would suggest to you, unethical.

I think it's a further question, when you decide that it would be unethical, how you want to make sure that people act in a way that our general community in Canada thinks is ethical with respect to what we're doing. I would suggest to you that the order of analysis is not neutral here. Our first concern should be, what is it ethical to do and not to do with genetic testing? Then, having done that, how do those ethics conform with our current law? Do we need to change the law? Do we need to add to it? How do we need to use the law now to ensure that this ethical position is the one we adopt? So there's a huge amount of work to be done here.

We may indeed need some general legislation, although how specific, I'm not certain. I think that remains to be seen. I would also point out for the committee's information, although somebody else may have told you this in the past, that there is a draft model genetics privacy act in the United States. It was drafted by Professor George Annas and Professor Leonard Glantz of Boston University. I had a tiny little bit to do with it when it was being drafted.

The Chair: Can we get a copy of that?

Prof. Somerville: Yes. In fact, I think Mr. Lemmens has a copy here. I would suggest that the committee look at it. It's a general act. It has a lot of very good suggestions in it, almost all of which I would agree with.

One that I would suggest to you is perhaps particularly important, and that I haven't seen elsewhere, is the idea that you make the companies that carry out genetic testing and the staff that work on it, technicians or laboratory people, personally liable unless they are assured that this is a voluntary genetic testing situation, that the person whose genetic material they're testing has indeed given fully informed and valid consent to the testing.

There were reports at one stage of, for instance, blood tests being taken in the employment situation. I heard this in relation to the United States, not Canada. The employers were sending off part of the blood to have it genetically tested, even though the person who had given the blood sample was not aware that this was the case. It's relatively common procedure to have a blood test prior to employment if you're having a pre-employment medical. So I think we have to think of new ways to implement that.

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I would also point out that if we really think imaginatively about what we're trying to achieve in the workplace by not hiring people on the basis of genetic tests, we have a parallel with what we did with medical testing for immigration at one stage. We're trying to change that now in Canada.

What we were really looking for, if you analyse our tests, were the perfectly healthy, immortal immigrants. A lot of workplace people almost had the vision that if they could do all these tests, they could get somebody who wouldn't ever get sick. We have to be realistic and realize that of course we're all going to get sick, some of us sooner than others and some later.

We have to make sure this testing doesn't give us that false reassurance that everything is all right, and in doing so - and this is the most important thing - exclude all of these other people, who are really excluded on what I would very strongly say to you is a most insidious form of discrimination.

Somehow we have to accept our human condition and incorporate that into our social, political, work and personal lives. With the extended use of this testing, particularly if it became institutionalized so it was the normal thing to do, I fear for how people would react to that, both psychologically and personally, in their relationships with others and certainly in respect of the way they live their lives.

To conclude, there are essentially four basic presumptions you can make to what you will do about regulating this testing.

The first one is simply, yes, let's do testing. There's not very much inhibition on that. Let's take in the workplace.

That tended to be the presumption used up until relatively recently, but we have to put that into context. It was the presumption used when most of our tests were pretty weak. We had very little that we could really test for, so it wasn't a terribly harmful presumption to use.

Once we got more testing, we went to an approach of yes, testing, unless it's unjustified. Where we saw the first major concern about that was HIV testing. When we looked at HIV testing in relation to employment, insurance, disability insurance, etc., we said, gosh, it's just not okay to use these tests.

The third position is no testing unless justified. I would suggest that's the position we should move to: a basic presumption against testing unless you can show it's justified. And the justification should be very specific in relation to the individual person and the individual situation for which you want to use the testing.

The fourth position is simply no testing. We could decide no, we won't have this testing at all, except as a totally private undertaking, where the information is completely protected under legislation that gives that person the right of total privacy.

Madam Chairwoman, I think those are your options. I'm sure the committee will make a wise decision.

The Chair: This committee might decide they've bitten off more than they can chew, but they'll make some observations, that's for certain.

[Translation]

Mr. Bernier, please go ahead.

Mr. Bernier: Unfortunately, Madam Chair, I'm going to have to apologize to our witnesses right away. I found their presentations very interesting, but I'm already late for a meeting that I called myself. So I'm going to have to be leaving.

Thank you for the information that you have provided us with. I will read carefully the documents you will leave with us. I hope that we will have the opportunity to discuss these issues in the future, because I found your remarks very interesting.

Thank you.

The Chair: We're going to have to give up the room in a few moments, but we still have15 minutes.

Thank you, Mr. Bernier. If you have any specific questions, you can dash off a memo and we will forward it to the right person.

Mr. Bernier: Fine.

The Chair: That way, at least we will be able to get some answers. I know how difficult it is to bring back witnesses.

Mr. Bernier: Fine. Thank you.

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[English]

The Chair: Warren Allmand. It's a little different from the first study you did on privacy, isn't it, Mr. Allmand?

Mr. Allmand: Yes, Open and Shut. Ten years later, they're all in new technologies.

I have several questions. I wanted to start with Mr. Lemmens. You said that some European countries have already legislated in this field. Could you tell us which ones?

Mr. Lemmens: There are three European countries with very clear legislation that prohibits the use of genetics for insurance purposes. Belgium was the first country; we have also Norway and Austria. In these countries it's not only prohibited to request genetic tests from insurance applicants, but the law also prohibits people from freely submitting their own genetic test results to insurance. Of course that's to avoid people applying for insurance being told that on the basis of a family history of disease they can't be insured unless they might come up with a positive or with an interesting test result, which means a negative test result. So they really prohibit the use of genetics for insurance purposes.

There are two countries in which there are moratoria on the use of genetics: France and the Netherlands. In the Netherlands there is an interesting system where a kind of basic insurance contract is offered under a certain amount, which amounts to up to $140,000 Canadian. Under this amount, insurers agree they would not discriminate on the basis of genetic test results; above that amount, if people want to have higher life insurance, there could be medical questions asked and they could discriminate on the basis of family history of disease.

Mr. Allmand: What about with respect to those laws if the genetic test results are already in the medical file? I think Mr. Black or somebody said that while they would not ask if it was in the file, under the obligations of full disclosure they would have the right to see what was in the file. How does European legislation treat that sort of thing?

Mr. Lemmens: They are struggling with this issue. I must immediately admit we won't go there for the total answer to these problems, because they're struggling of course with the fact that people are already traditionally discriminated against on the basis of family diseases. In fact, insurers could easily avoid using the concrete results of genetic tests by simply using other health factors and calculating the risk for premature death. So there is a way of getting around this.

In Europe, the European Parliament and the European Council both recommended already that legislation be implemented, and they're looking into the issue of not only protecting clearly the results of genetic tests but also genetic information that's available in medical files. There are some questions to be solved there.

An interesting proposal has also been made in the United Kingdom, where the first advisory committee on genetic testing has been established. I think it's a route we should go in Canada, where federal or provincial genetic testing committees could look into the issue of not only quality control of genetic tests but also into the reasonableness of specific genetic tests for specific purposes. I think that's a route we could go for ensuring we're not only dealing with the issues of genetics and insurance, but also genetics and employment. The model of human rights commissions could be used in that respect.

Mr. Allmand: Next, I have a question for Dr. Somerville. Maybe Ms Morrison may also want to answer it. I want to be corrected on this if I'm wrong, but it seems to me that these genetic tests will say more at the present time about certain diseases or problems than they will about others. Consequently, if they are being used or if they're not outlawed, there's a sort of discrimination. If I have disease A, which is not detected through testing, even though I'm just as much at risk - as you say, life is a lottery - I get my insurance maybe at a low rate. Person B, who has maybe cystic fibrosis, and since genetic testing is obvious, almost, in this case, they start way behind the start line. And then you may have C. In other words, there seems to be a lot of discrimination, and how do you make it a level playing field with respect to everybody?

.1330

Prof. Somerville: That's always been the case, Mr. Allmand. For instance, if you had a visible disease, you wouldn't get insurance, whereas if you had something else that there wasn't any way to test for or detect, you would have received insurance.

Certainly we haven't always acted logically. For instance, in one study that was done when we were looking at insurance and HIV infection they were able to show it was almost the same amount, slightly above or slightly under, to let people into Canada as immigrants who had a history of family heart disease as compared with people who are HIV-infected. The costs were not very different in terms of projected future medical costs, yet we were going to exclude on the basis of it being too costly to our health care system for HIV but not for the heart attacks.

So I think we also have emotional reactions to some of the things we deal with. What you're saying is correct, that it's fortuitous what you can happen to test for.

The other possibility is that in some of the conditions in the future there might be multiple genetic interaction that's required for certain developments of the condition. You may be able to test for one of them but not the others. For instance, there might be something else present that would actually protect you even though you have the marker for this condition. This is the other thing we have that the general public sometimes don't understand.

With certain genetic tests all you're being told is that you have a predisposition or a likelihood but you can't know for certain that you're going to get it.

One of the things we discussed.... I'll give you another example to show you how complicated this is. There was a small meeting in Oxford last year and we happened to have Professor James Watson, who is the discoverer of the double helix, there. The topic discussed - and it was brought up here this morning - was if we do find the gene for what's called hyper-aggressivity, that is, these children who become killers, should we screen in utero for that gene? This was the hypothetical. People were not thinking of doing this, but for instance would the state be able to say you really must have an abortion because we can't afford to have that child?

On the other hand, one possibility raised was that maybe all of our great leaders, in particular our politicians, all carry this gene but have another gene that modifies it and makes them into a great leader instead of a violent criminal. So, you see, that's the sort of thing we really have to be extraordinarily careful about.

To implement your fortuitousness, which you see as being the fairer system - or I suspect you see that, and I don't want to put words in your mouth - then what you have to do is what I suggested. You have to choose chance. Only instead of being left with chance because there's nothing else you can do, you say no, I think this is the fairer system. Interestingly, this is not the first time that's been suggested.

For instance, when we got into a terrible situation about how to allocate organs for transplantation when there weren't enough, possibly the most ethical system was actually a lottery. We thought a lot of people wouldn't accept that, but it would have been to choose a chance mechanism as being actually the ethically preferable approach.

Mr. Allmand: Before more people answer, there's another side to the chance situation, and that is how research on cures is being advanced without sometimes us even knowing. In other words, you have all these various diseases, some that are more detectable by genetic testing, but who knows?

For example, Ms Morrison, you said right now that cystic fibrosis is inherited, single gene and so on. But somewhere in the world somebody may all of a sudden, just like Dr. Salk did years ago, come forward with a great cure or a control drug or whatever, which the person who's been.... This isn't taken into the equation. That's kind of fortuitous too, I would think.

Ms Morrison: Thank you, and yes, we think we can do that. We think we can do this in Canada. After all, it was our scientists who discovered the gene responsible for cystic fibrosis.

To an extent, when you identify which one of us in this room, or which two of us in this room, carries the defective gene for CF you're not really changing the financial odds for a company that wishes to insure us all. You're simply identifying which of the two are involved with that particular disease. So it is a very complex issue.

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We've seen, among families involved with cystic fibrosis, that parents are now exercising great caution in permitting their non-affected children to be tested for carrier status. Presumably, any child who's a carrier of the CF gene could potentially pass on cystic fibrosis to a future generation. There's now great caution in the CF community, because people are really concerned about what will happen to their files.

I've had families tell me they're tremendously alarmed that they had permitted this to happen, that they had permitted some of their minor children to be tested. They are quite anxious about what will happen. Indeed, genetic counsellors are beginning to develop their own policies and are actually refusing, in many cases, to test minor children.

With respect to your basic question about the discrimination that seems to fall arbitrarily in one quarter within a given community, I recall one case in the United States of a woman who was discovered to be carrying a baby who would have cystic fibrosis. The woman was told by her HMO program that it would not pay for health care for that child if she carried the child through to term.

So it is of concern that families who may potentially be bringing children with CF into the world may feel under some coercion, whether it's actually there or not, to reflect on society's response to the knowledge that CF may be present.

Mr. Allmand: I want to ask Mr. Black -

The Chair: Mr. Lemmens wants to respond to that, if you don't mind. Then you can carry on.

Mr. Allmand: I want to get to Mr. Black before the meeting ends.

The Chair: You will.

Mr. Lemmens.

Mr. Lemmens: I would simply add that one one of the very important aspects of controlling the use of genetic information by third parties is that people are being more and more hesitant to participate in very beneficial genetic research exactly because of their fear that they will be discriminated against in the future.

The insurance case you mentioned is in fact one of these cases where people participated in research, didn't really know what the research was all about, but then received a positive test result and were afterwards discriminated against on the basis of genetic information.

That's why I think control in the use of information is essential. Human rights legislation gives the message but mainly works post-factum, retroactively, when things have happened already. That's why we think there should be an advisory committee that looks into the issue of what types of tests should be allowed, and for what type of purposes.

Mr. Allmand: Mr. Black, I want to refer first to a case that has really upset me recently. It concerns a friend and a constituent who was covered under medicare, of course, in Canada, but had taken out additional insurance in case anything happened outside the country, in this case, the United States during the winter. You know, you pay so much a day and you get -

The man had a sudden illness. When he went to the insurance company, they said he didn't tell them about this, and they didn't cover him. His expenses come to $60,000, with top surgeons, and he's still in the hospital. You get into this whole question of did you or did you not tell everything to the insurance company? He says he did.

On these kinds of issues, whether all the information was revealed, does the insurance industry itself have - and you talked about how you have an ethical code - some types of internal tribunals or things where people can go on these kinds of issues, such as whether the testing was unfair, where the industry saves you the money of going to court by itself ruling as to whether it's ethical or in accordance with its rules of conduct?

Let's say some company was asking for tests your ethical code said they shouldn't ask for, and there was a question of interpretation. Does the industry try to settle those problems itself through an ethical tribunal or whatever? Some industries do.

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Mr. Black: We have an information service where consumers can call toll-free across the country to get information on insurance. A percentage of those calls involve situations such as you describe, where the individual may feel they are not being properly served by the company.

Our industry does not have a clout -

Mr. Allmand: Like a press council or something.

Mr. Black: Right. The consumer code of ethics, which I referred to, is a condition of membership in our association. At least in theory, if someone was found to be in serious violation of our code of ethics they could no longer remain a member of the Canadian Life and Health Insurance Association. That would not prevent them from continuing to do business in Canada. There is no requirement that an insurance company be a member of our association. So in the strict legal sense, that's a rather hollow stick to carry.

In practice, the companies do respond very well. The procedure would be that our information centre, when they obtain information of that nature, would go back to the company and go directly to the senior executive of the company to ensure that the case is thoroughly reviewed by the company.

If the company insists that they are following the law and following proper procedures, our association, as I say, does not have a mandate to challenge them. But if it did appear that they were in violation of the code of ethics, then our board of directors would look at that case. It hasn't happened, but that procedure is there.

Mr. Allmand: Are any companies in the -

The Chair: Warren, I wonder, do you mind if I hitch-hike onto that question before you proceed?

Mr. Allmand: Okay.

The Chair: With respect to the issue of voluntary codes and guidelines, there is the argument that they're not drawn up, first of all, in the public milieu, within the public arena. It's not an open forum. It is not well known or well publicized. It has no enforceability, as you have so rightly pointed out.

From what I've just gathered - and this is what I'd like to have clarified - is there a monitoring body, one that oversees here? If not, would you oppose some form of legislation that would be adopted within the code of practice, let's say, where the ministers of justice and industry are bringing down a code of ethical conduct or ethical practices?

Mr. Black: No, I don't think we would oppose that. We would hope to be party to the development of that.

I agree that the voluntary or industry-based codes are not developed in the public sphere, although in the privacy nature, I think in the recent past this has been done. In the development of the CSA model code, there was what I would call a ``multi-sectoral'' committee, involving the privacy commissions of both the federal and Ontario governments, involving Justice, Finance, Industry Canada -

The Chair: I think we're familiar with that, but it doesn't have any legislative mandate. That's first.

Mr. Black: Not yet, but -

The Chair: Second, is it not under provincial jurisdiction?

Mr. Black: In some cases, yes. This is part of the problem. The jurisdiction varies from one industry to another. Quebec is the only jurisdiction that has enacted privacy legislation. As I indicated, we cooperated fully. The legislation in many ways tracks the guidelines we'd had.

There are limits in voluntary guidelines, but for our industry, I feel the privacy guidelines we have had for 17 years now have served the public well in the absence of legislation. Without those guidelines, consumers would not have had any protection. So it's a question of the glass being half full or three-quarters full or half empty.

The Chair: One last question in this regard before I go back to Mr. Allmand. Is there a commonality in that guideline that one could call a national set of guidelines as opposed to12 provincial and territorial?

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Mr. Black: That was certainly our hope in working so hard on the CSA project with representatives of other sectors, that a template could be developed that would avoid even minor variations from one jurisdiction to another, because those variations create serious inefficiencies and serious complexities. Our feeling was that it was possible to reach consensus on a set of principles that could be applied nationally and that do track quite well, not only Canadian standards but also OECD standards.

The Chair: Thank you. Warren.

Mr. Allmand: Mr. Black, do you know whether any of the companies in your association require, or ever attempted to require, HIV tests for coverage?

Mr. Black: HIV tests are commonly required...and I think have enabled the system to maintain a high level of access to choice, on a voluntary basis, over the last ten years. Companies set certain thresholds depending on the amount of insurance being applied for or on the existing health history that may raise questions. The HIV testing then resolves those questions, yes.

Mr. Allmand: I see Dr. Somerville wants to answer, but I want to follow up first. Maybe she'll have more to answer when I've finished.

We now know that some people with HIV seem to go on living for a long time, and others don't. I read in the papers every day that these new drugs are helping to control the disease. Again, this seems a bit unfair to me - and I'm saying it mildly.

What about other companies who will take it if it's in your...? You've said if something was in the medical record...they may not request it, but they request everything that's in the medical record.

What I find happening now - and this is through talking with friends - is that when people are about to get married these days, the spouses are asking each other for HIV tests. Of course, that's a personal thing between them, but once they've had the tests and it goes into their medical record, it's there, and it's there for all the insurance companies.

You hear how some people with HIV have lived with it for fifteen or twenty years and they've never gotten seriously ill, but they know they have HIV. How do you distinguish? How do these companies distinguish?

Mr. Black: Unfortunately, there hasn't been any basis to distinguish. One of difficulties in dealing with the HIV-AIDS issue has been the lack of background, the lack of solid information. I think when the condition first emerged in the early 1980s there was a great lack of information as to how serious that additional risk was. For many years the evidence emerging was worse and worse, i.e, the condition was more and more serious in terms of limited lifespan. The evidence over the last few months has taken a dramatic turn, with indications that the outlook could well be very different from has been assumed over the last decade. Certainly our industry will be responding to that as that evidence accumulates.

In terms of separating out one individual from another, our medical advisers tell us they don't have a basis for distinguishing ahead of time which individuals are going to survive and which individuals are not. Our industry does have to operate on the basis of probabilities and overall experience within a group of people.

Mr. Allmand: I'd like to hear from Dr. Somerville. I have to go to the House to make a statement at two o'clock, so I hope I can hear from you before 1:55.

Prof. Somerville: I'd like to add two points to that. Some recent research on HIV has shown that some people may have genetic protection against the virus. This is interesting, because this would be a reverse case. Doing the genetic tests might in fact tell you the person would be protected. But that wasn't really the main issue I wanted to raise here.

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In this area we have to make sure we don't have a knee-jerk response - for instance, HIV-positive: no insurance. I would bring it to your attention that one insurance company in South Africa has recently issued a policy for people who are HIV-positive.

Of course, a lot of actuarial and other work has to go into assessing that. There are also some very fundamental human rights issues about who constitutes the group that would be insured in that way.

I would bring it to the committee's attention that one option is to say don't do the test at all. Another option is to say, well, if we allow the test, we will not allow it to be used in certain ways - for instance, to deny insurance completely. So there are different modifications that could be made.

The point about the protease inhibitors, which is what Mr. Allmand just raised, is extremely important. I'm not an expert on how long the lifespan has been extended, but I was recently at a meeting where it was said that the average lifespan now has gone from 12 years to 20 years. This is a massive increase in life expectancy for people who are infected with HIV, which of course makes a lot of difference to the insurance industry.

Mr. Black: It makes a lot of difference in various ways. One of the practices the industry has developed with HIV-AIDS is to advance part of the death claim proceeds to persons who are insured and who are suffering a terminal illness. Now, with these new therapies coming on stream, and new information, that may not be as easy to do as it has been in the past.

Prof. Somerville: To add to that, some people are finding themselves in very difficult circumstances. They took these benefits and spent all the money, thinking they probably had one or two years left to live. Now they're finding that probably they have a lot longer to live.

The Chair: In poverty.

Prof. Somerville: Yes.

Mr. Black: It's ironic. Change creates problems, even positive change.

The Chair: I know you have to go, Mr. Allmand. Is there something you want to add, or another question before you leave?

Mr. Allmand: This is such an interesting field. It's too bad that we had the votes and that more of our colleagues -

The Chair: I know one was chairing another committee; another was doing a standing order and had to go and write it; a third was chairing another committee as well; and a few other things happened.

Mr. Allmand: I regret that I have to leave right now.

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

Mr. Black, could you just tell us a little bit about the Medical Insurance Bureau, or the MIB, in the United States? We understand there is a warehousing of millions of pieces of Canadian and American medical information. Who has access to that information? Is there any way in which it could be controlled?

I would like to know who you, as Canadian companies, could be called upon to share your information with as an obligation in the health-serving system or in the banking system. Who can ask you for this information? My employer? So it's the American MIB and the Canadian insurance board. Who can ask?

Mr. Black: First of all, with regard to the Medical Information Bureau, it is an industry body. It is a not-for-profit body created by the insurance industry. Most insurance companies in the United States and Canada are members of the MIB, and only members have access to the information on file.

The information on file in the Medical Information Bureau is very limited. There is absolutely no record whatsoever unless someone has been underwritten for insurance and the process has established that there is some information that has affected that individual's insurability - that is, if the information on that procedure establishes that the individual is not eligible for insurance, which represents less than 2% of the applicants for insurance, or if the individual is insurable but only at an extra rate, which represents another 2% of applicants.

So it's only on that 3% to 4% of applicants that a record potentially could be filed with the Medical Information Bureau. The record that is filed is a very brief one. It is a coded series of numbers that, first of all, ensures that the individual is properly identified - essentially name and date of birth - so that if there are several people with the name Charlie Black, that information would not be confused between the different people. It's essentially name, address and date of birth, and then an indication that there has been an experience where there was information of a medical nature that affected this individual's insurability.

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A member can access the MIB only if they have an application for insurance, so that someone could not go on a wild goose chase to obtain information on a whole range of people. There are regular audits to check that any request to the bureau is backed up by a current application for insurance.

The information is disclosed only to the medical director of the company. It is not an on-line system. The request is made, the connection is broken, and then the MIB sends the information back, if there is any information on file, to the medical director of the company. That information is retained by the company on a classified basis. The member company cannot act on that information alone. It is simply a trigger to check that they indeed have been given the full information, that the applicant is complying with the disclosure requirements of the law. Essentially it's a fraud control agency to protect against someone deciding to conceal information from a second or third insurance company they are applying to.

It is an international body covering the United States and Canada. They do have an office in Toronto, and provide access to individuals as to what information is on file, whether there is a file, and if so, what that file contains. It has operated for many years essentially without problems. It is a well-protected system, very concerned about protecting the confidentiality of information.

In terms of the Canadian scene -

The Chair: Hold on, before you go to the Canadian scene I see Mr. Lemmens would like to ask you a question.

Mr. Lemmens: I agree with you that often people exaggerate the type of information that is gathered by the Medical Information Bureau, and I am sure the industry has strict privacy guidelines on it. But at the same time, when you apply for life insurance you do not have a choice to exchange or to allow the Medical Information Bureau to obtain this information. You sign a clause giving access to your medical file, and I think there might be some concern there in the future with the possibility that genetic information and other health information could become part of this file. I was wondering -

The Chair: See your own files is a good question.

Mr. Lemmens: In Europe, for example, if the European recommendations are followed this type of information gathering will become impossible. Do you think the insurance industry would really collapse if they didn't have this system?

Mr. Black: There is a really serious concern about fraud within the insurance system, including auto insurance, homeowners insurance, and liability insurance. Probably our industry, in the life and health side, has less current concern with fraud than many of our colleagues in the general insurance side of the industry, but I think if there were not some controls such as the Medical Information Bureau, it would be an invitation to a small number of citizens to commit fraud.

As I indicated earlier, insurance companies are strictly the intermediaries. If there is fraud, the people who suffer are the other people who are insured, not the insurance company. The companies essentially operate this system as intermediaries, as trustees. Many of them are cooperative in nature. They do not have any shareholders. So it is a little different type of system. I think many people see it as being the company that would suffer in this instance. It's not. It's the other individuals. Would the industry collapse? I suspect we would find ways to continue. It is a flexible industry, but I think the value delivered to Canadians would be lessened.

The Chair: Okay. Just as part of that story, could I see my own file?

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Mr. Black: Yes, by all means.

Every applicant for insurance - and this would generally be only applicants for individual insurance - if you're applying for insurance through your employer, your union, your bank association or whatever, chances are that information of a medical nature would not be required, and there would be no possibility of a file being created with the MIB. If there is the possibility, then every individual applying is provided with a description of the MIB, with a consent form that they either agree to or do not. If they do not, unfortunately that means they are withdrawing their insurance application, because it's part of the system, part of the requirement for full disclosure.

Anyway, that notification is given, and includes the name, address, and I believe the telephone number where an individual can apply to get access to their file. They're usually disappointed that it's so brief.

Prof. Somerville: Could I just ask a question on that? If somebody was applying for group insurance through say a union or an employer, would there be a check on that person on MIB, and could they be rejected through that?

Mr. Black: Typically not. Group insurance is a good example. As I indicated earlier, there is a lot of choice in the system, and consumers more and more are demanding choice in the group insurance environment as well. Traditional group insurance has been the same formula-type coverage for every individual: two-times-salary life insurance, for example. Current developments are that many organizations want to offer their employees more choice, and where choice enters into the system, it's more likely that there would be questions asked and a possibility that an MIB file would result. It's not common, but group and individual are not totally separate. It's a spectrum, and there are types of insurance in between.

Prof. Somerville: So you wouldn't routinely screen everybody in a group to see if you had a -

Mr. Black: No, no. It would be a fraction of 1%, if that.

The Chair: And on the second question I asked you?

Mr. Black: On the second question, the individual insurance, the application generally states that information obtained in conjunction with the application will only be disclosed where required by law and on the consent of the individual.

That is causing our industry some problem with regard to HIV-AIDS, because as we understand the law, the insurance company is not required to disclose HIV information to public health authorities, and there is serious concern among the medical community that failure to disclose information could jeopardize the health of other individuals. Certainly the objective is to make that information - or any information that could be important to the individual's health - available to the individual and to the personal physician.

Some changes have been made, and more are being made, to essentially get up-front consent to get a name of an attending physician and the facility, so that the information can be passed on to those who can make use of the information for health purposes. But generally speaking, as I say, it's limited to the consent of the individual or where it is required by law.

The group insurance area where the employer is the plan sponsor is among the more difficult, because as your committee in October met at the disability and work conference and in the course of that conference undoubtedly heard, there was a lot of emphasis on rehabilitating a disabled worker, which is very positive. To do that, however, requires that some information be shared with an employer to make sure that the job can be properly designed to accommodate any limitations that may exist. It does not mean that full information be disclosed.

The Chair: Excuse me, Mr. Black. That information has to come from the insurance company?

Mr. Black: With the consent of the individual. But certainly what we are experiencing is that many employers, many benefit consultants, exert a considerable amount of pressure to access information, particularly in situations.... This is another aspect of the voluntary codes we touched on earlier. Where one industry such as the insurance industry has a code, and the employer or the union may not be subject to such a code, there can be a conflict there. In general, our companies are holding the line, but it's an area we are reinforcing.

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The Chair: I'm just curious. A couple of cases, like the one Warren raised, and there's another case I know of.... Are people really well informed enough? Do they thoroughly understand the implications when they sign that form and say they have filled it out to the best of their knowledge?

I mean, those questions and how that information is translated become very key. I just wonder, what is the transparency, what is the openness, what is the level of comprehension and understanding? Has that bothered you, or created a problem in any way?

If anyone else up there wants to add to this, please feel free. I'm not attacking you, Mr. Black; it's something we have to understand.

Mr. Black: It's an area of major concern. Unfortunately, even insurance can be complicated at times. Certainly full disclosure is a two-way street. It is required that the company disclose to the individual what's happening, just as much as it's required that the individual disclose relevant information to the company that is considering a claim or an application for insurance.

The out-of-Canada area is the area where most individual Canadians come in contact with private health insurance. Most supplemental health insurance is through the work environment, through the group insurance mechanism, and generally no questions are asked there.

In 1991, when Ontario cut back on its coverage under the Ontario Health Insurance Plan, our association put a major effort into a communications campaign, in providing a bulletin that tries to address this issue. It's an area our information centre deals with substantially. Unfortunately, not all individuals take advantage of that, or read the information given to them. But I think it's fair to say that major efforts are made to make sure this information is available.

The Chair: We're just having a little discussion here. As Canadians, we're supposed to have freedom of travel, freedom of access, and level access across this country. I just wondered, if I buy my insurance program in Lethbridge, Alberta, let's say, and I'm going to come into Quebec or New Brunswick, am I going to have any problems if I get sick? Am I covered? What happens? Is it clear?

I see you shaking your head, Mrs. Morrison. You go ahead, and then I know Mr. Lemmens has a question.

Ms Morrison: Well, I think this type of issue is going to become more and more prevalent in health care. We've seen this topic come up with respect to cystic fibrosis in the arena of public support for life-sustaining drugs and medication.

I'm aware of one case just at the moment - I don't know if I should name the province - where a province hasn't the intent to pay fully for those life-sustaining drugs and medications for an individual who is a former resident of that province who has now returned, having been out of province for a while. They want to claim co-payment. So I think this.... I mean, this is an issue -

The Chair: Do they believe it to be an environmental problem, a genetic problem, or what?

Ms Morrison: No, they just believe that this is a situation of a new applicant with CF for public support, and this person is not a provincial resident any longer, having left the province for a period of time and come back. In other provinces, on the other hand, those drugs would be paid for fully, and they would be normally paid in the province for other residents who have CF.

The Chair: Someone else? Yes, Mr. Lemmens.

Mr. Lemmens: I simply want to add to your question about using information, or the obligation.... Do people really know what they have to tell? The case you mentioned, the Audet case, involved a person who participated in a research project and was involved in this research project. They simply suggested to him at that time that they were going to search for the gene for the miotonic dystrophy of Steinert.

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This person agreed to participate in research, but got the positive test results that meant he was carrying the gene. At the same time, he was one of these persons who was not really suffering from the disease; there were only minor expressions. The question was asked when he applied for insurance: ``Do you have a physical or mental anomaly?'' which is a very vague question.

The Chair: What does the word mean?

Mr. Lemmens: What does the word mean. As an insurance applicant you have an obligation under Canadian law, or provincial laws, of utmost good faith to declare everything that could be relevant for an insurer in order to underwrite you, to determine your risk.

When the person later died in a car accident, they went into his medical files and discovered this positive test result and said he violated the obligation of utmost good faith - that in fact he fraudulently declared that he was not at risk. I'm not going to make a -

The Chair: But the judge upheld that. It went to the court and the judge upheld that decision.

Mr. Lemmens: That's it. The judge said that indeed the person was lying and therefore annulled the contract.

There are questions there. Did this person really understand the question: do you have an anomaly? What is an anomaly, and was he really sick?

Genetics raises very interesting questions about the nature of disease, which we will have to deal with. I think the general public is not always aware of what risk means. We might really have to look into this, and regulate how we can use genetic information and to what extent, and also to avoid the collapse of the insurance industry under a phenomenon called adverse selection. This is where people who know they are at risk and who know that they will die in one or two years secretly hide information, apply for insurance, and get full pay-out.

There is this kind of balance that we have to seek between what type of information is really essential for underwriting purposes and how we maintain a basic equity in society where people are not discriminated against on the basis of susceptibility.

The Chair: I guess that's part of your four questions, isn't it, Dr. Somerville?

Mr. Oscapella, you have been quite quiet for the last little while. Do you wish to add anything before I call this meeting, which has already been delayed and for which you've been most gracious? And you're probably all very hungry.

Mr. Oscapella: I'm sure there are many things I could say, but at this time I think most of my comments are on the record, so I'll leave it at that. Thank you.

The Chair: Is there anything you'd like to modify as a result of what you heard today?

Mr. Oscapella: No. I think some of the points.... I'm quite comfortable with many of the things that have been said today.

The Chair: They've been reinforced, have they?

Mr. Oscapella: Yes.

The Chair: Thank you very much. Ms Morrison.

Ms Morrison: I'm just really glad that you're doing this work, and thank you for the opportunity to contribute.

The Chair: Thank you. Dr. Somerville.

Prof. Somerville: No, I think I've said enough.

The Chair: You've certainly enlightened us on our.... I don't know whether the travel shot us to the moon or where else, but it certainly is quite fascinating.

I thank you all very much. The meeting is terminated.

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