[Recorded by Electronic Apparatus]

Tuesday, June 4, 1996

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[English]

The Chair: I see a quorum, so I'll call this meeting of the House of Commons Standing Committee on Human Rights and the Status of Persons with Disabilities to order.

We are holding a series of round table discussions on both current and potential impacts of new technologies upon Canadian human rights, and we're focusing on two main categories of the wide array of technologies that are regularly affecting Canadians' everyday lives. What are their challenges, what are their opportunities, and what are the dilemmas for human rights?

Today is the second of the round tables, and we will build on the information we gathered when we had the discussion on new information and communications technologies, which certainly gave us a very interesting perspective on the world of work and the changes that are inherent in there and the place, particularly, of the disabled in that world of work.

Our interest is in assessing how these new technologies affect individuals' privacy, choices, and quality of life. Do they threaten to diminish or do they promise to enhance human rights? What are the issues, really?

We're very fortunate today to have joining us, on the biomedical side, some outstanding thinkers and actors in this field. I'd like you to know that we plan to relate the findings to the ability of our existing policy and regulatory and legislative frameworks to adequately safeguard and promote the rights that are affected by these new technologies and whether, frankly, any changes to these frameworks are best addressed within the human rights context and what changes might be considered to ensure more appropriate protection.

We have with us today, and I am pleased to introduce to you,

[Translation]

first, Ms. Bartha Knoppers. Ms. Knoppers, good afternoon and welcome to the committee.

Throughout her academic career, Dr. Knoppers has dealt extensively with ethical, legal and social issues in the context of public policy.

She's a professor at the Faculté de droit, Université de Montréal, and senior researcher at the Centre de recherche en droit public.

Admitted to the Quebec Bar in 1985, she is legal counsel to the firm of McMaster Meighen.

Dr. Knoppers is currently chair of the International Ethics Committee of the HUGO Project and a member of the International Bioethics Committee of UNESCO.

She is also a member of the central management committee of the Genome Analysis and Technology Program, where she chairs the Medical, Ethics, Law and Social Committee, and acts as a consultant to Industry Canada.

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Last year, she became chair of the social issues committee of the American Society for Human Genetics. She served as a commissioner for the royal commission on new reproductive technologies, as well as having been an expert adviser to committees of the World Health Organization in Geneva. Welcome, Dr. Knoppers. You obtained your Phd from the Sorbonne, isn't that right?

[English]

Secondly, I would like you to meet Dr. Gregor Wolbring, who got his PhD in Germany from the Max Planck Institute of Biophysics while working with the Nobel laureate Hartmut Michel. He is now doing postgraduate studies and doctoral work in the Department of Medical Biochemistry at the University of Calgary, where he's also a guest lecturer on rehabilitation studies related to disability issues.

Dr. Wolbring is a spokesperson for the Canadian Disability Rights Council on reproductive technologies and was one of the representatives of the council on the issue of euthanasia in the Latimer case. He is also an adviser to several groups around the world. Amongst them are the Disabled Women's Network, which we call DAWN here, on the subject of genetics; the Austrian Independent Living Centres; and the Australian Queensland Advocacy Inc.

It is with great pleasure that we welcome you, Dr. Wolbring.

Thirdly, we have with us Dr. Anne Summers, who is a clinical geneticist and has been working in the genetics program of the North York General Hospital for the past seven years. She received her medical training at the University of Toronto and pediatric and genetic training at Toronto's Hospital for Sick Children.

Prenatal diagnosis and predictive testing for adult-onset disorders are two areas of particular interest to Dr. Summers. In these two areas, ethical issues are constantly raised, which we can all understand. That led to her third major area of interest, the interface between ethics and genetics.

Dr. Summers has served as a member and chair of the Ontario Medical Association's committee on bioethics and is incoming chair of the North York General Hospital's ethics committee. These two committees have considered issues such as assisted death, advance directives, genetic testing for adult-onset disorders, the ethics of resource allocation and prenatal screening.

We have next, not in order of any precedence, but perhaps it was language that dictated what I was going to do, Dr. Abby Lippman, who is a professor and acting co-chairman in the Department of Epidemiology and Biostatistics at McGill University. In addition, she has cross-appointments in the Departments of Human Genetics and Social Studies of Medicine at McGill and

[Translation]

at the Department of Social and Preventive Medicine of the University of Montreal.

[English]

Dr. Lippman is also co-chairman of the human genetics committee of the Council for Responsible Genetics, which is based in the United States.

Her current research centres mainly on feminist studies of applied genetic technologies. She is also the principal investigator in a qualitative, participatory research study on communications amongst women with breast cancer, funded by the National Cancer Institute of Canada. She is a graduate of McGill University.

[Translation]

We also have with us Dr. Marcel Mélançon. Dr. Mélançon is a professor and researcher associated with the Université du Québec à Chicoutimi and the Collège de Chicoutimi which I had the pleasure of visiting on a number of occasions. His expertise resides in bioethics, particularly in the area of human genetics. He directs an inter-institutional and multidisciplinary research team, involving five Quebec universities and colleges, and experts from the fields of genetics, law and sociology.

Their research involves legal, social and ethical questions related to biomedical technology, especially genetic technology, such as issues related to the computerization of individuals' genetic data and its potential effects in terms of insurance, employment, discrimination and eugenics.

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As well as being director of the Groupe de recherche en génétique et éthique du Québec, Dr. Mélançon is co-director of l'unité de génétique of the Réseau de recherche en éthique clinique chez l'humain and director of the Groupe de bioéthique of the Collège de Chicoutimi. He received his Phd in Fribourg, Switzerland.

[English]

Dr. Jerry Bickenbach is a professor in the Department of Philosophy and Law at Queen's University and a member of the Ontario bar. He is an expert in the area of physical disability and social policy, having written and taught, for example, about biomedical ethics, government policy and persons with disabilities, AIDS as a disability, and equality rights and physical disability.

His diverse research and consultation activities have included a study of the participation of persons with disabilities in policy making in Canada, work for the Law Reform Commission of Canada on criminal procedures, and acting as an adviser to the Roeher Institute and to the secretariat of the Secretary of State for Disabled Persons. He is serving as a member of the North American Collaboration Centre for the Revision of the International Classification of Impairments, Disabilities and Handicaps; and on the board of the Social Planning Council of Kingston and District. He has served on Queen's University's accessibility committee and the ethics committee of the Faculty of Law. He is a graduate of the University of Alberta.

I would appreciate if Dr. Knoppers would start. Perhaps you could outline what you see as the problems and some of the resolutions and changes qualitatively affecting our lives, positively or negatively as the case may be.

Ms Knoppers: Thank you, Madam Chair. I have two goals. One is to make you aware of some of the international and national initiatives around new technologies and the problem of potential discrimination, and the second is to address a few of the issues coming up in round table three, which happens to be part of a research project currently ongoing.

I think it's important when we're dealing with awareness of new technologies, be they information technologies, reproductive technologies or genetic testing technologies, that we realize and understand and revisit the past - not only historically in what has happened with respect to the use, misuse or abuse of new technologies, but also in the formulation of different approaches.

If we look at how policy and legislation have developed in the past, it has usually been in reaction to scientific fact. We just have to look at organ transplantation or even reproductive technologies to see, taking Canada as an example - maybe not other countries - that we are woefully behind and often unprepared. Such scientific advances are presented as facts and then we have to adjust and come up with some policy.

In the area of human genetics there's an attempt being made internationally, regionally and nationally to be not reactive but proactive, prescriptive and principled. I'll give you a few examples.

You probably know that UNESCO's ethics committee is currently developing the International Declaration on the Protection of the Human Genome and Human Rights. Similarly, at the European level the Council of Europe is drafting a draft convention on bioethics. HUGO, the Human Genome Organization, adopted on March 21 in Heidelberg a principled statement on genomic research. This has to do with population testing and being sensitive to different cultural issues and different concepts of self, genetics, DNA and so on.

Finally, here in Canada our own MELSI, the Medical Ethics, Law and Social Issues committee of the Canadian human genome program, commissioned a report last year on one of the issues most identified as currently creating fear if not actual problems in Canada, and that is insurance. As we learn more and discover more not only about the classical single gene disorders, but about the fact that there are genetic factors in most common disorders, the whole issue of insurance becomes a major problem.

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The MELSI task force has asked industry to form a special committee to study a Canadian approach to this issue, seeing as we live in a country that has universal health care insurance and so are different from our counterparts to the south in terms of what we already have as a social security or health care infrastructure. It's one we don't want to lose, but it's one where life insurance, disability insurance and other forms of insurance are equally important.

Those are the initiatives that are currently ongoing to try, before these human genetic technologies become fully integrated into our society, to prepare, study and elaborate on the norms that will guide us a country, as a society and as a member of the international community.

In the research project currently ongoing in my centre, we are looking at normativity: how do norms emerge? We are looking with other researchers at what happened with nuclear energy, what happened with radio and television communication and so on.

In the area of human genetics, we're looking to see what instruments already exist. Can we rely on the adequacy of human rights legislation as currently found at the federal and provincial levels in Canada? Do we need to add at the end of the long list of prohibited forms of discrimination something like ``genetic characteristics'', after handicap, sex, race and so on?

Or would such addition serve to further stigmatize what is really the normal human condition, i.e., disease in some sort of state, of which we are all carriers of certain deleterious genes? Would the addition hamper the further integration and normalization, if you like, of disease and disability? In other words, would it be an approach that would not serve the respect of certain ethical and legal principles?

Or should we add to human rights legislation that perception be included; in other words, not add a category of a prohibited form of discrimination, but add that discrimination in and of itself includes perception and in that way expand the categories of protection that we offer?

Some countries have not gone this way. They have gone the way of what I call genetic-specific legislation. They are going sector by sector, looking at their employment law, their insurance law and their data protection laws to see how to control, actually or in the future, the integration of genetic information.

There's also a danger with genetic-specific legislation, because you can have contradictions, and in a country such as ours, with divided and multi-jurisdictions, you can have major problems with differences between provinces and so on.

These are the two approaches currently being studied.

Finally, if there's any word of advice at this point in time for your committee, probably the most immediate area of concern that would need to be addressed is the current protection, or lack thereof, offered to medical records. Rather than focusing on a technology per se, focus on the area where most insurers, most employers and most other third parties would, irrespective of any human rights legislation under which there is some limited legitimate discrimination, so to speak, obtain this information anyway to the disadvantage of persons who are either carriers, asymptomatic or affected.

Thank you.

The Chair: Thank you very much. You've certainly set the parameters.

If I want to know something about the copyright of my genes or my genetic inheritance, do I have those personal rights and nobody else?

Ms Knoppers: We have a study on that too, at the Canadian level. It's on the whole notion of property and how to characterize both the material and the information. Should it be characterized as persons or as property, or should we create a new understanding of that?

The Chair: Thank you very much.

[Translation]

Each person will have about five minutes.

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[English]

I'd like to ask Dr. Gregor Wolbring to present next, please.

Dr. Gregor Wolbring (Department of Medical Biochemistry, University of Calgary): Good day, Madam Chair.

I think first we have to understand who are the major contributors toward genetic research and who are the people behind pro-genetic research, which means who gives the money for it. Traditionally, the private sector is the major contributor towards genetic research. If they're doing this, it means they need some return on the money sooner or later.

In the U.S. most of the biotech companies are sponsored to a great extent by the insurance companies. The U.S. is still more fragile and vulnerable to misuse by insurance companies than the Canadians are, but in the U.S. genetic research is pushed and we are more just following.

To see things from a disability point of view, we have to see how the enhancement of genetic research changed the perception of disabled people. For my first five minutes I will talk about two developments we have.

We have the so-called medicalization of disability, which means that in the minds of many people disability equals disease. This is one thing that we, and certainly I, totally disagree with. Some diseases can be disabling, but for me disability is an expression of a power imbalance between a minority and the majority, whether it's a woman in a male-dominated society or a Muslim in a Christian-dominated society or a Christian in a Muslim-dominated society.

The second thing that is happening is that we're having a genetification of medicine. More and more, through the media and PR, the public gets a perception that everything is in our genes. We are not responsible any more. There are no environmental factors any more; it's all in our genes.

The best example is the breast cancer gene. There was a lot in the media, but the breast cancer gene itself is only responsible for 2% to 5% of breast cancer. Between 1987 and 1991, breast cancer in the U.S. increased by 10%. Obviously the solution does not lie in looking at the genetic components of breast cancer. It lies much more in looking at environmental factors and other factors of breast cancer.

At the moment the media totally overemphasizes genes and gene therapy as a magic bullet. We're getting perceptions that are going quite far away from reality and we're starting to increase certain expectations in the public which are for us very dangerous.

The other thing you can see is that inherently the process to get acceptance of a technology normally starts with a small group where you have public support, like developing genetic testing for Tay-Sachs, and then moves on to a different group like Down's syndrome. This kind of process is inherently eugenics because you are singling out a group for special treatment.

One of the recommendations of the royal commission report was not to use prenatal testing for sex selection with the following option of abortion because it's against the principle of human life and dignity and against Canadian values. But of course the same report says that you can use prenatal testing for the detection of disability. Am I different because I have the label of a disability? Am I not part of the same principle of human life and dignity? It simply shows that we are measuring in two categories.

It also shows that when you look at where the money goes for genetic research, it doesn't stay with the so-called traditional genetic diseases like Huntington's, cystic fibrosis, and so on. It goes to areas where we are having genetic research into genes and alcoholism, manic depression, schizophrenia, genes and violent behaviour, genes and sexual orientation, etc. All of this is on research.

For example, where would we put the Xq28, the preliminary finding of a gay gene? Would it be on the side of sex selection and therefore shouldn't be allowed, or on the side of disability selection and therefore should be allowed?

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We have here intrinsic technology that is, by its way, simply eugenics. You simply can't afford it, because you don't have everything at the same time. The only way you can prevent the eugenic component in some way is if you only allow testing for conditions that are treatable.

For Down's syndrome, one of the conditions traditionally tested for detection, there is no cure. There is not even much research in trying to cure. The only reason to do testing for Down's syndrome, and now even at the pre-implantation diagnostic level, is to avoid Down's syndrome.

With all of these kinds of technologies, it's like a catch-22. It's like a down-spiral. It increases the negative perception of disabled people, because without a negative perception, you don't increase the demand for the technologies. If everyone thought there was nothing wrong with someone having Down's syndrome, there wouldn't be a need for the technology. You need to generate a negative perception of a group in order to increase the demand for the technology.

Later on, because my five minutes are more or less over, I would like to give you some sound bytes on statements of people to show you how the advancement of genetic testing has changed laws already in other countries, for example.

Thanks.

The Chair: Thank you very much.

I can tell you I used a little bit of your story about the fact that you go to schools and speak to children in grade 5 and grade 6. Children, who are very frank and open, ask questions when they see you in a wheelchair, a man without legs. They ask you how you manage, what you do, how you work and where you work. You finally answer all of the questions with a great deal of frankness, as is the right of children to ask and you to respond. Then you ask them to guess what you do, and nobody can guess.

Dr. Wolbring: Yes. Because they are already educated by the media, parents and so on with very negative stereotyping, of course they have a totally different picture of what disabled people are able to do and what I am able to do.

Of course I'm a very atypical disabled person. Most of the disabled are not as fortunate as I was, because I had parents who fought for my rights before I could start doing that. A lot of disabled persons are not as fortunate. You can see it within even the thalidomide groups, depending on whether the parents could cope better with the negative perception of society.

So I try to talk to kids, because they're very susceptible and more open-minded. I talk to them and show them the difference between what they think of me and what the reality is. It's quite a discrepancy.

It works fine.

The Chair: Thank you.

Dr. Summers, please.

Dr. Anne Summers (Former Chair, Committee on Bioethics, Ontario Medical Association): I'm going to take a much smaller view of this question than our previous two speakers have.

As a physician very interested in physician-patient relationships, I see the whole genetic revolution, if you would like to call it that, from a very small view, from the view of the physician and his or her patient. Although I am looking at it from a different point of view, in fact I probably come up with very similar conclusions to those of our previous two speakers.

People are well aware, whether we like it or not, that there is a geneticization of medicine, a genetic revolution, and this is just the beginning. There's an explosion of genetic technology. We in the field of genetics are handling it so far, but this is going to be way beyond our abilities very quickly.

I would like to tell you about the things we have to do in terms of counselling of patients so you understand what goes on.

In terms of the future, this may have wonderful consequences. People may be able to take responsibility for their own health, decide what their risk factors are, change their lifestyles and take a medication. We may really be able to change their future.

But in the meantime we're in a position where we're able to test for a great number of disorders, and patients want to be tested, but in very few situations can we actually treat. We may be able to do some prevention, but we really don't have a whole lot of treatment. So we're in a position where we can give people information about themselves but not really do very much about it.

We have to be very careful in this kind of situation. We have to learn from the situation and carry on in the future with this knowledge.

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One of the diseases that I deal with quite regularly is Huntington's disease. We run a Huntington clinic at our hospital. This is a neurodegenerative disorder. Somebody who has the gene for Huntington's disease will develop this disorder at some point in their life, usually in their thirties or forties but it may be at any time.

As the disease progresses, they will lose control of voluntary movement or they'll develop something called ``chorea'', where they have a lot of large movements of their body. They almost invariably have behavioural changes, which makes them very difficult for their families and friends to live with, and often they have a progressive dementia as well. So this is a very severe disorder.

We now have very accurate testing for this disorder. We can take anybody's blood and tell them whether or not they have Huntington's disease. Now, we don't do that; we take blood from people who have a family history, because otherwise it would be a waste of resources and a lot of anxiety created for nothing.

In order to do this testing, we have to prepare our patients. We can't just take someone's blood and send it to the nearest lab, get an answer back, give them a call, and say, ``You have the Huntington gene. Too bad''. We have to prepare them for this and to make sure they understand it.

We do this by educating them basically on a one-to-one basis. We talk to them about the genetics, the science of this. We have to talk to them about the psychology of this. This is not just getting a scientific answer. This is an answer that may change your whole life.

The Chair: Are you talking about the family, the newborn child, or the -

Dr. Summers: The adults. We try not to test children for genetic disorders unless there is some kind of treatment or prevention.

We have to teach them about the disorder. We have to make sure they understand the implications of getting these results, and we have to be prepared to support them not only through the results but also through the long term. We can't just say, ``This is your result. Goodbye''. We have to have somebody who is going to follow them, who can help them deal with their disease when it happens and deal with the waiting for the disease. It's almost as if you know something's going to happen but you don't know when it's going to happen. For many people it's better for them to know, but for many others it's not better for them to know.

One of the major things we have to be very careful about is coercion. Many people come in and say, ``My daughter and my son would like me to be tested. They want to have children. I don't really want to, but I think it will help them.'' That person is the one who has to live with that answer. The son or the daughter will have to live with it, but not with the same immediacy as the person who is being tested. So we have to make sure they really understand what they're getting into and that nobody's forcing them to do it.

Even more sinister are the people who come in and say, ``I tried to get an insurance policy, but the company said I can't have one unless I am tested and I give them the answer.'' This is getting back to Ms Knoppers' point. I think this is something that this committee should strongly consider.

That's the type of preparation we have to do. We have to provide long-term follow-up. That means that in terms of managing these patients the actual DNA testing is the simplest part. It's also probably the cheapest part.

So we're going to end up by being able to test for genes such as the breast cancer gene, which in fact we can already do to some degree, other cancer genes, heart disease genes, diabetes genes - you name it. All of us will have something that will cause some problem in our lives.

We have to have a way of preparing people for this, which cannot be done on a one-to-one basis in the long term.

This is one of my two major points here. I feel that our current society is totally unprepared for this. Speaking to my own patients, their lack of knowledge about genetics in general and about their health in general and their naivety about the world around them, who can get access to these results and how they can use them, are quite appalling.

This is something that we, as a country, have to look at and we have to approach from a very early age - not just saying that you should be tested for this or that or the other disease, but giving people the wherewithal to make decisions about whether they want testing or not and making sure that it is okay not to be tested, as well as to be tested.

Many people feel the technological imperative: the test is there; therefore I should have it. That should not be the way. It should be a matter of freedom of choice.

For Huntington's disease, we thought that something like 80% of people would come forward and have this test as soon as it was available. In fact, it turned out in the first run to be about 15%. It's now probably up to about 25%. It just shows that the vast majority of people do not wish to be tested, and we should not be setting up a situation where this is the way it should be.

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The Chair: Dr. Summers, I would just like some clarification. Did you say that insurance companies asked for or called for such information?

Dr. Summers: Yes, in certain situations. I've had a number of patients come through with business insurance and those kinds of things.

In reviewing what I think are the issues that need to be considered on a national basis, the first is informed choice. Any of this testing, be it prenatal testing, any childhood testing, or adult-onset disorder testing, should all be on the basis of informed choice, not informed consent. This should be information on behalf of the person requesting testing. This is not to cover the physician or the health care provider; this is for the patient.

Second, we should be very careful about coercion. It can be benign coercion. A physician may feel it may help the patient. A family member may feel it may help the family. Or it may be more sinister. In the United States it may be a health care organization or an employer, while in Canada it may be an insurance company. I think we have to be very careful about setting up a situation in which this can happen for a patient.

The third thing, which is something Ms Knoppers mentioned, is confidentiality. This is something we are very careful about. We cannot guarantee absolute confidentiality because there are ways that various persons can have access to private medical information, but we do inform our patients how those things can happen so at least they're aware of how their confidentiality can be breached. Again, this should be something everybody is aware of. We will all have this private information that we may not want others to know.

We should make sure there is equal access to all who wish for access. This is not an elitist situation in which the most informed or the most educated people get this, but all are to be educated for this. We should absolutely allow people to refuse testing and make sure this is as acceptable as having testing.

We should not discriminate against those who test positive for a particular disorder or for those who choose not to be tested. For each new test that comes along, we should consider both the harms and benefits of both having and not having the test.

In terms of policies that I would like to see considered, I would like a person's genetic or family history to be private. I don't know how you do that - I'm not a lawyer - but I think this is a very important thing. It's certainly a major cause of coercion, and shouldn't be part of medicine.

I think education has to be a major thrust in this country in the future. I'm not sure how to go about that, but I think it has to happen at every level. We have all kinds of media available now, such as the Internet and that kind of thing, and we have to make use of that.

Finally, I would very much like to have - and this is maybe beyond possibility - a delineation of physician responsibility to his or her patients, to the patient's family, and to society in general.

An example that comes to mind is if somebody has Huntington's disease and they are a policeman. They carry a gun and drive a car. They may be in high-speed chases. When do you breach their confidentiality and let their boss know, or whomever? When does society take precedence? That's obviously when there is risk, but it's very hard to judge when that risk may happen.

There are other situations in which a patient's family may benefit from knowing information but the patient refuses to disclose that. Where do we stand in that kind of situation? There may be answers to that already, but I've yet to find them.

Thank you.

The Chair: Thank you very much, Dr. Summers. It sounds like a very wide field.

Dr. Mélançon,

[Translation]

please.

Mr. Marcel Mélançon (Director, Groupe en génétique et éthique du Québec (Canada)): I would like to briefly underline four points, some of which will probably overlap with the ones we've just discussed.

First of all, in biomedicine, there is a new sector that could make certain people or categories of people vulnerable, and that's the field of genetics.

We absolutely do need human genetics and I believe that the HUGO project, the Human Genome Organization, is very useful to advance our knowledge about our genetic heritage and develop biotechnologies to intervene in health care in order to alleviate human suffering.

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To some extent, this human genome project opens the era of genodiagnostics, that is the possibility of conducting genetic tests to understand increasingly delicate and common diseases.

Secondly, genetics has one unknown aspect compared to other sectors of medicine. Genetics provides information on related third parties, the nuclear family and the extended family, so that if you have a disease in a family, be it recessive like cystic fibrosis or dominant like Huntington's disease, in a variable proportion, all other members of the family are at risk. We have to ensure that this information on third parties remains protected within reasonable limits.

I come from the Saguenay region, where we went to court in 1991 or 1992 in the Audet case. An individual was an asymptomatic carrier of the gene for Steinert's disease and died in an ordinary car accident. But the judge refused the insurance because under question 29, which asked the insured whether he was the carrier of a physical or mental abnormality, he had answered no. He wasn't sick at all. His wife opened the medical file, and it was indicated there that he was a diagnosed carrier, as were his father and brother, and the insurance company refused to pay.

We must control this new aspect of genetics in order to avoid having to deal with these somewhat delicate situations after the fact.

The third characteristic of the new genetics are the multicentre or even international projects. I'm thinking of the United States, where ethics committees - I am a member of two or three committees - have to make decisions about projects that are funded elsewhere. Even if a family or personal data are coded, there are some delicate points that could affect privacy and confidentiality.

The third point, which is a variation of the second, is specific to genetic research and that's the gathering, safeguarding and management of genetic data on individuals and families. Sometimes, there must be exchanges between research centres and these exchanges can lead to difficulties. One wonders whether some day we will need legislation to protect genetic information, something similar to the Belgium legislation passed two years ago, which prohibits insurers from having access to genetic tests.

One must salute the Privacy Commissioner in Canada for publishing a document on genetic screening and privacy, as well as the three Canadian research councils which have just published a document containing a chapter on that issue.

Fourth and final point is the arrival of the private sector in major research projects that used to be the domain of hospitals and universities. We know that pharmaceutical companies and sometimes even insurance companies invest in research. Even university professors and researchers start their own profit-making corporations by selling shares and other companies are getting into genetic diagnostics. What is new here is the intervention of the private sector.

As long as government organizations, such as the Medical Research Council, can have some control over the research that is conducted, there is no great cause for concern. But if this goes over to the private sector, especially profit-making corporations, it is possible that the quality of care will suffer because of financial considerations.

It's important that organizations such as the Standing Committee on Human Rights and the Status of Disabled Persons examine the entire field of genetic research and intervention, so that we can avoid to deal with difficult situations after the fact.

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In a slightly humorous vein, I would like to add in closing that perhaps our society should learn a new kind of solidarity of the human condition, a kind of solidarity that would teach us genetic modesty since we are all carriers of about twenty recessive lethal genes. We are all genetically imperfect. We could learn tp be a bit modest in order to avoid future genetic discrimination. Thank you, Madam Chair.

The Chair: Thank you. I would like to follow up with you later on the issue of Tay-Sachs disease in the Saguenay-Lac-Saint-Jean region and I would like to hear your suggestions.

[English]

Thank you very much.

The next person is Dr. Lippman, please.

Dr. Abby Lippman (Department of Epidemiology, McGill University): Thank you.

I'll also try to respect the limits, but in doing so I may talk too fast for everybody. I will also warn you that under the best of circumstances I am not nearly as clear and linear a thinker as some of the earlier speakers, so I will be jumping over a series of points I would like to make.

First, I think it is exciting and important that it is this committee that is looking at issues of new reproductive and genetic technologies, because I think it is critical that these technologies be put into the context of human rights, justice, and rights of people with disabilities. Too often they have been circumscribed from that context. I think one should always keep in mind that they will therefore raise different kinds of questions.

If human rights is about the correction of inequalities and if it's about the protection and promotion of equality, I will make a rather rash statement that I really believe in, which is that new reproductive and genetic technologies cannot decrease inequalities because inequalities are not due to genes. So in a certain sense, the whole context of what you're doing has nothing to do with genes because inequalities don't come from the genes I may have or someone else may have. Inequality is how we respond to differences among people.

If we look at genetic and reproductive technologies in a human justice and human rights context, I think we have to realize that disabilities and all kinds of other differences - because not all differences are disabling - must be seen as dimensions of human diversity and as such worthy of promotion and protection on their own.

One of the fundamental human justice issues, in my book anyway, is promotion and protection of diversity. I will give you an example of that to follow up on something Gregor Wolbring was talking about when he talked about Down's syndrome.

Right now, one of the major applications of genetic technologies is for the prenatal detection of Down's syndrome. It is possible and is not really out of the realms of imagination at all that in about a generation from now, if not sooner, there may be no children, other than an accidental child, born in North America with Down's syndrome. We have the capability to apply testing to every pregnant woman.

I have a question that I've asked of geneticists for the last 15 years. I have yet to get an answer, but I will still ask the question. It's twofold. First, what is there about Down's syndrome that means we want to find all fetuses with it so that they're not born? I will put it in the context of the mother of a young adult with Down's syndrome who I've been speaking to about prenatal testing and in the context of how people with Down's syndrome themselves felt about testing. She said there will be nobody else being born like my son. So I ask us all to consider whether we want to live in a world where there is nobody with Down's syndrome. If we do, why?

My next issue is about justice and new reproductive and genetic technologies. Because we all become very romantically involved with progress or what we think of as progress, there tends to be an assumption that the newest technology is the better technology. I think we have to avoid an a priori assumption that these technologies are beneficial. They are not about curing, they are not about preventing. They are mostly about detecting.

Each time we should fundamentally ask what beneficial means. Useful to whom? For what purposes are they useful? I think if these fundamental questions are asked, one can start to put the use of these technologies into context and come up with some understanding of where they fit in the real world.

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The notion of genetic discrimination has been raised by several people already. I am not going to address it specifically other than to say that on this I borrow very strongly from some recent writings by an American lawyer named Susan Wolfe. She has made the point that genetic discrimination per se is too limited a perspective within which to view the use of genetic technologies.

There is more than genetic discrimination involved, because genetic technologies and genetic notions can be used to create and reinforce already existing power relationships. The technologies themselves perpetuate the subordination and oppression of certain groups of people. It is this group context that a law against discrimination against A or B is unable to grasp in its fullest, and I think one has to broaden the optic a bit.

The other thing I would just like to add is that there tends to be a notion that we can develop safeguards to protect people from the tests and the harms of each new development. Why don't we take a deep breath and ask what rights we want to begin with, which justice and which human rights we want to protect? Then we can ask if any of these technologies get us to this place, rather than the reverse, which is saying we have a technology here and how can we use it but avoid discrimination. Let's say we already have discrimination, and then ask what this technology is going to do to make it get better and improve it.

I think if you switch the focus and make those who are pushing the genetic technologies prove their case instead of playing catch-up to protect people after the technology is there, we may be able to move further.

Several people have talked about the notion of privacy. I was in a meeting about five years ago with someone who doesn't really agree with me on most things because he believes in high-tech uses, but he got up and said there is no longer any such thing as privacy. I think we should throw the notion of privacy out the window and assume that whatever anybody knows about us someone else is likely to know about us. The notion of protecting it is very difficult.

Those of you who are graduates of the University of Toronto may be particularly interested in this notion of privacy. Recently they undertook a study - I don't know if it is still under way - where they were sending questionnaires to all graduates of the University of Toronto asking them to answer questions about their health status. As well, there was an envelope provided and you could send your hair clippings or your toenail clippings and you signed a little piece of paper saying you allowed these to be used for whatever reason. Well, I have news for you. You can analyse DNA from hair clippings and from toenail clippings. You can analyse all kinds of drug use from your hair clippings.

If any of you have sent them, I would call up quickly and ask if you can please have your toenails back. I don't mean it to be taken lightly, but these are the kinds of things that are happening.

When we talk about privacy, everybody wants to participate in the study from the university they graduated from. Maybe. Privacy is a non-issue. I think in your thinking there are three -

The Chair: It doesn't have to be, or can it be?

Dr. Lippman: I don't think it can be any more. I really don't.

If in your thinking you're going to focus on any areas, the three areas in which you might want to look at the technologies are in terms of prenatal testing.

One problem with prenatal testing is in the response.

The second is raised by Dr. Summers. Some of the issues have to do with susceptibility testing. In general, my major concern is that susceptibility testing is irrespective of individual discrimination. It has the potential of excluding people from the social contract and I think this is a very dangerous threat to social justice.

The third thing is not quite related, but I can't resist throwing it in because there are other hearings being held on this in Parliament. This is the notion of DNA databanking, where information will become intersectorially involved as people try to use DNA information.

I'll stop now because I don't know how to wind up. So I'll just sort of end. Thank you very much for listening to me.

The Chair: You've added to a long list of food for thought, so thank you.

I think last, but certainly not least, we are going to hear from Dr. Bickenbach.

Dr. Jerry Bickenbach (Department of Philosophy, Queen's University): Thank you very much.

For the benefit of the committee, I just want to report a bit on some ongoing research I have participated in.

We are looking at, if you like, the intersection of the developments in genetic research in the human genome project and other genetic developments with existing social policy at a more fine-grained level rather than looking at more general trends.

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Working on the basis of some of the ideas that have already been presented, we have identified - and it didn't take much effort - three major, very broadly conceived social changes that the promise of genetic information and its proliferation would produce. One has already been mentioned; in fact, all three have been mentioned. One of the problems of being last is that you start sounding like you're repeating other people.

One is the medicalization of disability. To remind you, this has the effect of shifting the onus, the focus, of disability back onto the individual rather than onto the social conditions and the social response that create, in most cases and perhaps in every case, the disadvantages that are associated with disability.

Second is the creation of information. In a sense, human genetics is not a high-tech development. The research agendas are in some ways not cutting-edge. What is significant from a social policy point of view is the information that is created, who has access to it, and what it is used for.

Third, I think it needs to be said that eugenics here is inevitable. The developments in human genetics research have inevitable eugenic consequences. It's in our interest to track these. What I hope to do in my brief time is to give you some idea of what legislative responses have been tried and won't work for a variety of reasons. To do that, I want to focus on two of these. Others have been spoken of.

Take, for example, something that is very current and very important in social policy development, namely, managed care models of health delivery. If one is looking at the issues of access to health care and the effect human genetic information will have, you can see almost immediately that the proliferation of genetic information can be tacked onto managed care models. That information is absolutely crucial, or would be perceived as such, for strategic planning, which is the whole raison d'être of managed care.

For example, in a managed care model in the United States, which of course is a private system, genetic information is used to disqualify and to focus in on the populations they are projecting health demands for in a way which is discriminatory against people who have genetic predispositions that are costly.

In this country as well, this information is incredibly useful for strategic planning, for cost containments, and for a whole range of things in which we are involved in this country and across the world. The information will be used and it will be used to the detriment of people whose genetic profiles are not deemed to be particularly cost-free.

In the area of information more generally, insurance has been mentioned. Obviously the insurance phenomenon is an important one to consider. There is here an inevitable proliferation of information, which sadly may not be tamed by privacy legislation, confidentiality legislation, or indeed human rights amendments, either topic-specific ones as have been tried in the United States or others.

The reason is that this genetic information is of such great value for planners and, in the insurance context, for people who are underwriting, that it will be sought, it will be demanded, and an individual's freedom to provide this information will almost immediately be lost by the coercion of the request. One can either be denied insurance if the information is not provided or be given a special premium rate if it is provided. Either way you have coercive activity.

Can this be stopped by having confidentiality protection at the federal or provincial level? It's not entirely clear. We have Supreme Court decisions in this country that have taken risk underwriting in particular - I'm speaking of a case called Zurich - and said that even if it invidiously discriminates against people, insurance underwriting is a privileged activity that overrides human rights.

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The Chair: And their profit base, too?

Dr. Bickenbach: Apparently.

We have in this country the germ of a judicial response - the same can be said in the United States - that would make ways of controlling this information legislatively very difficult from a constitutional perspective. What this means from the point of view of this committee I'm not entirely sure, but merely looking at human rights legislation and beefing it up is not going to be enough.

In the area of eugenics, I think enough has been said to make it clear that in cases of genetically determined conditions for which we have no therapies or sensible responses, and for the future we won't, I think an outright ban would be the most appropriate response. I can't see any reason not to have an outright ban - except that it would be ineffectual - against all forms of preconception or conception screening.

The difficulty is that once the Pandora's box is opened and the information is available, somewhere a physician who does not recommend it will be liable, under ongoing wrongful life actions, to the charge that he or she failed to provide the parents with a mechanism to warn them of a potential problem with the fetus. Physicians will become vulnerable to suits if they don't, and standard practice will change. This ratchets up the information that is requested until it effectively becomes mandatory, and that is the difficulty in that area.

The Chair: Thank you very much.

We'll start with the general procedure. Most committees are very structured and very time-clocked. We try to be a little less rigid in here, but we will start with Mr. Bernier. We will do the tour de la table for those who want to ask questions.

[Translation]

Mr. Bernier, you have the floor.

Mr. Bernier (Mégantic-Compton-Stanstead): Following Mr. Bickenbach's statement which suggested that we prohibit screening for incurable diseases, my first question is of a technical nature. Is the screening that is done for Huntingdon's disease or Down syndrome very specific, very precise?

I have no training in this area. Is the screening done through a blood test and cannot be used to detect a whole series of illnesses or is it very accurate? Perhaps Dr Summers could answer this question.

[English]

The Chair: What's the technology to do the test?

Dr. Summers: The test for Huntington's disease is a blood test. It is very specific and very accurate. We only do testing for Huntington's disease. We don't take somebody's DNA and run a series of tests.

For Down's syndrome, it depends on the test. A screening test tells you whether the baby is more or less likely to have Down's syndrome. Amniocentesis or chorionic villus sampling - one of the invasive tests - will give you a virtually 100% answer on whether a baby has Down's syndrome or not.

The Chair: I would like to hitchhike a question in there for our general audience, and perhaps mostly for myself.

If you're doing the test for Huntington's, or amniocentesis, which is invasive as you pointed out, they can do a whole series of tests rather than just look for one particular...

Dr. Summers: One particular disorder.

The Chair: Thank you, disorder.

Dr. Summers: We usually don't. If we're doing amniocentesis, it depends on the -

The Chair: Does it depend on each hospital? Is it a code? How does it work?

Dr. Summers: There's a Canadian policy for prenatal diagnosis. With amniocentesis we test for Down's syndrome, all chromosome abnormalities and something called spina bifida, which is an abnormality of the developing spine. We don't do across-the-board testing, but if there's a family history of a particular disorder, we may do amniocentesis for that reason. If we're doing a blood test for something like Huntington's disease, then that's all we do. We don't test for anything else.

The Chair: Thank you.

Dr. Lippman: May I add to that? In your deliberations I think it will be important to think about a year or two from now, and not just what's being done now. In terms of the testing, I understand from a conference I was just at that south of the border, and therefore likely to come here, is something called multiplex testing, where one sample of blood can be run through a whole series of tests at the same time.

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Dr. Summers, I have no argument in terms of there being things that you can specifically test for because you know the condition is in this family and you're looking for it, but there are general tests that are done. So to add to the response to your question, sir, the exactitude, specificity and sensitivity of the testing really depends on what it is you're looking for and the technologies you use. It varies from condition to condition. So it's hard to give an across-the-board answer that if you test for this you are 100% sure. It depends on what tests you use.

The multiplex testing is coming along and is likely to be very much applied in the prenatal diagnostic arena.

[Translation]

Mr. Bernier: From a general standpoint, when a layman like me looks at the world of science from the outside, he has some concerns and a reaction in two stages. On the one hand, I'm fascinated by all these discoveries and I would like research to advance as far as possible in order to improve the lot of humanity in general, and of individuals particularly.

On the other hand, when I look at the consequences for individuals who are subjected to these experiments, my reaction is different. I'm convinced that if I personally had to make a decision, my reaction would be different again.

It's difficult to take a position on this problem. I would like to get back to the issue of enlightened choice. I was very interested in what Dr. Summers had to say about the need to make an enlightened choice and freedom of choice.

I would like to get back to this issue and would especially like to deal with children, whom we haven't discussed much up until now. It's easy to see that adults may have freedom of choice and can make enlightened decisions, but it's different in the case of children.

A few weeks ago, I was watching a television program on Radio-Canada concerning surgery performed on foetuses in their mother's womb when abnormalities had been detected. It was fascinating to see all that, but I was wondering what the result would be. Was this done simply for research purposes or were we really trying to improve the child condition.

Clearly, children cannot give their consent and someone else must make a decision for them. I would like to hear your views in this regard, especially on the matter of children.

The Chair: Dr. Summers.

Dr. Summers: First I would like to broach the issue of whether we can do anything once we have a sample in hand. We must remember that here in North America, we are in an era of individual autonomy, to such an extent that we have gone from enlightened consent to informed choice. Apart from the yes and no aspect, we must add an explanation of other possibilities, risks, benefits, etc., in order to truly let the individual make the choice of saying no, maybe or later.

Let's not forget that individual autonomy is such that tissue, amputated body parts, surplus blood - waste as it used to be called, even in legislation - which used to be cast aside and to which we had easy access to conduct research, since they were no longer considered part of the person, are now subject to the notion that "you need consent for everything" otherwise there is a risk of lawsuits if we don't respect the individual and so forth.

Even public health research or epidemiological research is extremely limited. Some experiments may some day give us the possibility of conducting 15 tests at a time, but for the time being, we are faced with almost the opposite problem. We end up with a plethora of consent forms. That's my first point.

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Secondly, three councils are working on developing new guidelines for research on children and are trying to strike a balance between the needs of children as a population and the need to find cures, treatments, preventive measures or means of understanding disease. We cannot conduct this research on adults or animals; children are not miniature adults. Sometimes we have to do research on their own diseases.

However, as was said earlier, in genetics, who's speaking on behalf of children and future generations of children? For the time being, we have to be very wise. Unless we have a treatment or some preventive measure to counter the development of a disease later in the life of a child, we must not conduct tests and use children to acquire information for other purposes.

Two or three weeks ago, the Supreme Court gave its interpretation of the principle of the best interest of the child. It said that the interests of the child have primacy. I think that's the starting point for the debate.

The Chair: The Supreme Court decision was handed down two weeks ago?

Dr. Knoppers: It was in early May, concerning the issue of custody and access by mothers and fathers who have to move to find a job.

[English]

The Chair: Do you have the name of the case?

Ms Knoppers: Not on me.

The Chair: All right. We'll find it.

Thank you.

[Translation]

Mr. Mélançon and Dr. Summers.

Mr. Mélançon: I think there are two factors concerning tests on children or young adolescents. She spoke of diseases that appear late, such as Huntington disease, for which there is no treatment. In my opinion, in such cases, we should leave children and very young adults alone.

I'm thinking of a kind of worry this will elicit in children especially adolescents who already have problems with personal identity, social adaptation, sexuality and everything else. It would be one more burden if they were to learn they are carriers.

If there is treatment available as Dr. Knoppers said, that's another matter. But when it's a disease for which nothing can be done, I think the best thing to do is to respect an individual's right not to know. We talk about the right to know; but someone could just as well have the right not to know. This may be debatable, but I think that in a democratic country where individuals are not seriously injured or in danger, we must respect the right of individuals who do not want to know.

This has huge impact. We've just concluded a study of some 700 youths, boys and girls, from16 to 19 years of age at the college level in the Saguenay. Among other things, they were asked whether they would like to know whether or not they were carriers of the cystic fibrosis gene. Since it's a recessive disease, a carrier is never ill. Approximately 70% of them wanted to know; 85% of those wanted to know for reproductive reasons.

We can therefore draw an initial conclusion from this: if they want to know for reproductive reasons, to decide whether they want children, it's pointless to have them undergo these tests ahead of time.

Those who did not want to know said they feared for their job, insurance, they were afraid their boyfriend or girlfriend would leave them because they would no longer be desirable; their concern was significant and was based on major reasons.

What can this mean? When there is no immediate need, except in rare cases, we should leave tests in the laboratories.

[English]

The Chair: Dr. Summers wanted to put in a word, and then we'll move on to the next question.

Dr. Summers: It's a very brief word. I wanted to say that I totally agree with the previous statements about the testing of children - it shouldn't be done unless there's a treatment, cure or prevention.

I think it's also important to remember that children are part of families, and sometimes you have to break or bend those rules because the family will fall apart if you don't. When we're treating genetic patients or whatever you want to call them, we are usually treating a family, and it's important to keep that in mind. I doubt any legislation would end up in this area anyway, but even so, it shouldn't be so rigid that the family would be excluded from the care of their child.

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The Chair: Thank you.

Mr. Scott.

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

I'm not sure if I'm directing my question to the right group or whatever, but it occurs to me that my colleagues... I'm overwhelmed by what I don't know, and I suspect that if I were to dedicate the rest of my perhaps short career to this, I would fall further and further behind, never catching up because the advances will always stay a little bit ahead of me. So the question becomes how we as legislators can possibly come to terms with our responsibilities. What's more, as the accountable people in the system to a certain degree, how do we meet the needs of the people in our constituencies who expect us to give direction or be aware?

I don't know if this is a question of procedure, but how do we strengthen the knowledge base of consequences? People have mentioned insurance, and that the legal framework within which we live has fallen behind to some extent. There are the rights of an insurance company to know things about me, as against my right to have other people not know. I'm sure that right was established well before the consequences were as great as they would be, given the knowledge that would become available. Am I making any sense at all? How do we develop the knowledge base?

First of all, is there consistency within your field as to what this knowledge base is? How do we develop it so that it can be helpful to us and we can make informed choices as legislators in terms of the consequences of the things we do, the laws we uphold or change or whatever? Perhaps I'm not directing it to the right group, and perhaps I'm not even clear.

The Chair: I can tell you one thing - you're clear. To me it seems like a task that has no ending. I don't like the insurance part of it, however.

Dr. Lippman: I wouldn't dare to try to answer your question, because I think that's what you're here to do. One thing I'd like to pick up on is your comment that you're overwhelmed by what you don't know. Don't just be overwhelmed by what you don't know in terms of the scientific aspects of this. Even more overwhelming is what we don't know with respect to social experiments such as prenatal testing that we have been engaged in for 20 years, as well as susceptibility testing. We really do not know...

Barbara Knoppers talked about the rights of the children and putting the children in the centre of these things. I am still amazed that not one study has been done that asks children born following these procedures whether they knew their mother had undergone amniocentesis. What do they think about it? We don't know how we're creating a whole mindset, so we need a lot of information about this social experiment.

Another thing that's missing is that we have not had a real public discussion about these issues, the royal commission notwithstanding. There was not the funding infrastructure in place so that people who are overwhelmed about this can talk about it.

Coming back to what the first question was addressing, I think we need to demystify genetics. Most of the problems we face are not genetic. When teaching, I say that if we really want to improve the health of the babies being born, we would eliminate poverty and violence rather than genes, because that's what's causing the problems. The genes just don't do it.

It's unfortunate. Huntington's disease is an important condition, but we shouldn't get stuck on it. It's very rare, and rare cases make bad policies and bad choices.

Let's come back to the second part of this committee on persons with disabilities. Some of us have disabilities right now, and some of us will have some before we die. We're all going to die some day. Genetics will neither prevent disabilities nor prevent death. That doesn't answer your question, but I think that's the way you need to think about what you're going to do. You can't just lock the barn door every time a new genetic test comes along and think the problem is there. It's much more profound and fundamental than that.

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The Chair: That's why I asked Dr. Mélançon.

Tay-Sachs disease is rampant in certain people of certain countries of origin. If we didn't do the test, the children would die. So you might as well do the test and the small amount of prevention, then the children are fine. So there's always the other side of the coin.

I know that everybody wants to respond. So, Andy, is it all right if they all just respond? I know Mr. Ménard and Mr. MacLellan have questions.

Jean, did you want to say something before you have to walk off? Then we'll hear the interventions.

Ms Augustine (Etobicoke - Lakeshore): Madam Chair, I'm really very pleased that I had the opportunity to hear these experts in their various fields. There were several things that I would have liked to ask around certain kinds of conditions that are said to be prevalent in some groups and not in others.

Lupus is one. What's the other one? I've just lost it. But it's supposed to be prevalent in black -

A voice: It's sickle-cell anemia.

Ms Augustine: There's sickle-cell anemia and several of those diseases. I'm wondering about the benefits of knowing or testing for these and the implications of all of this.

But since I have to go fight for some jobs for some people in my constituency, I can't wait for the answer.

The Chair: We'll get it for you in the course of the discussions.

Ms Augustine: Thank you.

The Chair: We'll start at this end of the table. You wanted to respond, so please do.

Dr. Bickenbach: I'll try just to respond in chorus with Abby's remarks and add one thing. It is very tempting to think that the issue before us is a highly technical one requiring technical expertise. That is a trap you needn't get into. It's not just because I was trained as a lawyer and not as a geneticist. It's important to realize that the science behind this is actually not all that complicated. The technology isn't extraordinary. What's important and what's difficult are the social and ethical consequences of it.

There's a very horrid story of a woman who had one of these tests some years ago. It reported Down's syndrome. She asked her doctor what it was. She was told she had a monster in her.

She took that as the scientific medical advice of an expert. That is not science; that is prejudice. That is a bizarre reaction on the part of one person to do something about which he or she didn't really particularly know.

What we have to focus on and what we are qualified to focus on are the ethical and the social manifestations of it. Of course there are legal difficulties that are technical as well, but this is not a highly technical area of expertise. We need the knowledge base, but we don't need to defer with respect to these other judgments.

Dr. Wolbring: I think we were looking at the fact that the bigger push for all the testing is not with young adults or young children, but really prenatal testing. There's also a major problem. It's also that we're going away from prenatal testing to pre-implantation diagnostics, which go even further down. Then we don't have to work with the problems of abortion and the moral issue on that.

I see today an acceptance. For example, I have just a few numbers. Of those women who were being tested in Canada in 1990 who thought they had a Down's syndrome child, 87% opted for abortion. Why is that? It's simply because they felt they were totally without support in society and totally overwhelmed by simply the perspective of having a Down's syndrome child. That happened with most of the others.

If you just sit there and have the testing and you know more or less, you're doomed. Your neighbour will say there was a test and you didn't abort, so it's your mistake. There is no way you can make an unbiased and totally pressure-free decision because you're living in a society context. You're living with your neighbours, your family, and with whatever society provides you as support, whether it's payment for the treatments or whatever.

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We can't just say, okay, they have informed consent or informed choice, because it's all part of what they're brought up with and how other people will react to them. It's a catch-22, a down-spiral. We have an increasingly negative perception of disability, not just Down's syndrome.

I have here a survey of physicians in Quebec. For example, it states 75% to 100% think trisomy-21, which is Down's syndrome, as well as Huntington's disease and muscular dystrophy should be aborted. You can go on. For cystic fibrosis it's 66% to 74% and for spina bifida it's 59%. I have one from France where 63% of French physicians polled said dwarfism should be aborted. We now know there is a test available for dwarfism. For hemophilia it's 55% and for limb reduction, like me, it's 48%.

We don't live in an unbiased society. These are physicians. How can I trust a medical professional with this kind of bias?

We know from the global media, as a reaction to the royal commission report, that 27% of physicians in Quebec think it's irresponsible for a parent to give birth to a disabled child. In England, after the Warnock committee came out, which is the English equivalent to your royal commission report, they changed the abortion law. You can now abort a disabled up to the day of birth - only disabled.

There also was, in 1991 in Utah, an initiative to cut down on the allowance for abortions, but one of the things that was allowed was if it's disabled. There are some other countries, like Austria, which have, as we call it, eugenic indications. You can have different treatments if it's referred to as disabled. You can use different time scales or whatever. They call it therapeutic indications; I call it eugenic indications.

All of these things are showing that the society is so far away from an unbiased, totally free, informed choice possibility that if we really allow these tests to go on... And they're only techniques.

For example, Margaret Thompson, one of the Order of Canada recipients and former president of the Genetics Society of Canada, said, as a defence witness in the sterilization trial of Leilani Muir in Alberta, in defence of the eugenics board and sterilization, that we couldn't do it differently at that time to prevent the problems of the mentally disabled, because we didn't have contraceptives and abortion as tools.

These are only different tools we are looking at, whether it's prenatal testing, pre-implantation diagnostics or infanticide. In 1972 a bioethicist called Peter Singer wrote in his book, using the example of hemophilia, that it's morally okay to kill a disabled with hemophilia because then the mother has a chance with another child who is not disabled.

Nowadays you don't have to use infanticide for most of the cases. You use it in the course of prenatal testing. For Huntington's you don't have to do it afterward. You can do things before birth. More and more that is where the tests go: not to test people who are born, but to test people before they are born, or even to test them before, in a reagent glass or in vitro at eight-cell stage. You test the cells, pick the one that is genetically clean and has no problems and then reimplant the cell. Then you don't even have the problem with abortion.

What I'm questioning behind all of that is the perception of certain forms of life. I wouldn't say Down's syndrome is a disease. Down's syndrome is simply a different life form, a different way of living. Definitely most Down's syndrome people don't perceive themselves as suffering. This is our perception, as the ones with a certain IQ, who believe when you're below a certain IQ it must be bad and it must mean suffering. This is already perception.

When you look at the time thalidomides were born and at the perception of us in the media at that time, it was exactly the same. We were monstrous, there was no way we could live, and it was better to kill us after birth, because there was no testing available at that time. It's the same concept.

Now it will come back on the market, very likely, so you might have a problem with this here in the future, when it gets relegalized in Canada, when it gets used for AIDS. All of these kinds of things come together. It's really the perception that is already changing. Therefore, I think, as a disability movement, we can't afford the tests because they're changing

[Inaudible - Editor]

.1700

The Chair: Thank you very much.

I've forgotten who had their hand up in the panel. Dr. Summers, then Dr. Knoppers.

Dr. Summers: It's hard to speak after that.

I certainly agree with what you're saying, but I also see it from a family's point of view, whereby a family chooses to have a prenatal diagnosis... I should say that there's still a very large proportion of families in Ontario choosing not to have screening or testing even though they're eligible to be tested. That's because they know that if they had a baby with Down's syndrome they wouldn't abort the pregnancy, so they continue on.

I think that's very important to consider. This is not across society. There is a very large proportion of society that is quite accepting of disability. Unfortunately, there is another portion that is not, but I don't think you should slam society as a whole.

The other thing is that this is different in different parts of Canada. Just anecdotally, one of my colleagues moved to Newfoundland recently. He's a genetic counsellor. He says that rarely do people terminate pregnancy for Down's syndrome there. That's because the way the families live and interact, this is perfectly fine. Everybody lives with it, and it's no big deal. So it may be sort of a citified thing. I don't know what it is.

Getting back to your question about learning about genetics, I'd just like to reinforce what Mr. Bickenbach said. The basic scientific principles of genetics are quite simple. Almost every day of my life I am teaching these to people who don't have English as a first language - they often have very little English - but they can understand that.

So to me, the important principles here are not the scientific principles. I think anybody can learn them. I think it's the ethical and social principles, as you said, that we have to not necessarily protect people from, but make them aware of.

Ms Knoppers: I'd also like to add to that. I'll be brief. I think one of the two major ethical issues today is the one you identified, which is education, and not technical education but an appreciation of diversity, which Dr. Lippman mentioned.

However, most of us - I include physicians, policy-makers, and so on - haven't quite caught up with Mendel's peas yet, and there is a bit of catching up to do. So while we don't want to become technologists, there is an information explosion with which we have not kept up, and the schools have not kept up.

So education is at the basis of understanding. If we don't understand what's happening, what the choices are or what the directions are, we may or may not want to go, because we understand the implications. Then we will become more discriminatory instead of less.

The second thing is what I call a form of eugenics that's different from what is normally referred to as either positive or negative eugenics, and so on. It's what I call socio-economic eugenics. It is the sum total of so-called free choice made by individuals whose choices are not so free because there is no, a lack of, or a wholly insufficient socio-economic infrastructure for people living with disabilities. How free is your choice when you're free to make it, but afterward society does very little to help you and your family live with the consequences?

The Chair: Good point. Dr. Lippman, then we're going to go to Mr. Ménard.

Dr. Lippman: I was going to reinforce what Professor Knoppers said, because I think the distinction between private and public is really artificial. She said the private choices make public policy just as much as public policy puts in the constraints in which private choices are made. I think we always have to say, when we're talking about informed consent, choix éclairé, that they must be contextualized, because the menu from which the choices are being made, as Professor Knoppers has said, is extremely limited for most people.

So a woman may perfectly well have all the information to choose to be or not to be tested, but if there is no respite care, day care service, infrastructure for education, or prospect of a job for a child who is born with a disability, does she really have a choice about bringing this child into the world? So she seems to be making a choice, but in some sense it's not even coercion, it may just be ordinary conformity with what has to be done to survive in 1996.

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The Chair: Thank you.

[Translation]

Mr. Ménard (Hochelaga - Maisonneuve): Madam Chair, you know that you're my friend. I have five questions and I will ask them quickly in order to allow for a general exchange.

A few weeks ago, we experienced an extremely intense debate here in the Commons. Perhaps you followed it directly or indirectly. The debate was about ending discrimination on the basis of sexual orientation. We heard many witnesses, including a number of scientists, pediatricians and psychiatrists who shared their expertise.

Of course, as members of Parliament, we did address some of the concerns that you've touched on. My question maybe somewhat removed from this debate but not completely. According to your expertise, do you believe that homosexuality is something genetic? What can you tell us as experts, as scientists? I don't want to open up that debate, but I want to take advantage of the fact that we have scientists here before us in order to take up that question.

My second question is for Dr. Wolbring specifically, whose testimony I have found very striking since he set himself apart from the other two, on two points. If I understood you correctly, you stated that the genetic component is only a very small part of an explanation for the genesis of the disease. You spoke more specifically about breast cancer. I would like to know more about what you are alluding to specifically.

You also stated that the more research there is, the more the perception of disabled persons is negative. Those two statements could be extremely controversial. Could you clarify your thoughts?

Here are the last two quick questions. I am very interested in AIDS and I am the Vice-Chairman of a subcommittee on HIV/AIDS. The Commons is going to hold a debate, since - I am giving our Chair a scoop, knowing that I always count on her discretion - , next September, I will be introducing a bill to compel, in a very civilized way, pharmaceutical companies to provide a compassionate access to experimental drugs.

When a drug is not approved and someone has a "catastrophic illness", according to Health Canada terminology, a broad ethical question arises as to whether a person should have access not to medication, but to an experimental drug. I for one am convinced they should. But there are two schools of thought and it is only part of the role of ethics and research committees which is institutionalized in legislation, namely in the United States.

It is unthinkable for a physician to bear the responsibility of providing compassionate access to a drug in the absence of an ethics committee, as is the case here in Canada. I would like to hear your opinion on compassionate access to experimental drugs.

My last question is for Mr. Mélançon, who said that there was more and more globalization of genetic research. If I've understood correctly, when you participate in international research projects, you face issues regarding the transferability and confidentiality of data. I'm not sure that I fully understood. As that seems important to me, I would like you to elaborate on it.

The Chair: Could you repeat your last question?

Mr. Ménard: It deals with the transferability and confidentiality of data used in international projects.

The Chair: O.K.

Mr. Ménard: My favourite question is homosexuality.

Dr. Lippman: There is no scientific basis.

The Chair: Mr. Mélançon wanted to begin.

Mr. Ménard: Madam Chair, we heard a spontaneous remark from the lady who said that it wasn't scientific.

Dr. Lippman: Based on my expertise, no genetic basis has been established; there is no link between homosexuality and genetics.

Mr. Ménard: So you're saying that homosexuality is not genetic.

Dr. Lippman: No, absolutely not.

Mr. Ménard: It's environmental.

Dr. Lippman: It is not genetic.

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Mr. Ménard: You would have only got half marks in the test.

Dr. Lippman: There is no gene for homosexuality. A person is not gay because he or she inherited a gene for homosexuality.

[English]

In terms of the breast cancer, if I understood what you wanted, associations between breast cancer and DNA patterns can be detected, but the exact meaning of many of these associations remains to be determined. The reasons for testing are also unclear, because even if someone has the DNA pattern associated with breast cancer, it's not clear what to do. It does not guarantee that the woman will develop breast cancer, and it is not a guarantee - other than that she may be at higher risk if she comes from a family where there is a history of cancer...

The interventions are quite Draconian in terms of what she might do. One approach is to do a bilateral mastectomy on women who are shown to have a DNA pattern associated with breast cancer, but that does not guarantee she will not subsequently develop cancer. If she does nothing, it's a very... We're at a stage of basic ignorance about the meaning of these patterns, and it is far too premature to start screening for breast cancer genes

[Translation]

even if pharmaceutical companies are advancing quickly in the field, before screening. It is quite clear that that is not really necessary.

The Chair: Thank you. Mr. Mélançon.

[English]

followed by Dr. Summers.

[Translation]

Mr. Mélançon: Abby Lippman has sort of picked up on Mr. Ménard's theme and stolen my scoop. The question as to whether or not homosexuality has a genetic basis is one that students, whether they've graduated or not, always ask.

Mr. Ménard: They should have done graduate studies.

Mr. Mélançon: I fully agree with Dr. Lippman; at present, there does not seem to exist any genetic determinism, except in the case of identical twins, where if one is homosexual, the other seems to be likely to be homosexual as well 70 to 75 per cent of the time. There can be several causes, including environmental or traumatic ones. There does not seem to be any genetic basis.

If this famous gene were ever identified, we would be left facing rather significant ethical, social and even moral and legal consequences; there would no be liability, as one would simply have to live with a condition like that.

As for your other question on the globalization of research, I will wait until the others have commented on your first question, even if it means I have to come back to it, if I may.

Mr. Ménard: Of course.

Mr. Mélançon: In my view, the issue of exchanges is the most important point I've raised. While they are necessary, we are skating on thin ice.

An Hon. Member: Legally speaking?

[English]

The Vice-Chairman (Mr. Scott): I think there's someone else.

[Translation]

An Hon. Member: Yes, sir, but...

[English]

The Vice-Chairman (Mr. Scott): Dr. Summers.

Dr. Summers: I want to comment on a couple of Dr. Lippman's statements. First, I would tend to agree that homosexuality is probably not genetic, but I would never say never. I'm glad she's so convinced, but I'm not entirely familiar with the twins studies.

When you have concordance in identical twins, there's always that question of whether it is there. I think it would be nice if it was genetic, because that takes away this discrimination against people because of it being a choice. If it's a gene, in some ways I think that changes the responsibility. Anyway, I don't really want to get into that discussion, but in my mind that question is still open and I don't know the answer to it.

The second thing was about screening for breast cancer, and I certainly agree that we should not be going around screening people. About 10% of breast cancer is genetic. We know of four genes that will cause breast cancer, and one of them we can screen for in one particular ethnic group - Ashkenasim Jewish women or men.

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I think the comment about the Draconian measures should be looked at again, because prior to this gene being discovered a lot of women were choosing to have double mastectomies just because they were in a big family at risk of breast cancer. Breast cancer screening may change that decision for them. So I think there are pros and cons to this, as there are to any tests that we have available.

The Vice-Chairman (Mr. Scott): Dr. Wolbring.

Dr. Wolbring: To answer the three questions, first, with the gay or lesbians, there is research into it. So obviously there is demand from some groups who would like to have a genetic basis for gays.

I know that in the gay community it's roughly 50-50. As Anne says, if it's genetic you can perhaps counteract certain religious arguments, but on the other hand you will be labelled a disease rather than a lifestyle.

So gays will have to sacrifice their different lifestyle and become a disease, which then must be cured because we want to cure diseases. So you might have a problem as a gay group if it becomes genetic. It will vary from society to society in terms of how they react to it, whether it's appreciated and whether they want it.

In terms of breast cancer, the public now thinks we have the breast cancer gene, so we can look at a cure and we won't have breast cancer any more. That is a misconception set up by the media and whoever makes the PR behind it, because it's only 2% to 5% by my numbers - Anne says 10% - who are genetically prone to breast cancer, but for the other 90% this has nothing to do with it. So you will still have a major problem.

If you take all cancers or things like cystic fibrosis - that gets a lot of attention, but only500 people die of that in the U.S. each year, as compared to 400,000 smoking-related deaths. The perception of genetics totally overshadows the fact that for most conditions our lifestyle is responsible.

The last one, on research testing, is the same kind of thing. Everything becomes genetics. We're getting totally away from personal responsibility and lifestyle. Most genetic conditions will not be applicable to gene therapy, for example, which is sold like the magic bullet.

Only single-gene disorders - 3% of genetic disorders are single-gene disorders - will be eligible, if at all, for gene therapy. For polygene disorders or genetic disorders with environmental components, gene therapy is out the window. There's not even a clue at the moment in terms of how to deal with these kinds of things in order to cure them.

So for a long time to come we will have an increase in testing - for gays, for lesbians, for violent behaviour or whatever we're looking at, there's enough out there - but we won't have any cures. It leaves a very negative way in terms of how we can deal with that. In a society that doesn't accept these things, termination is the only solution they have...with prenatal testing; otherwise it makes no sense.

I hope this answers the three questions you had.

The Vice-Chairman (Mr. Scott): Thank you.

Two more committee members would like to put questions, but we have less than 10 minutes left. Dr. Lippman and Dr. Summers both want to speak to this, and then Russell and Glen both have questions.

Mr. Bernier: Dr. Mélançon also has an answer to give.

The Vice-Chairman (Mr. Scott): And Dr. Mélançon.

Dr. Lippman: I can be very fast.

Irrespective of whether being gay is genetic or not, keep in mind that merely saying something is genetic is not going to change society's attitudes towards it. You can transfer from being gay to being alcoholic. If someone finds a gene for alcoholism, will people feel differently about alcoholics because of that?

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A good example is Down's syndrome, which is clearly related to a genetic disorder. Do people feel differently about Down's syndrome because it's genetic than they would have when they thought it was because of something the mother saw during her pregnancy and there was an imprinting, as people believed from old tales?

I think we're all avoiding your final question in terms of therapeutic intervention for SIDA, because none of us has - I don't have the answer for that.

The Vice-Chairman (Mr. Scott): Dr. Summers.

Dr. Summers: I want to say that all that is genetic is not disease. We have somewhere between 50,000 and 100,000 genes, most of which work just fine, and we'll probably learn a lot more about disease processes by knowing what normal genes do. I think it's a big mistake to see every gene as a potential disease, because obviously that's not true.

The Vice-Chairman (Mr. Scott): Dr. Mélançon.

[Translation]

Mr. Mélançon: I think that it is crucial to exchange research data among centres and internationally. Exchanges would be useful in two or three respects, primarily in genetic epidemiology to understand the migration of genes. In addition, it is interesting to find more or less the same mutations in the Saguenay - Lac-Saint-Jean, the Charlevoix and the Quebec regions, as those that occurred among the French in the 17th century.

However, there are already codes. For example, a number is assigned to family X and to each individual. It is not necessary to know the names of the people to do good work in genetics. The data should be anonymous or depersonalized. As the genes are identified, the famous family genealogies would be less and less useful and there would be less and less of a risk of violating privacy. Exchanges among countries should never reveal the code, so as to prevent unpleasant consequences like someone from the South being preventing from returning to Quebec, or Canada or elsewhere to study unless the person has received the authorization from his or her attending physician.

Exchanges are sometimes necessary, but revealing the name of the people is not. I am a member of the ethics committee of an American company that requested the anonymity of children in research. The company refused, insisting that it was absolutely necessary. Five or six months later, we were informed in writing that numbers were now being used in place of babies' names.

[English]

The Vice-Chairman (Mr. Scott): Thank you.

Mr. MacLellan.

Mr. MacLellan (Cape Breton - The Sydneys): Thank you, Mr. Chair, and thank you, everyone.

This is very helpful. My concern is that the insurance and drug companies will put on excessive pressure that doesn't allow the research to develop in the way it should. We're going to manifest a greater publicity to this before we're ready. Insurance companies insure on probabilities, and they don't have a right to know anything because they're charging fees on the basis of probability.

I want to know how you feel we should characterize ourselves in the next few years, and what direction we should take. I also want to know if, as Dr. Mélançon said, there is a major stress factor here that we should be aware of, and whether that should be a consideration until we deal with more development.

There has been talk about the possibility of a gene that would indicate a predisposition to crime and criminal activity. Has that in fact been shown?

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Dr. Bickenbach: Perhaps I could just respond briefly to the insurance question. There is a phenomenon known in insurance philosophy called adverse selection, in which the insurance company tries to ward off against the possibility that individuals who know their fate will over-insure and those who don't will under-insure. That perspective, of course, is counteracted by what you might call an asymmetry of information, so it would be conceived to be a legitimate pursuit of business interests to acquire as much information as possible to offset this other anomaly called adverse selection.

So the dynamics in the industry are such that the information will be sought and its probabilities noted actuarially when certainties - if the human genome project proves to be successful - will be factored in, and you'll eventually have a kind of paradox for the insurance industry. Either they hold on to all their information and the consumer has none of it, in which case no sensible consumer would ever, in his or her right mind, buy insurance, because it's a losing game, or the information is known across the board and the phenomenon of insurance will disappear. As you say, it's only based on probabilities.

Accident and life insurance will still be possible, but the oddity here is that health insurance as an industry, in the United States primarily, will have to be radically reconceived.

I've already mentioned the legal spin in this country on underwriting. It seems to be the law in this country that an insurance company has the right, notwithstanding human rights legislation, to differentially impact upon people by virtue of non-stereotypical, non-irrational distinctions. Age, sex and genetic predisposition would certainly be there. So it's a very difficult problem, very difficult.

The Vice-Chairman (Mr. Scott): Dr. Wolbring is next.

Dr. Wolbring: No genes have been found, of course, for violent behaviour, but there are highly reputable scientists who are searching for it, especially in the U.S., mainly Frederick Goodwin, former head of the U.S. Department of Mental Health.

All of this research goes on that we would find ludicrous. Hitler would have been proud. He looked for all of these things as a connection - violent behaviour, alcoholism. We are doing the same thing, only we try to find it in the genes. Everything is defined by genes. I think it is a dangerous development, because most of it won't be in the genes. It takes away responsibility from people - I can't help it that I'm violent, it's in my genes.

What are we doing with that? Legal battles - we don't even want to get into that. I think we're better off to believe violence is a personal responsibility and not a genetic responsibility. These people all find money to do the research. They don't sit at home and do that. They have to find money. This shows there is some interest in finding this kind of connection; otherwise, they wouldn't be in for the money. That's the scary part.

[Translation]

Mr. Mélançon: I believe that genetics will probably force insurance companies to change their ethics, and to learn that even in capitalist countries, profit ethics is no longer enough and it is now necessary to share the burden linked to hereditary diseases with government and families.

In other words, the profit ethics, even if it is not one, will have to be replaced by the ethics of genetic solidarity which will result in everyone sharing the costs linked to hereditary or genetic diseases.

[English]

The Vice-Chairman (Mr. Scott): Dr. Lippman.

Dr. Lippman: I would just like to make one of my usual outlandish statements, this time with respect to the issue of genes and crime. I think the evidence is that anybody looking for relationships between genes and crime is on a social project, not on a scientific project.

Who is the criminal? I have yet to see any research grants being proposed to look at the genetic patterns in those who pollute the environment, those who carry out other things that some people in this society would consider a crime. So there's a social agenda behind the issue of genetic linkages to violence and crime, as I believe there is with respect to homosexuality.

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The Vice-Chairman (Mr. Scott): Dr. Summers.

Dr. Summers: Again, I have to disagree somewhat. I don't really see any point in looking at criminals and seeing what genes they have. I agree, it's probably a social agenda, nothing to do with science. However, there's certainly evidence for genes that cause behavioural changes. These may not be negative behavioural changes; they're often positive behavioural changes.

For example, there's a syndrome called Williams syndrome. Those children are very bubbly and vivacious. You can almost tell them by their personality rather than by their physical features. So there certainly are genes, I think, that influence behaviour.

I guess I always like to have an open mind. Maybe there are violence genes. I don't know. But I don't want to say no.

Dr. Lippman: I just have to clarify one thing. I have never - if I have, I don't mean to - here or anywhere else, ever denied that genes play a role in all kinds of things: behaviour, how we look, what we eat, all kinds of things that we are. It's the deterministic approach to genes, thinking that we should reduce things to genes as a way of understanding a problem, that I have been addressing, not the fact that genes... It's self-evident that genes play some role.

The Vice-Chairman (Mr. Scott): Mr. McKinnon.

Mr. McKinnon (Brandon - Souris): I am just so pleased to be here with you people today. I'm not a regular member of this panel, but I was a teacher and I did do some biology. I know enough just to be dangerous in some of these areas. Let me also identify the fact that I am an identical twin and I'm available for research. I've been fighting the urge to donate toenails and hair to the University of Toronto, as you can tell.

I have a couple of points to make. One, my impression from what I've heard here is that we need to protect and preserve the good old-fashioned way of doing things, as we have been doing, in terms of not allowing forces to force society in a way to have compulsory testing for anything. I hope I have the correct view on that.

Insurance companies: I think we've all had some concerns. I was very impressed by the comments all of you made.

The concern I would like to talk about is how do we manage the situation where databanks are being developed and yet we need to also have levels of privacy? The comment of Dr. Lippman that sticks with me is that we've lost privacy in the long run. Therefore, should we stop databank developments wherever they may be?

Dr. Lippman: Yes. I think at this time there is no reason to maintain identified samples in DNA databanks. I know the Solicitor General has been having hearings. Several of us have participated, or tried to. I don't know the exact stage at which things are, but there are reports that the Privacy Commissioner of Canada has submitted a report with respect to DNA databanking.

I think it's something that really is not needed now. The crimes it is supposedly addressing, with the criminals it's supposed to address - it can be found in other ways. I think premature databanking for forensic uses is highly premature. There is no reason to keep identified samples for any other reason at the present time.

That's a personal opinion.

Dr. Summers: Once again I absolutely agree with you. I was appalled at the idea that there was this criminal databank being set up by the government. I just couldn't believe it.

But there are reasons to keep DNA samples - for example, if there's a disease running through a family where members may wish to be tested in the future, and a person who is affected is going to die very soon. You may need their blood in order to do testing for other family members, which is a common way of doing DNA testing. In that kind of situation it's in fact very important to have DNA samples kept.

Mr. McKinnon: As reference.

Dr. Summers: As part of your testing process.

The other point I would like to comment on is when you talked about the good old-fashioned way of not forcing people to do things. In fact, the old-fashioned way was to force people to do things. I think we've now evolved, or hopefully are evolving, into an area of medicine where we do ask the patients to make the decisions themselves. But obviously, although I guess it's not obvious to everybody, the old-fashioned way of doing medicine was that the doctor said you should do it, so you did it. I think we're in fact entering a new era in which people take care of their own health, which I think is very positive.

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The Vice-Chairman (Mr. Scott): Are there any other people who would like to respond to this particular question?

On behalf of the chair, I'd like to thank everyone. It's been a very helpful afternoon. I can promise you that you will hear from me as I reread the transcript. I'm sure we'll be pursuing some of the lines of thought that have gone through this as we try to come to terms with this. Thank you very much.

The meeting is adjourned.

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