Renewal of Canadian Biotechnology Strategy 1998

Prepared by Dr. Gregor Wolbring
on behalf of the  Council of Canadians with Disabilities

1) How can Health Canada help Canadians understand biotechnology 's contribution to their health?

2) Given the importance of early detection of risks to health how should Health Canada apply biotechnology in its surveillance and diagnostic activities?

3) Which biotechnology based prevention techniques should Health Canada put emphasis on and how should it do this?

4) What priority area's off biotechnology will require regulation in the next decade?

5) How should these be addressed? 

6) How can Health Canada increased the public's awareness and understanding of the regulation of  biotechnology?

7) How can Health Canada increased public participation in regulatory policy development?

The above are questions our submission should address according to Health Canada. Instead of an Executive Summary, we will answer the questions in a summarized manner and the overall thoughts of our community towards bio/genetechnology will be dealt with in the main body of our submission.

1) How can Health Canadahelp Canadians understand biotechnology's contribution to their health? By giving the public a balanced and realistic view of biotechnology (e.g. gene therapy) and its abilities. This has to include a more detailed description of the problems associated with the technology(e.g. the development of a society where society controls the quality of their members). The health sector consultation document totally ignores these problems. It also does not deal with the threat of private health care in the biotechnology context and with the division of responsibilities related to health and biotechnology as many responsibilities are within the jurisdiction of the provincial or of the municipality.

2) Given the importance of early detection of risks to health how should Health Canada apply biotechnology in its surveillance and diagnostic activities?

Health Canada should definitively not promote diagnostic tools which have only a termination as a following option and therefore are only useful to GET RID OF THE DISEASED,or THOSE WITH A DISABILITY  BUT NOT TO GET RID OF THE DISEASE OR THE DISABILITY before  societal safeguards against eugenic abuse are in place. Health Canada documents have a tendency to use the words of predictive medicine and preventive medicine a lot. In the case of most genetic tests this does NOT mean cure or treatment BUT abortion or infanticide. Health Canada should make it clear that this is the reality for a long time to come.

3) Which biotechnology based prevention techniques should Health Canada put emphasis on and how should it do this?

It should de-emphasise the use of genetic tests. As outlined below our group believes that society does lose more than it gains by focussing on predictive genetic tests.

4) What priority areas of biotechnology will require regulation in the next decade?

Gene therapy (somatic and germline); artificial womb use (the prediction is that we will have within 10 years a functional artificial womb); predictive genetic test (on any level from prefertilisation and uterine lavage to postnatal testing), human cloning, xenotransplantation, transgenic technologies just to name a few, are priority areas which will require regulation in the next decade.  And we need accompanying regulations of the insurance sector, health sector and others to ensure that genetic discrimination does not happen (especially if Canada signs the UNESCO declaration on the Human Genome which explicitly forbids genetic discrimination).

5) How should these be addressed?

These should be addresses by legislation and education. There should be inclusion of the stakeholders-- meaning also to include disabled people on every committee level, every advisory body, every ethics committee. There also needs to be an increas in the numbers of disabled academics who work on the issue of biotechnology and human rights.

6) How can Health Canada increase the public's awareness and understanding of the regulation of biotechnology?

see section on education in this submission

7) How can Health Canada increase public participation in regulatory policy development?

First of all this can be done by leveling the playing field. Every one must have the same rights and possibilities. As the consultation process is set up at this moment it seems to be a smokescreen for a pro biotech agenda. A letter of protest is attached to this submission and also has been send to Allan Rock.

I would like to start this submission with a personal statement. I am a biochemist and I believe that research can be used in a way that the people can gain from it. But I also believe that the scientist has to monitor how the research might be used in the context of any given society. In the case of bio/genetechnology it is of paramount importance that the scientist is vigilant in monitoring the use and so should the use be monitored by many others.  Bio/genetechnology has the potential to fundamentally alter society as we know it. It has the potential to divide society into two classes the genetic positive (meaning defect positive) ones and the genetic negative ones. It also has the potential to move a "right to be healthy" (which is the basis of universal public healthcare coverage) as we have in the moment in Canada  to "No right to be unhealthy" meaning that  whether prior or after birth it is detected that a human being is not measuring up to societal or individual expectations (whereas most individual expectations are a reflection of societal expectations) that human being has no right to exist. People are judging each other in society based on the characteristic they attribute to each other.

The unravelling of the genetic code has the potential of an increased intolerance towards human characteristics viewed as undesirable and preventable (especially if these characteristics need accommodation by the majority of society). I strongly believe that so far the debate about gene-technology is not happening in Canada and we don't have ANY societal safeguards in place to prevent a society  intolerant of preventable characteristics (genetic or otherwise) which need accomodation and/or support by the majority from acting on this intolerance.

We often hear that technologies are value neutral. But in the case of gene-technology (e.g. genetic tests) it is obvious that tests are developed for characteristics where a demand is expected for the use of the tests. And if test developers find there are have initial problems with the demand there are ways to increase the demand through one sided education over time (Down Syndrome is a classical example see below). Technologies are not value-neutral;  they usually embody the perspectives, purposes and particular objectives of powerful social groups.  The dominant ideology in western society proclaims that science and technology are value neutral and the only problems caused by technologies are either externalities (unintended side effects) or abuses. However because technologies are the results of human interventions into the otherwise natural progression of activities they are themselves actually imbued with intentions and purposes. Current technologies do not equally benefit all segments off society and indeed are not intended to do so, although to maximize public support for these developments and to minimize potential opposition their proponents rarely acknowledge these distributional ramifications.  Thus, technologies themselves are not neutral; they are social and political phenomena. Genetic technologies and exhibit these characteristics and reflect our differentials in our society. And bio/genetechnology will effect many Canadians. As a report (Priorities for Genetic Services in New Zealand) to the National advisory committee on Core Health and Disability Support Services 1995 states;

"New Zealand genetic disorders whilst individually rare constitute a significant contribution to morbidity and mortality when taken together as a group. Two to three percent of couples are at high and recurrent risk of having a child with an  inheritable disorder. 5 percent of the overall population will develop a genetic disease by the age of 25. If  conditions with a genetic predisposition like diabetes, coronary artery disease, cancer are included than it has been estimated that about 60 percent of the population will be affected doing their lifetime. (Ref 1)

This little blurb from New Zealand highlights already some of the problems and the scope of how genetechnology will change the face of health care delivery. The potential for abuse is immense and can easily outweighed the positive points if we are not careful.

Below we address the following points;
1) The eugenic use of genetechnology by society
2) Education on genetics
3) The need for legal reform
4) The discrepancy between reality and media hype set expectations (e.g.
in gene therapy

THE EUGENIC USE OF GENETECHNOLOGY BY SOCIETY

According to the  Oxford Dictionary "eugenics is the science of improving the population by control of inherited qualities". What does this definition mean? It means

1) that eugenics is not associated with a cell, a zygote, an embryo, a fetus, a person, a human being or mankind. It is associated with a characteristic of a cell, a zygote, an embryo, a fetus, a person, a human being ( newborn, toddler, child, adult,  elderly) mankind. 

2)  that prefertilisation diagnostic, preimplantation diagnostic, prenatal testing, post natal testing, mercy killing, involuntary euthanasia or non voluntary euthanasia are techniques which can be used in an eugenics fashion.

3) that eugenics is happening all the time around the world. We discriminate against and eliminate unwanted characteristics (whether they are inherited or not) all the time. We make choices all the time in favour of a characteristic or against a characteristic. With genetechnology the scope from which characteristic I can choose now is increasing.

How does society decides for which characteristics the use of eugenic measurements are permissible? One characteristic of the target group for elimination is that their characteristic is viewed in a negative way. Their characteristic is devalued and associated with the thought that  their characteristic is a burden to society and ensures a low quality of life to the carrier of this characteristic.

In India and China the label disability and female is viewed as negative and therefore the widespread practice exist in India and China to eliminate the characteristic disability and female.

In Canada and most other countries disability but not female is viewed as such therefore in these countries the widespread practice exist to detect and if possible to eliminate the characteristic disability e.g. Down syndrome but not female.

The following quotes show that the eugenic threat against the characteristic disability is very real.

1) Dr. Margaret Thompson order of Canada member and former president of the genetics society of Canada said as the defending witness for the Alberta government in the Leilani Muir sterilisation case "some causes off mental effectiveness are hereditary and when the eugenics board was created there was a real danger of passing on those causes because contraceptive choices were limited. Today, people at risk off inheriting or passing on a defect to their children have the pill and other contraceptives available. They can seek genetic counselling before a child is born and can abort a child likely to be defective."(Ref,12)

2) Eike Kluge a professor of bioethics at the University of Victoria and a member of the BC governments special advisory committee on ethical issues is cited   "it can be socially responsible not to bring a child into the world who is fated to suffer terrible from a genetic disease (Ref 18)

3) The eugenic face of Bill C. 47. Government of Canada Prohibited activities 4h) use any medical procedure for the purpose of ensuring or increasing the probability that a zygote or embryo will be of particular sex except for reasons related to the health of the zygote or embryo. 4i) use any diagnostic procedure for the purpose of ascertaining the sex of a zygote embryo or foetus except for reasons related to its health.

4) In "New reproductive and genetic technologies setting boundaries enhancing health, appendix A, a government of  Canada paper, accompanying Bill C. 47 the prohibition of sex selection is defended by saying it is "a) contrary to Canadian value  of equality and respects for human life and dignity and b) a form of sex discrimination"

5) the point of 4) was first put forward as a recommendation by the Canadian Royal commission Report on New Reproductive technologies.

6)  There is nothing wrong with eugenics said Dr. F. Clark Fraser founder of the genetics clinic at Montreal Children's Hospital not long ago in an unusually bland interview with the Montreal Gazette (ref 5)

7) In the UK the British Medical Association recently condemned reproductive techniques which can assure to 90% a certain sex of the fetus. They said that it is unethical to assure a certain sex for the fetus. The only reason where this would be not unethical is if a disease can be prevented. And they used than haemophilia as an example.(Ref 19)

8) The US noble laureate Joshua Lederberg (and one time adviser to Cetus Corporation) said in 1970 in front of the US. House of Representatives that 25 percent of all hospital beds and institution places are filled with patients whose illness was more or less genetic in origin. These numbers would increase as environmental pollution would increase over time the genetic burden. Therefore as the most important ad hoc action prenatal diagnostic combination with selective abortion has to be advanced. (Ref 14)

9) Francis Crick another Nobel laureate  said at the Ciba-Geigy Symposium in London UK in 1962 " we have to take away from humans in the long run their reproductive autonomy as the only way to guarantee the advancement of mankind.(Ref 15)

10) Dame Mary Warnock chair of the Warnock committee the English equivalent to the Canadian Royal commission report on new reproductive technologies "years ago she (Warnock) told me her father-in-law a doctor used to smother at birth hopelessly handicapped babies.  She mourns the loss of such practices.  That was right doctors were bold enough to take the decision but now it all has to be so cooperative. With Down syndrome children she thinks abortion the wiser course. They live much longer now and turn into very unhappy grown-ups. As soon as you say said you are up against the handicapped lobby who points  out wonderful children but there always talk about children. A friend of mine has an older Down syndrome daughter and he says she is a pig simply horrible and violent"..."If a child is born very disabled or premature I would much rather it was killed given a massive injection than allowed to die of dehydration. (Ref 13)

11) Helga Kuhse (Professor Monash university Melbourne Australia) "failing to offer the methods to avoid the birth of severely handicapped children required moral justification" (Ref 23)

12) chapter 5 page 8 of Assessing Genetic Risks 1993 Institute of Medicine "The potential for manipulation or control direction of human reproduction is also implicit in genetic testing. The public needs to understand that testing for genetic conditions raises value judgments about what is normal versus what is abnormal-- and that the social and illegal acceptance of such judgments can create the pressure for genetic conformity. The concept of genetic conformity may not only result in disease prevention but also produce an intolerance of ethnic and racial populations " (Ref 2)

13) page 6; ibid "the committee believes that offering prenatal diagnosis is the appropriate standard of care in circumstances associated with increased risk of carrying a fetus with a diagnosable genetic disorder including the increased risk associated with advanced maternal age. However the committee was concerned about the use of prenatal diagnosis for identification of trivial  characteristics or conditions.  It was the consensus of the committee that prenatal diagnosis should only be offered for the diagnosis of genetic disorders and birth defects.  The committee felt strongly that the use of fetal diagnosis for determination of fetal sex and the subsequent use of abortion for the purpose of preferential selection off the sex off the fetus is a misuse of genetic services that is inappropriate and should be discouraged by health professionals. More broadly reproductive genetic services should not be used to pursue eugenic goals but should be aimed at increasing individual control over reproductive options." (Ref 2)

14) Page 21 ibid "some people with disabilities would resist any expansion of genetic testing. The committee recognizes the weight of these concerns and urges broad public education to dispel myths about people with disabilities genetic are otherwise and to reduce barriers to their participation in society. The committee rejects the notion of restricting any expansion based on the concerns of people with disabilities that the technologies are inherently harmful. Such a restriction would undermine individual autonomy as much as the view that people should be urged or forced to use genetic tests and abortion to prevent disabilities nevertheless the concerns of people with disabilities are critical ones for our society. The committee is concerned that society may be moving closer to adopting the view that people to the urged or forced to use genetic tests and abortion to prevent disabilities; steps must be taken to counteract this tendency by decreasing pressures to test and increasing education and understanding off disabilities if testing becomes widespread efforts to urge people to undergo genetic testing might engender a greater intolerance for persons with disabilities even though most disabilities are not the result of genetic causes.  Avoiding the social pitfalls off intolerance based on genetic testing will require continuing vigilance" (Ref 2)

15) Testifying before Congress in  spring of 1990 Arkansas state health director Jocelyn Elders took  an unusual tack in her defence of legal abortion. "Abortion" she said "has had an important and positive public health effects in that it has reduced the number off children afflicted with severe defects". As evidence the future surgeon general cited this statistic; the number Downs syndrome infants in Washington state in 1976 was 64 percent lower than it would have been without legal abortion. (Ref 5)

16) During the last decades there has been little change in public opinion regarding the morality of abortion. Americans are almost evenly divided on this issue with 44 percent to 54 percent opposing and 39-47 percent advocating abortion. Public opinion shifts dramatically however when it is believed that the fetus will be born with a defect. Even persons who otherwise describes themselves as pro-life advocates may make an exception based on the health (normality) of the fetus, as in the case of Down Syndrome (ref 9) In the case of a fetus with Down syndrome 78 percent believed that abortion should be legal.(Ref 27) Hershey asserted that although prenatal testing appears to empower women because it allows for reproductive choices it is actually asking women to ratify social prejudices.(Ref 6)

17) Once a fetus is diagnosed with trisomy the laws regarding abortions change.  Ordinarily the stage of fetal development is an essential factor in whether or not a woman caring a healthy fetus can obtain a legal abortion. In a pregnancy that involves a fetus with down syndrome however woman may obtain a therapeutic or medically necessary abortion much later even after viability. The intentional termination of pregnancy for reasons of medical necessity is called a therapeutic abortion. Medically necessity has not being a universally defined by is left to the discretion of individual physicians.  Although the trimester approach is the constitutional yardstick for when fetal rights attach legally unrestricted abortion of the fetus with defects are available in several states involved the second an even third trimester.  By statute the following states have made previability abortion by language specifically addressing genetic deformity; Colorado Delaware Idaho Kansas Maryland New Hampshire New Mexico Pennsylvania Texas and Utah.  Third trimester abortions are statutorily admitted by Belize involve genetic defect in at least six states; Idaho, Kansas Maryland New Hampshire Texas and Utah.  States O'Malley as to holiday in pregnancy a post viable therapeutic abortion may be obtained. Kansas permits abortion up to 30 weeks  and in Colorado there is no legal limit. (Ref 4)

18) The latest US survey of members of support groups for people or their relatives with genetic disorders has found that 43 percent of those surveyed had experienced genetic discrimination. (Ref 18)

19) The abortion time limit in the UK is around 24th. Week if the fetus is without defect; if there is a defect than there is no timelimit.

20) Genetic testing may make possible the early detecton of certain inherited diseases for which there could be treatment. Would you personally want to take such a test? Yes 75%; No20% Genetic testing may make possible the early detection of cetain inherited diseases for which there is NO treatment or cure. Would you want to take such a test? Yes 64%; No 32% (Ref 22)

Many quotes above promote a cultural concept of eugenics with disability being the target in Canada and in other countries Interestingly Quotes 3-5,7,13 make a distinction between the characteristic sex and disability.

If this position is to be maintained it would be a strong indication that in Canada

a) a shift from the concept of personal eugenics to a concept of societal eugenics is taking place. We would have a society which functions on eugenic principles meaning that society/ the government decides which characteristic is to be allowed to live and which isn't. 

b) we abolish the principle of free choice for women in regard to their pregnancy and substitute this principle with the principle of society sanctioned free choice (as society/ the law will condone the use of the technology for disability selection but not for sex selection).

The disability rights movement is still fighting the discrimination against disabled people  and we will be adamantly oppose any law put in place to regulate bio/genetechnology that will discriminate against the characteristic disability. We have as much or as little right to live than the characteristic sex or sexual orientation or others.  We believe that the Canadian government and Health Canada are ill advised if they maintain the stand as proposed in bill c-47 (see above). A bill such as bill c-47  will be challenged in the courts as it is based on the discriminatory approach as to what information women can use and act on and on what information they can't act on. This discriminatory approach would contradict the "equal protection in front of the law" passage of the Charter and the principle of freedom of choice just to name two problems.

The message that we take from the above is that there will be no way that a law can be designed which will allow genetic testing for some characteristics and not for others. If a gay gene is ever found there will be no way to prevent abortion based on that parents don't want a gay kid. The only protection available will be that we will have a society where it is not viewed as a disaster to have the characteristic gay. But that also means we need a society which does not view the characteristic of not having legs or some other type of disability as a disaster or viewing disability in general as a disaster. We need a society which recognizes that there is place for every one and that we the members of any given society should support each others. That is the only protection in the long run against genism (as in racism, sexism and able-ism) . And this is very important taken into account that according to the estimate of the New Zealand document quoted above  in the end 60% of society can become targets.

But beside the discriminatory nature of a distinction between sex and disability selection there are other arguments which show that a distinction between characteristics is untenable.

One other argument which is used to justify the difference between sex and disability selection is that disabled people are a burden women are not! If this is a valid point than we have to condone female abortion and infanticide in India for example as many families perceive female offsprings as a burden. This might not be an objective view. Indeed it is based on the societal circumstances that females are viewed as a burden but the same is true in Canada for disability. With a caring and sharing society most disabilities would not be viewed as a burden. We even have to go further. We have to ask ourselves; what constitutes a burden? Is it dependency of a person? Is it emotional adjustments? Every person will define burden differently. In essence everything I don't value I mostly will see as a burden. And that means that many people will view having a gay kid as a burden to their lives or even having a girl.  Burden means that you expect a society an individual to do something they don't see as self evident. Therefore to use the burden argument to justify a selective approach towards characteristics is untenable. Another argument put forward  is that we have to take into account the societal consequences and that society can't afford sex selection with the possible option of abortion as this might lead to an unbalance in the gender rate in a society. And as women are still viewed more negative than men in Canada and around the world and are still disadvantaged we would see an increase in preference for man being born leading to a gender unbalance. Patricia Baird the head of the former Royal Commission on New Reproductive Technologies is often using  this argument. This argument has at least three flaws. A) If women need special protection due to that they are devalued than disability needs it even more ( Most people would agree that we the disabled are even more devalued). B) if the societal consequences have to be taken into account than yes we have a state regulated eugenic program which would denounce  individual rights.   And  C) that argument would protect sex ( as sex is the only characteristic which can lead to a sex unbalance)  but not characteristics such as sexual orientation for example if a gene is ever found, as society can live without gay/lesbians just fine  (the same is true for disability of course). Therefore this argument leads again to societal cultural eugenics and the abolishment of individual rights.

Another argument is that we use the disability selection to prevent a life from being born which just would be of low quality life and suffering. Let's examine this argument for three characteristics

A) Down syndrome. B)dwarfism and C) sexual orientation.

A) DOWN SYNDROME
Unlike many other genetic anomalous Down syndrome is not a terminal disorder. Off 22,000 women who received prenatal diagnosis in one 1990 study in Canada 88 percent of those who found they were carrying a child with downs syndrome aborted the fetus (ref 4). In 1959 French geneticist Jerome Lejeune discovered that people with down syndrome have an extra chromosome responsible for the disorder. The discovery soon made possible to detect the presence of Down syndrome in utero. By the summer of 1967 the American Medical Association had passed a resolution endorsing abortion in cases in which "an infant may be born with incapacitated physical deformities or mental deficiency" (ref 4). A year later the American College of Obstetricians and Gynaecologists came out with a similar policy (Ref 4).  A number of states years before Roe v Wade followed suit with laws allowing abortion for the purpose of eliminating children with mental defects including Down syndrome.  In 1986 the state of California began requiring physicians to offer the tests to pregnant women.  In 1995 the American College of Obstetricans and Gynaecologists   officially recommended Downs syndrome screening for all pregnant women (ref 4). Prenatal screening is now in effect mandatory. Lewis Holmes professor of pediatrics at Harvard Medical School who works at Massachusetts general hospital said that in his experience of women who learn they are carrying a Down syndrome child 90 percent will say they want to terminate(ref 4).  Far fewer than 90 percent of women support abortion at least in the abstract so there is some question as to why  so many are choosing it when they find they are carrying children with Down Syndrome. One study conducted by the Canadian Royal commissions on new reproductive technologies found that because of pressure from hospital staff 1 in four pregnant women felt obliged to undergo amniocentesis (ref 4). Of those who tested positive for a birth defect one in three believed she was more or less forced to have an abortion (ref 4).  Why such eagerness to prevent down syndrome children from being born?. Some proponents of selective abortion believe that this procedure indeed results in benefits to the fetus, family, and society because the quality of life of an individual with a disability will be so impoverished that termination is preferable.  These advocates believe that families benefits in that they will not suffer the emotional and economic stress and demands that accompany rearing a child with a disability.  Although society in general  may consider the birth of children with Down syndrome to be burdensome most mothers of such children do not agree.  Elkins et al (ref 9)  found that over 70 percent of mothers off children with down syndrome indicated that their marriage and the family had been brought closer together 84 percent described the experience as rewarding overall.  And now what is the target him/herself saying? The desire of suicide by Down Syndrome people or desire in their parts to be dead is if lower than within the average ablebodied population. Obviously the perception of society and the argument of prevention of suffering does not hold and is a false argument if there is no indication by the living members with this characteristic that they are suffering. Therefore also the argument of suffering and low quality of life is an argument based on the desire of society to avoid being burdened with Down Syndrome and therefore is a societal concept of eugenics.

B) DWARFISM
The little people as for example the USA people with dwarfism call themselves do not feel they are suffering either. They feel there is nothing wrong with being short. For them this is a lifestyle and they for the most part even refuse to identify themselves as disabled (the medical model) as they feel there
is no reason to FIX being short. There are sometimes medical problems within the little people community and these they would like to remedy but so do NOT-little people. So again from the characteristic point of view the suffering argument doesn't fly.

But what is the societal reality?  How does society deal with the fact that certain forms of achondroplasia are detectable.   Many little people feel pressured by the medical profession to not have a child which will have the genetic characteristic of dwarfism. An increasing amount of NOT little people ask for the test to avoid having a child  with the genetic characteristics of dwarfism (here you have to keep in mind that 80% of dwarfism is based on spontaneous mutations therefore without a preference in the family.  Dwarfism is used in some abortion clinics as an example of a severe disability and as a reasoning to defend and explain the usefulness of abortion (ref 17). Again it seems that the genetic test is not a reflection of the target's desire but a reflection of societal prejudice.

C) SEXUAL ORIENTATION
Or what would happen if we can test for sexual orientation? James Watson another Nobel Laureate and first director of the human genome project is on record (Sunday Telegraph Feb 1997)) saying that a women should have the right to abort if she doesn't want a gay kid. The gay community was of course outraged "It is as morally unacceptable to sugest the abortion of gay babies as it is to say that Nazis were right to propose the sterilisation of so called inferior races," Tasmanian Gay and Lesbians Rights spokeman Rodney Croome said (ref 24) but following the logic from above and the free choice concept there is no way that we could put a gay protection into law. It would be against the principle of individual rights and free choice. The scope what will happen to the fabric of society is immense.  If you are "in" than you are fine. You are not "in" gee you are in trouble.

Increasingly people with a not mainstream sexual orientation are coming into the open as they view themselves as just a different form of living regarding the choices they make regarding relationships and sex. BUT again society as a whole still harbours deep resentment and uneasiness regarding these choices. Most parents would rather have kids which are mainstream in regards to their sexual orientation. You move away from Canada to other countries you will find an even bigger prejudice against this group. So it seems again it is societal prejudice and intolerance who would drive the use of the test not the demand by the target group. Now let's look at the argument of suffering and burden. For the most part you will not hear from people with not mainstream sexual orientation that they are suffering because of their sexual orientation. You will hear that they are suffering because of societal prejudice and non acceptance of their lifestyle. But if suffering prevention is a valid reason than indeed it has to include sexual orientation and not just traditional disabilities in the scope of testing. If you look at the burden argument we will have to recognize that many people will view a non mainstream sexual orientation kid as a burden. They will have a hard time to accept this characteristic and if they can ovoid this emotional ordeal and the emotional burden they would choose to abort. So if burden is an acceptable concept than again sexual orientation has to be added to the tests which have to be allowed. Schuelenk et al. write   " research into sexual orientation - simplistically referred to as 'gay gene' research- is a example of research that provokes intense controversy..... But there are other reasons to worry about such research. The very motivation for seeking an "origin" of homosexuality reveals homophobic. Moreover, such research may mead to prenatal tests that claim to predict for homosexuality. For homosexual people who live in countries with no legal protection these dangers are particular dangerous" (ref 25). Following the argument of Schulenk et al, the research into the genetic origin of disabilities reveals disabilityphoby. And the danger for us is as realistic than for the target of gay gene research. From the above it becomes clear that you can't separate between characteristics and therefore indeed the danger is profound for every characteristic which does see itself not accepted. And this means different characteristics will be targeted in different countries.

Down Syndrome is only one characteristics which was used to establish a concept as Down Syndrome is so devalued in societ that it was easy to gain sympathy for the concept of selective termination of a characteristic. But as the above illustrates it can't be limited to Down Syndrome and not even to disease or disability. And indeed the acceptance of the procedure for other disabilities followed suit.

Surveys of physicians from France show that even disabilities like haemophilia or dwarfism are targeted for termination through second and third trimester abortion( the numbers represent the believe that the foetus with the characteristic should be aborted).

                     terminated second      third trimester

cystic fibrosis       70%                     54%

haemophilia           41%                     23%

spina bifida          86%                     78%

sickle cell           55%                     39%
anaemia

Limb reduction        43%                     26%

trisomy 21            91%                     78%
(Down Syndriome)

Dwarfism              63%                     48%

(Ref 21)

Numbers about what physicians in Quebec think about selective abortion are the following. for abortion     Anglophones in Quebec  Francophone in Quebec

75-100%             trisomy 21
                    muscular dystrophy
                    huntington disease

66-74%              cystic fibrosis          trisomy 21


60-65%                                             huntington disease

        cystic fibrosis


30-59%        phenylketonuria                muscular dystrophy
                    spina bifida                       spina bifida
                    heart defect                      heart defect
                    lobster claw defect          
                                                           

below 30%           sex selection            phenylketonuria
                                                            lobster claw
defect

                                                            sex selection

(Ref 21)

In that survey it is also mentioned that there is an above 30% consensus for abortion of a fetus which contains the possibility of developing a disability such as Alzheimer or Schizophrenia.(ref 21) Other studies show for example a 60-70% acceptance rate of abortion of blindness can be prevente (ref 3).

At a conference on 13th of February 1998  Bob Williamson director of the Murdoch Institute for research into Birth defects in  Melbourne and professor of medical genetics University of Melbourne said "We have to realize that most people in my experience have fairly clear views on what level of disability appears to them to be consistent with worthwhile outcome to themselves.  I am actually irritated if people say everyone thinks that condition  is so bad that we should have prenatal diagnosis and termination of pregnancy but condition y e.g, cleft palate isn't bad enough. The truth is you can't say that in terms of a condition you can only say it in terms of a woman of her family her perceptions her social context economic context and everything else and for some people cleft palate will be something they will be at ease with but for other people it will not be. The same is true for Down syndrome . We must avoid categorizing diseases as severe or not severe. This can only be seen in the context over the overall holistic situation of a family and individuals. "(ref 20)

Now if we follow Bob Williamson logic haemophilia has to be included and juvenile diabetes and any characteristic (e.g. sexual orientation) essentially the family feels uneasy  about.

A former Dental supply company has announced plans to sell predictive genetic tests for three serious late onset medical diseases as well as periodontal disease. The California company now called medical science systems recently filed a prospectus with the US Securities and Exchange Commission.  It intends to sell predictive susceptibility genetic tests for; periodontal disease osteoporosis Coronary artery disease diabetic retinopathy (ref 10). In extensive discussions of it plans for marketing sales and processing off tests in the company never once mentions any plans to utilize genetic counsellors or provide counselling to assist patients who must decide whether to be tested unfortunately there is no law in the US to stop this, or any other company from selling what it claims to be predictive genetic tests for any of hundreds of different diseases.

Diabetes related medical conditions are rampant within the indigenous people of Canada. Do we find ways of curing the medical condition or are we testing them now for the genetic condition and quality control them? Even this is not new. As Bob Williamson mentioned in his speech from 13.2.1998  "So for instance in Cyprus every person has to be screened before they can get married to find out their carrier status for thalassaemia." (Ref 20) Is this the future of our native community? In Cyprus we see the acceptance of a societal eugenic program. Will we get the same in Canada?

Now the disability community and may be also other characteristics in the future sees themselves even more in danger than just through the termination before birth. We see that increasingly we have to justify why we don't want to die and have to defend our lives.  A survey of women in France showed that the agreement with the induced abortion of a severely malformed fetus is at 90% agreement for the first trimester; 73% for the second trimester; 56% for the third trimester; and the euthanasia of a malformed newborn child 52%.(ref 21) The result of this survey is very disconcerting as it provides a link to that once you accept the termination of a characteristic through prebirth techniques that the trend goes on to terminate the disabilities after birth which are not detectable before birth (infanticide). And it is not just these french women who make the link between abortion of a disabled fetus and termination of the life of a disabled newborn. Peter Singer a Australian professor of  bioethics has written in his book from 1979 "Practical ethics" that it is morally okay to kill a newborn disabled for example haemophilia if the mother for example would by that get another chance of giving birth to a healthy baby. In 1979 there was no prenatal testing available. Today you can get rid of haemophilia in a much cleaner way (see proposal of bill c-47). Peter Singer is also very clear in his book "Rethinking life and death" (1995) that time boundaries in dealing with a label a characteristic are arbitrary, not logical and up to changes and that the only measurement on how to deal with a label should be the quality of life to be expected.  And some abortion laws in the USA (see quote 18) reflect this view. The  abortion law after Roe v Wade is linked to the viability of the fetus as a boundary for the legalization of abortion (ref 8). And many state laws reflect that view for non defect foetuses but if the foetus shows a defect abortion is often allowed past the viability of the foetus. The same is true for the UK (quote 19) .

If we as a society believe that the label disability is equal to low quality of life and a burden to society only under that assumption it is understandable that we push for termination at  every stage of human development.

Why would the characteristic disability cause eugenic procedures in Canada?

The above are all manifestation of a devaluation of disability.

Today we monitor the "health?" of our population at every stage of life; in the test tube with the help of prefertilisation and preimplantation technology, in the womb with the help of prenatal testing and after birth towards our death. And this monitoring leads increasingly to the termination of the incurable disability, the incurable  genetic "defect" through non selection of the "defect" cell or the abortion of the disabled fetus. It also leads to the termination of treatments of newborn and older disabled the killing of disabled (mercy killing)  and the increasing demand for physician assisted suicide. In Canada it is obvious that the carrier of the characteristic disability is much more devalued than the carrier of the label male or female (see above). In the eyes of Canadien society disabled are suffering. Females or males per se not.  Therefore there is a compassionate ;-] reason to abort the fetus who will be disabled but not the female or male. But if we allow the concept of cultural eugenics in Canada than why are people are so appalled by the cultural eugenic of females in India? Why do we point the finger at the sex selection practice in India but do not see our behaviour of disability selection? Do we not see that the female in India is in the same position than the disabled around the world? The economical and other problems associated with giving birth to a female in India is only a result of the devaluation of females in East Indian society. Western societies are slaves to the words "healthy, normal, self reliant, productive" which leads to the devaluation of disabled people and the perception that disabled people have a low quality of life.

All the above seems to runs contra to what  the  Code of conduct for research involving humans by medical research council of Canada, the  natural science and engineering research council of Canada and the  social science and humanities research council of Canada March 1996 in article 15.6 suggests "the aim of genetic research should be the advancement of knowledge or the amelioration of disease not the improvement or enhancement of a population. The aim of genetic research  should be to better understand the human genome genetic disease and the genetic contribution to health and disease as well as helping individuals and families with genetic conditions. Care must be taken to avoid targeting  specific populations such that feel stigmatized by the genetic disorder or  targeted for improvement. The rights and freedoms attached to relationships and reproduction and the support of those with handicap conditions are to be maintained. The consideration of the improvement or enhancement of individual or populations made encourage intolerance of human diversity. The importance of seeking informed consent in an  interactive way from the individual the family or the collectivity as appropriate so as to avoid real or perceived eugenic goals must be re-emphasized."

Knowing all the above we feel that our concerns are not taken seriously and are not reflected in the consultation documents Instead we read "comprehensive genetic testing during pre- and post natal developmental stages as well as the complete lifespan should be address" And than nothing! No hint how it should be addressed.

B) Postnatal testing
Now logically if we believe in prebirth detection systems for the good of the characteristic than there is no logical reason why the same testing procedure should not be employed after birth. In essence postnatal testing will only be an issue as long as we still develop new tests. Once we have the tests available the testing will be shifted after one generation to the prebirth stage. Those who have been born do not have to be tested anymore as they were tested already before birth. In our view there is no special problem attached to post natal testing. Genetic discrimination will and is happening as soon as you test and as soon the information is available. It doesn't matter whether the information was collected prebirth or after. There are many areas of potential genetic discrimination (see below). But the main genetic discrimination is based on the fact that society judges characteristics as worthwhile or not. And if this judgement is just prenatal and postnatal by society as a whole than it is hard to say to an insurance company or employment agency or health care provider that they can't discriminate.  Another problem will arise in that many parents will have difficulties  to deal with their kid knowing it has a certain condition which might develop later on in life (again this problem will arise independent of the time of screening). Although this information might have some value to the kid regarding treatments it might destroy the acceptance of the kid by the parent . Let's  just remember the difficulties parents had in raising and accepting their thalidomide babies.  Another problem of course is how does society deal with the kids who are known to carry a devalued characteristic. Just one example. If a person is up for adoption do we tell the prospective parents the results of pre or postnatal screening? It doesn't matter whether a characteristic was detected pre or postnatal. The problem is do we give the parents access to this information? Quote from Assessing genetic risks 1993 "there is agreement that information regarding carrier status of a medically innocuous genetic trait should not be used to discriminate against a child being considered for adoption. However once a disease has been diagnosed or if there is a high-risk off a medically significant condition I believe strongly that prospective adoptive parents should be provided this information (Anno G. Motulsky Chair)"

The questions asked should be; How can we prevent that we have an obligation to use available tests for defects whether before or after birth. How can we be ensure that insurance company will not use the abilities accompanying biotechnology to demands from parents to perform these tests. We are definitely in danger of developing a sub class of humans called genetic positive. For them it is especially important to have laws preventing genetic discrimination.

Education. on Gene Technology
Let's give the word to the Committee on Assessing genetic Risk; Division of Health Science Policy, Institute of Medicine USA.  1993, P. 11 "the committee believes said genetic literacy is essential to individual and public empowerment for understanding not only ourselves but our relationships our families our communities and the world.  In contrast to most health behaviour strategies the committee recommends that the goal of genetic health education not be to elicit any particular behavioural but rather
to produce informed decision-makers by providing genetics knowledge to increase options help people make informed choices and promote an appreciation and acceptance of human variation and differences.  The committee recommends more analysis of the implications of applying concept of public health education to genetics including analysis off what has been learned from the concepts off the health believe model and the social cognitive theory in relation to health related decision-making in genetics. The committee therefore recommends that specific funding be devoted to ensure that all school children receive sufficient education in genetics to enable them to make informed decisions as adults.  The committee recommends that systematic genetics education begin in elementary school and be continued throughout formal education" (ref 2)

Chapter 6 p. 1 "historically genetic tests have been administered and interpreted by highly trained health professionals working in academic health settings usually with a strong genetics research and service record. In the future however genetic tests will become available for a growing variety of monogenic and complex diseases and for susceptibility to more common disorders such as breast, colon and other cancers. Testing on such a broad scale well necessarily will move us beyond the models of service delivery and professional roles that have characterized genetic testing and screening in the past. Increasingly genetic test will be offered and interpreted within the context of the mainstream of medicine in primary care practice-including pediatrics, obstetrics, internal medicine and family practice in a variety of individual and group practice settings." (Ref 2)

CCD would like to add just the following. We are on record with the Canadian UNESCO delegation in conjunction with the UNESCO declaration on the Human Genome with the following demands

1) The government should provide money to the stakeholders in the biotechnology debate so that they can inform and educate their clientele. In our case that would be other disabled people and the able-bodied world. In the moment there are only very few of us who have an understanding of the matter.

2)Education should indeed start in schools and  should include disabled people as tutors. Who better than the target of termination to talk about the importance of genetic diversification.

3) Money should be set aside to fund Internet courses on these issues and disabled people should be part of the development process of such courses.

4) In the moment there is no standard in genetic counselling in this country and we need standards for that preferable through a credit course at universities again with the involvement of disabled people as tutors.

5) Education of the Media about the realism of biotechnology and the more balanced set up of stories involving all stakeholders in this issue.

In addition we would like to voice our dismay to the information we received that the Canadian counterpart of the USA ELSI program was abolished. Although the disability community wasn't involved with it (to our dismay )to abolish the program is even worth

3) Gene therapy
The health sector Consultation Document (Renewal of the Biotechnology strategy) talks about the potential usefulness of gene therapy. Interestingly the part in the document seems to focus on somatic gene therapy versus germline gene therapy.  We would like to caution the government about the potential usefulness of gene therapy. One of the points of the more broader set of consultations of the Canadian Biotechnology Task Force was the recognition that the expectations regarding biotechnology often was not reflected in reality. We believe to a great extend this is due to the sensationalism in the media and the need for biotechnology companies to attract money which leads to the development that the reality is often far removed from the expectations. Gene therapy is one of these cases. To make it clear. Up to today to our knowledge not one case of gene therapy trial has worked. The successful treatment of SCIDS (Severe Combined Immunodeficiency Syndrome), or "bubble boy syndrome" has been used  as a demonstration of the potentially great value of somatic gene therapy especially and biotechnology generally. This claim is unjustified.

The SCIDS case is not a case of successful gene therapy. It is a case of biotechnology-aided therapy. Somatic gene therapy means treating a genetic disorder by inserting "better genes" into the somatic cells of the patient so that permanent normal functioning will be possible.

In the SCIDS case, a deficient gene in the lympocytes (white blood corpuscle) is the cause of the immunodeficiency. The therapy in question has been to take out lymphocytes and to insert a normal gene into them and then to reintroduce the bioengineered lymphocytes into the blood (more recently, bone marrow stemcells from which lympocytes are produced have also been used). Thereby a normalization of the immune functioning has been achieved, making it possible for patients to get out of the sterile plastic "bubbles" and lead normal lives.

However, as the lympocytes have a limited life time, this treatment has to be repeated regularly, otherwise the immunodeficient state will return. This means that gene therapy has failed in this disorder as well as in all other disorders. Successful gene therapy would mean the establishment of a line of normal bone marrow lymphocyte stem cells that would make the patient permanently independent of external infusions of lymphocytes.

This case has wrongly been claimed to prove that gene therapy may have important potential benefits. It represents, however, an extremely simple solution compared to gene therapy, and is only applicable in the very few cases where cells can be taken out of the body, treated and reintroduced. Real gene therapy, where malfunctioning organs would be normalized by insertion of normal genes is extremely difficult and will require very extensive knowledge of the particular cell type to be treated and of the particular disorder. An enormous amount of research and money is required in each case to provide sufficient knowledge to yield successful gene therapy - if possible at all.

The doubts are justified as the insertion of genes in somatic gene therapy of children or grown up people is associated with many potential complications and problems. Presently, it is impossible to direct the insertion of the gene. Viruses are used as carriers (vectors) and they insert the genes randomly. In somatic gene therapy, billions of genes are inserted. Therefore, there is a significant risk that some may become located in a position where they disturb or block the functioning of other genes. Most seriously, there is a risk that some may become inserted so that they activate a proto-oncogene (a gene that may initiate cancer)or other cancer-related genes increasing the risk for cancer development. Or the insertion may block or damage a tumor suppressor gene. So gene therapy confers a significant risk for cancer development and many other disturbances. Also, the viruses used as vectors may cause serious problems. For example, in the treatment attempts of Parkinsons disorder, Alzheimers disease and Cystic fibrosis, an adenovirus has been attempted which has caused severe immune reactions.

The insertion of more than one gene increases the difficulties and potential complications considerably. So it is generally agreed that gene therapy can only be considered in the case of monogenetic disorders, that constitute about one percent of all disorders.

However, recent research has revealed that even some of the disorders that formerly were believed to be single gene disorders, like cystic fibrosis, are quite complex genetically. So the number of single gene diseases may turn out to be even fewer than believed so far. Also, genetic research has accumulated considerable evidence indicating that the belief in a simple relation between a gene and its effects must be modified. The expression of genes is much more dependent on the totality of their environment than  what the mind set underlying biotechnology has recognized. The same gene may have different effects under different conditions and in different positions. Therefore, it is impossible to achieve any predictable and controllable effects by random insertion of genes as in gene therapy.

The claims that gene therapy may bring solutions to disorders caused by many different factors and several genes, such as alcoholism, cancer, depression, schizophrenia etc are obviously not in touch with reality. As said above to a great extend this hype is based on the media. But reality is no somatic gene therapy trial has worked yet and despite these problems we now hear that "Germline gene therapy is likely to become a reality within twenty years and should be welcomed. James Watson warned at a recent conference (March 1998 in Los Angeles USA) "the procedure could suffer from excessive regulation on either national or international levels and any international attempt to regulate germline engineering would be a complete disaster". The panellists at this conference almost unanimously argued that the potential for curing human disease presented by the incipient technology is so great that it should be implemented regardless of concern that its use might lead to an ethical morass and perhaps even to practices such as eugenics.  John Fletcher a bioethicist at the University of Virginia said "that references to the germline as a Rubicon not to be crossed and as being sanctified had been virtually enshrined in public policy. I think this symposium tended to dispute that premise".(ref 11)

Legal Reforms

1) Wrongful birth wrongful life suits
2) Health insurance life insurance discrimination
3) employment discrimination
4) Clarification on what is federal responsibility and what is provincial responsibility and what is the responsibility of the municipalities. After clarification of what level of government is responsible for what a coordinated effort should be developed to advance legislative changes on all three levels. Changes just on the federal level are not enough as many of the pitfalls and uncertainties for Canadians will be based on provincial responsibilities not federal responsibilities and for sure the change of attitude towards the target group of genetic intervention manifests itself on municipality level.

Draft International Convention on the humane genome accepted by the subcommittee of the International Bar Association (IBA) Oct. 1996

Article II
1. States Parties agree not to permit the performance of any act which directly or indirectly facilitates any eugenic practices using humane genome technology contrary to the principles established in the International Convention on the elimination of all Forms of racial discrimination of March 7. 1966

Article III Article 3 genomic information and pregnancy each state party shall take effective measures including legislation where appropriate a) to ensure that pressure based on genomic rationales is not brought upon any parent of an unborn child for a pregnancy to be terminated b) to proscribe as a ground for encouraging termination of pregnancy alleged congenital or otherwise gene related deficiencies based on any preconceived standard of normality c) to proscribe as a ground for encouraging termination off pregnancy genetic prediposition to illness which may be likely to occur in later life d) to impose no obligation up one person's within its jurisdiction to undergo genetic operations and to impose no financial or social consequences on persons who refused to undergo genetic operations

We would like to end this submission with a citation from a joint declaration of three subcommittees of the green party of Germany (Ref 26)

Genetests are increasingly used in the framework of prenatal diagnostic. They serve as tool to predict gene-defects within embryos. With that the rebirth selection of disability life is enhanced. Buendnis 90/Die gruene denounce such development. Pregnant women are burdened within the framework of prenatal diagnostic with the solution of a primarily societal problem.

References

1) Priorities for Genetic services in New Zealand; A report to the national Advisory Committee on core health and disability support services 1995

2) Assessing Genetic Risks; implications for health and social policy Committee on Assessing Genetic Risks Division of health Sciences policy Institute of Medicine National Academy press Washington D.C. 1993

3) Varp MS., Bombard, AT., Simpson, JL., Elias, S Parental decision following prenatal diagnosis of fetal chromosome abnormality. Am.J.Med.Genet. 1988; 29;613-622

4) Glover, NM., Glover, SJ., Ethical and Legal Issue Regarding elective Abortion of fetuses with Down Syndrome (1996) Mental Retardation, Vol 34;No.4 207 - 214

5) Carlson, Tucker; Eugenics, American Style; The Abortion of Dwn Syndrome Babies; The Weekly standard December 2, 1996

6) Hershey, L. (19954) Choosing disability. Ms. Magazine 5, 26-32

7) Henshaw, S.K., (1995) Factors hindering access to abortion services Family Planning Perspectives 27(2),54-59

8) Roe versus Wade, 410 USA 113 (1973)

9) Elkins, T.E., Stovall, T.G., Wilroy, S., and Dacus, J.V. (1986) Attitude of mothers of children with Down Syndrome concerning amniocentesis, abortion, and prenatal genetic counselling techniques. OBSTETRICS AND GYNECOLOGY 68; 181-184

10) http://www.sec.gov/Archives/edgar/data/1037649/0000892569-97-002786.txt

11) Nature 26 March 1998

12) Calgary Herald June 29th, 1995

13)New Stateman oct 25th. 1995

14) Joshua Lederberg, Biological Goal: Human Welfare in The New York Times 12.1.1970 see also Joshua Lederberg, Genetic engeneering and the amelioration of genetic defect in Bio-Science (1970), 20;1307-1310

15) Francis Crick in: Wolstenholme (Hg), Man and his future p. 274

16) survey by Virginia Lapham in SCIENCE

17) Associated press by  Traci Karl as distributed on a dwarfism newsgroup

18) In Globe and Mail 24.sept. 1997 By Alanna Mitchell

19) Times of london August 10. 1997

20) Bob Willioamson from a transcript of his speech

21)Prenatal Diagnosis (July/Aug 1993)

22) Rope Centre for Public Opinion research, Harris Poll, Hart and Teeter Research Companies,  April 1995

23)weekend Australien 18 Nov. 1995

24) AAP 17 Feb. 1997

25) Schuelenk U.,Stein E.,Kerin,J., and Byne, W., The Ethics of Genetic research on Sexual Orientation in Hastings Centre  Report27 No4 (1997) 6-13

26) Joint declaration of the gene-reproductive technology/the work health and social/the disability politic subcommittees of Buendniss 90/die Gruene 12.Oct. 1997 (Green party of Germany)

27)Blendon,RJ., Benson, JM., & Donelan, K., (1993) the public and the controversy over abortion; the journal of the American Medical Association 270,2871-2876

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