Science and the Disadvantaged

 

by
Dr. Gregor Wolbring
Research Scientist
Department of Biochemistry and Molecular Biology
Faculty of Medicine
and
Adjunct Assistant Professor
Department of Community Rehabilitation and Disability Studies
Faculty of Education
University of Calgary
Canada
e-mail: gwolbrin@ucalgary.ca

© 2000 Gregor Wolbring.

This essay is one in a series of essays meant to stimulate and inform discussion on the subject. The author invites readers to correspond with him directly if they have comments or questions about this essay.

 

I.S.B.N. 1-930169-12-4

an occasional paper of

The Edmonds Institute
20319-92nd Avenue West
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published with the help of grants from HKH Foundation, Funding Exchange, C.S. Fund, and Foundation for Deep Ecology and research assistance from Lisa Ferraro Parmalee (Senior Research Analyst, The Roper Center), Elizabeth Abergel (York University), and Dr. Anne Leitch.

 


 


Introduction


Science and technology are not value neutral. Advances in science and technology are often the results of human activity imbued with intention and purpose and embodying the perspectives, purposes and particular objectives of powerful social groups. Current technologies do not equally benefit all segments off society and are not meant to do so. To maximize public support for technological developments and to minimize opposition, technology proponents rarely acknowledge, for example, the distributional inequities and ramifications of what they are proposing.

Throughout history, science and technology have had profound impacts, positive and negative, on human kind. The field of bio/genetechnology research will be no different in this regard; it has the potential to fundamentally alter society and to affect many, many people. Bio/genetechnology has the potential to divide society into two classes: the genetic positive (“defect” positive) and the genetic negative . It also has the potential to prod us to exchange a "right to be healthy" - the basis of universal public healthcare coverage - for "no right to be unhealthy".

Thanks to bio/genetechnology, whenever it is detected that a human being is not measuring up to societal expectations, whether prior to birth or after, the "offending" human being will have his/her right to existence put at risk. Our propensity to judge each other based on characteristics we attribute to each other, fueled by the unraveling of the genetic code, will increase our potential for intolerance of human characteristics viewed as undesirable and preventable (especially if those characteristics require accommodation by the majority of society).

The potential for abuse of bio/genetechnology is immense and can easily outweigh the positive points if we are not careful. To prevent the negative impacts, safeguards should be put in place. It is of paramount importance that scientists be vigilant in monitoring the use of their results in any given society and stand up against unethical use of their research results. Consumers must be enabled to monitor and control the use of research results; they also must be involved in the development of policies concerning which research should be publicly funded and what safeguards are appropriate to prevent the misuse of research results.

So far, the debate about gene-technology has been very one-sided. The consumer is not much involved in debate and policy-making concerning the use of bio/genetechnology. And, for many of the most important ethical issues stemming from the research (e.g. eugenic use of bio/genetechnology), we don't have any societal safeguards in place.

To me, it seemed very timely when these issues came up in Budapest last summer (June 26 - July 1, 1999), at the World Conference on Science sponsored by UNESCO and ICSU (International Council of Scientific Unions). Convened twenty years after the last such meeting, participants at the Conference discussed, among other things, the future of the natural sciences and the role of science in society. At the end, delegates approved two policy papers: a declaration about science and a framework for action.

In the preamble of its Declaration on Science, the Conference noted:

1. We all live on the same planet and are part of the biosphere. We have come to recognize that we are in a situation of increasing interdependence, and that our future is intrinsically linked to the preservation of the global life-support systems and to the survival of all forms of life. The nations and the scientists of the world are called upon to acknowledge the urgency of using knowledge from all fields of science in a responsible manner to address human needs and aspirations without misusing this knowledge. We seek active collaboration across all the fields of scientific endeavor, i.e. the natural sciences such as the physical, earth and biological sciences, the biomedical and engineering sciences, and the social and human sciences.

2. While the Framework for Action emphasizes the promises, the dynamism but also the potential adverse effects that came with the natural sciences, and the need to understand their impact on and relations with society, the commitment to science, as well as the challenges and the responsibilities set out in this Declaration, pertain to all fields of the sciences. All cultures can contribute scientific knowledge of universal value. The sciences should be at the service of humanity as a whole, and should contribute to providing everyone with a deeper understanding of nature and society, a better quality of life and a sustainable and healthy environment for present and future generations.

3. In addition to their demonstrable benefits, the applications of scientific advances and the development and expansion of human activity... have contributed to social imbalance ...

4. Today, whilst unprecedented advances in the sciences are foreseen, there is need for a vigorous and informed democratic debate on the production and use of scientific knowledge. The scientific community and decision-makers should seek the strengthening of public trust and support for science through such a debate. Greater interdisciplinary efforts, involving both natural and social sciences, are a prerequisite for dealing with ethical, social, cultural, environmental, gender, economic and health issues.

5. Most of the benefits of science are unevenly distributed, as a result of structural asymmetries among countries, regions and social groups, and between the sexes. . . . . .

8. . . . In the twenty-first century science must become a shared asset benefiting all peoples on a basis of solidarity, that science is a powerful resource for understanding natural and social phenomena, and that its role promises to be even greater in the future as the growing complexity of the relationship between society and the environment is better understood,

12. . . .that scientific research is a major driving force in the field of health and social care and that making further use of scientific knowledge has great potential for improving the quality of health for humankind, . . .

20. . . .that some applications of science can be detrimental to individuals and society, the environment and human health, possibly even threatening the continuing existence of
the human species, . . .

22. . . . that we recognize the need to practice and apply the sciences in line with appropriate ethical requirements developed on the basis of an enhanced public debate,

23. . . . that the pursuit of science and use of scientific knowledge should respect and maintain life in all its diversity, as well as the life-support systems of our planet,

24. . . . that there is a historical imbalance in the participation of men and women in all science-related activities,

25. . . . that there are barriers which have precluded the full participation of other groups, of both sexes, including disabled people, indigenous peoples and ethnic minorities, hereafter referred to as
"disadvantaged groups". . .

In this paper I focus on those subgroups of the "disadvantaged" often labeled "the disabled". However, many of the points I raise are applicable to other disadvantaged groups, such as women, indigenous peoples, and ethnic minorities.

The Natural Sciences (biological/medical sciences) have enormous impact on the lives of the disabled, as, for example, in the influence those disciplines exert on public understanding of the meaning of disability. (2) Yet, “the disabled” have little impact on the Natural Sciences. They are virtually absent from the decision-making process that shapes the directions and policies of those sciences. They are not involved even in the bioethics debates, debates which are supposed to examine the societal impacts of the biological sciences and contribute to the decision-making over whether and how to use the results of advances in biological/medical sciences. In most countries, to be honest, there is very little public debate at all about bioethical issues and very little debate about the consequences of developments in biological/medical sciences. The public still has little, if any, idea about the broader scope of bioethical issues, about how the different issues may be linked together, how they may be affected by the resolution of those issues and how they might be able to protect themselves from the results of those debates. Insofar as the disabled are concerned, the bioethical debates of today are rather like the debates of women's issues around the beginning of the century, when men talked about women's health and graciously invited women (who were not too radical) to join the debate.

Today, even if we may talk about "disability" and discuss what to do with the carriers of the characteristic (i.e., the disabled), if we attempt to define "them" or reclassify them or debate their personhood or develop ethical/societal/moral frameworks that deal with them (and that may strip them of their rights), generally we have ensured their absence from our conversations. We usually justify our actions by saying that "they" are not objective, not logical, and are instead too emotionally involved. Clearly, this has to change. As in the debate about women's issues, where women became the speakers and decided whom they wanted to invite to the debate, in the same way, the groups affected by the bioethics debates must become the ones to shape the debate and name the participants in the discussion. And yet, in most countries, people who are defined by their particular "disability" continue to be ignored in the debate of such bioethical issues as euthanasia and gene technology. The euthanasia debate instead is shaped by the "right to die" and "pro life" forces and by professional bioethicists. The gene technology debate is shaped mostly by the medical profession and biotechnology industry bioethicists and, to a lesser extent, by bio/gene technology critics.

One of my hopes for the 1999 World Conference on Science was that its documents would reflect the above-described deficiencies and call for action to mend those shortcomings. From the preamble of its declaration on science, it appears that the goal was reached. It is instructive to know how the goal was reached and to look a little closer at what was achieved.

 

The road leading to the conference

My journey to the Conference started in 1998. I was invited to sit on an Advisory Committee of the Canadian Commission for UNESCO convened to comment on early versions of documents for the Conference. Looking around the table at the first meeting, I saw indigenous people, representatives for disability groups, one disabled person (myself), people concerned about women's issues , people concerned about how science might affect the environment/ sustainable development /the arctic /energy issues. I saw people representing the Academy of Science, the Royal Society of Canada, and the Natural Sciences and Engineering Research Council of Canada (NSERC). I saw government representatives from different departments and, of course, I saw the people from the Canadian Commission for UNESCO.

I really wasn't sure what to expect. I knew beforehand that whatever happened in Budapest would not be legally binding on any government. Countries would ignore what they didn't like. Nevertheless, I thought it worthwhile to try to shape the documents of the Conference. While a government might ignore a document , it might also use one.

Sitting on the advisory committee allowed me to look at the Conference's two policy papers at different stages of drafting. What quickly became obvious was the lack of mention of disadvantaged groups such as “the disabled”, ethnic minorities, and indigenous peoples. The only group specifically mentioned in the draft text was women; their lack of access to science was noted.

At every stage of the consultations, I pointed out that all people should have equal access to science. I noted that focusing on one characteristic ("female") implied that those who possess that characteristic deserve greater recognition of their problems than people of other characteristics facing similar problems. Granted, there are unique aspects to the experience of women, but there are also unique aspects of the experience of “the disabled”, of indigenous peoples or of any ethnic minority.

Despite some persistence, and I was persistent, every new draft still had the same problem (although my comments were part of the Canadian response to various drafts). While some country position papers did look at women's access to science and some satellite meetings before the Budapest Conference did examine the issue of Women in Science, only the Canadian group looked at the issue of access to science in terms of disabled people.

When I heard that I was to be part of the official Canadian delegation going to Budapest, I was stunned speechless (a rare condition for me ). Members of the delegation included the president of the Academy of Science, Royal Society of Canada; the president of the National Research Council of Canada; the president of the Natural Sciences and Engineering Research Council of Canada; the Associate Secretary-General Ministry of Research, Science and Technology, Government of Quebec; the Director, Division of Investment, Science and Technology, Department of Foreign Affairs and International Trades; a well known bioethicist; a person representing indigenous people; women who had attended the satellite meetings regarding Women in Science; and others. Our delegation reflected a broad view of science. Later, when I saw the other delegations to the Budapest meeting, it became clear that the Canadian delegation was one of most diverse of the group, if not the most diverse.

 

The Conference

From the outset, there were problems at the Conference. Some of those problems might have been solved beforehand, had someone thought about it. For example, the Conference session on biology and health, assigned to the fourth floor of a building without an elevator, could have been held in a wheelchair accessible venue. There are some in Budapest. Apparently, the Conference organizers did not expect the attendance of someone like me. I use a wheelchair. Had there been delegates who were blind or deaf, they too would have encountered problems. The Conference simply was not prepared for national delegates or NGO (non-governmental organization) representatives who were also members of the disability community .

There were other difficulties I could not help but notice, political difficulties. From the beginning of the conference to the final drafting of the documents, I found myself fighting with women fighting for women's issues. The women were adamant about not having disadvantaged groups other than women mentioned in the documents. Many of their statements and the statistics they quoted did not include reference to disabled women.

While it is true that women were only 25-30 % of the delegates, which is less than their percentage in society (45-55%), I was 1 of 1800 people at the Conference. I was the only one in attendance voicing concerns of disabled people. (3) I was so busy trying to prevent a discriminatory approach in the documents that I never found time to look at the scientific issues of the Conference. I am also a biochemist.

In the end, I did not regret what came to be my focus at the Conference. Issues pertinent to disadvantaged groups, including the disabled, appeared in many places in the documents: (4)

Quoting from sections of the Declaration on Science:

25. . . . . that there are barriers which have precluded the full participation of other groups, of both sexes, including disabled people, indigenous peoples and ethnic minorities, hereafter referred to as "disadvantaged groups". . .

34. Science education, in the broad sense, without discrimination and encompassing all levels and modalities is a fundamental prerequisite for democracy and for ensuring sustainable development. In recent years, worldwide measures have been undertaken to promote basic education for all. Special attention is still required for marginalized groups. It is more than ever necessary to develop and expand science literacy in all cultures and sectors of society as well as reasoning ability and skills and an appreciation of ethical values, so as to improve public participation in decision-making related to the application of new knowledge.

42. Equality in access to science is not only a social and ethical requirement for human development, but also a necessity for realizing the full potential of scientific communities worldwide and for orienting scientific progress towards meeting the needs of humankind. The difficulties encountered by women, constituting over half of the population in the world, in entering, pursuing and advancing in a career in the sciences and in participating in decision-making in science and technology should be addressed urgently. There is an equally urgent need to address the difficulties faced by disadvantaged groups which preclude their full and effective participation.

Quoting from the Science Agenda-Framework for Action:

17. Scientists, research institutions and learned scientific societies and other relevant non-governmental organizations should commit themselves to increased international collaboration including exchange of knowledge and expertise. Initiatives to facilitate access to scientific information sources by scientists and institutions in the developing countries should be especially encouraged and supported. Initiatives to fully incorporate women scientists and other disadvantaged groups from the South and North into scientific networks should be implemented. In this context efforts should be made to ensure that results of publicly funded research will be made accessible.

59. Governments should promote the further development or setting up of national statistical services capable of providing sound data, disaggregated by gender and disadvantaged groups, on science education and R&D activities that are necessary for effective S&T policy-making. Developing countries should be assisted in this respect by the international community, using the technical expertise of UNESCO and other international organizations.

79. The full participation of disadvantaged groups in all aspects of research activities, including the development of policy, also needs to be ensured.

81. Governments and educational institutions should identify and eliminate, from the early learning stages on educational practices that have a discriminatory effect, so as to increase the successful participation in science of individuals from all sectors of society, including disadvantaged groups.

91. Special efforts also need to be made to ensure the full participation of disadvantaged groups in science and technology, such efforts to include:
- removing barriers in the education system;
- removing barriers in the research system;
- raising awareness of the contribution of these groups to science and technology in order to
- overcome existing stereotypes;
- undertaking research, supported by the collection of data, documenting constraints; monitoring , implementation and documenting best practices;
- ensuring representation in policy-making bodies and forums.

Further, there were many other sections of the documents which, I would argue (and do so below in italics) , can be used by the disabled to demand more inclusion. For example:

Quoting from sections of the Declaration on Science:

33. Science and technology should also be resolutely directed towards prospects for better employment, improving competitiveness and social justice. Investment in science and technology aimed both at these objectives and at a better understanding and safeguarding of the planet's natural resources base, biodiversity and life-support systems must be increased. The objective should be a move towards sustainable development strategies through the integration of economic, social, cultural and environmental dimensions.

Here are three phrases which include disabled people:

1) "Social justice" cannot be attained without the involvement of disabled people. We must be part of the discussion of whether eugenic practices are consistent with social justice.
2) The concept of "biodiversity" most often is applied to plants but, clearly, human beings are part of "biodiversity" and "human beings" include all the varieties of us. Every form expressing every characteristic of human being is part of the planet's "biodiversity".
3) "Social and cultural ...dimensions" of course would include disabled people. 39. The practice of scientific research and the use of knowledge from that research should always aim at the welfare of humankind, including the reduction of poverty, be respectful of the dignity and rights of human beings, . . .

Obviously, the "welfare of humankind" has to also include the welfare of disabled people and they are the only ones who can say what is meant by their "welfare".

43. New curricula, teaching methodologies and resources, taking into account gender and cultural diversity, should be developed by national education systems in response to changing educational needs of societies.

Obviously, disabled people are part of every culture and part of the cultural diversity of a society. Their educational needs are also part of the educational needs of society. Further, because the disabled are so greatly affected by biological/medical research, Society must recognize its own own educational need to learn how to deal justly with disabled people.

Quoting from sections of the Framework for Action:

14. Through participatory mechanisms involving all relevant sectors and stakeholders, Governments should identify the needs of the nation and give priority to support of the public research needed to achieve progress in the various fields, ensuring stable funding for the purpose. Parliaments should adopt corresponding measures and levels of budget appropriation.

Obviously, disabled people are "stakeholders" and have to be involved in the "participatory mechanism" that identify "needs".

32. Modern scientific knowledge and traditional knowledge should be brought closer together in interdisciplinary projects dealing with the links between culture, environment and development in such areas as the conservation of biological diversity, management of natural resources, understanding of natural hazards and mitigation of their impact. Local communities and other relevant players should be involved in these projects. Individual scientists and the scientific community have the responsibility to communicate in popular language the scientific explanations of these issues and the ways in which science can play a key role in addressing them.

As already discussed, "culture" and "biodiversity" imply the involvement of disabled people.

46. Non-governmental organizations should play an important role in the sharing of experience in science teaching and education.

This, together with the "social justice" called for earlier, would mean the involvement of NGO's who represent disabled people. One way in which NGOs could help would be to educate genetic counselors and the medical profession about the non-medical side of disability, about the personal and societal components of disability. (The non-medical dimensions are already recognized in the UN definition of disability, which defines disability in social terms, not medical terms.)

56. Science and technology policies should be implemented that explicitly consider social relevance, peace, cultural diversity and gender differences. Adequate participatory mechanisms should be instituted to facilitate democratic debate on scientific policy choices. Women should actively participate in the design of these policies.

As sections 25 of the Conference Declaration and 91 of the Framework clearly indicate that disabled people should be part of the policy making process, section 56 would include disabled people. They and their concerns are part of Section 56's "cultural diversity" and "social relevance".

58. Governments should support graduate programs on science and technology policy and social aspects of science. Training in legal and ethical issues and regulations guiding international research and development in strategic areas such as information and communication technologies, biodiversity and biotechnology should be developed for scientists and professionals concerned. Science managers and decision-makers should have regular access to training and updating to cope with the changing needs of modern society in the areas of science and technology.

Again, based on sections 25 and 91, this section should imply the involvement of disabled people. The disabled can inform and enrich any ethical training of scientists.

68. All countries should encourage and support social science research to better understand and manage the tensions characterizing the relations between science and technology on the one hand, and the different societies and their institutions on the other hand. Transfer of technology should be accompanied by analysis of its possible impact on populations and society.

That implies the involvement of disabled people.

69. The structure of educational institutions and the design of their curricula should be made open and flexible so as to adjust to the emerging needs of societies. Young scientists should be provided with a knowledge and an understanding of social issues, and a capacity to move outside their specific field of specialization.

Obviously, disability is a "social issue" and one which has to be addressed by society, addressed, according to sections 25 and 91, with the involvement of disabled people.

82. Every effort should be made to eliminate open or covert discriminatory practices in research activities. More flexible and permeable structures should be set up to facilitate the access of young scientists to careers in science. Measures aimed at attaining social equity in all scientific and technological activities, including working conditions, should be designed, implemented and monitored.

This, from the elimination of "discriminatory practices" to "attaining social equity", has to include disabled people.

90. Taking into account the outcome of the six regional forums on women and science sponsored by UNESCO, the Conference stresses that special efforts should be made by governments, educational institutions, scientific communities, non-governmental organizations and civil society, with support from bilateral and international agencies, to ensure the full participation of women and girls in all aspects of science and technology, and to this effect to:
-promote within the education system the access of girls and women to scientific education at all levels;
- improve conditions for recruitment, retention and advancement in all fields of research;
- launch, in collaboration with UNESCO and UNIFEM, national, regional and global campaigns to raise awareness of the contribution of women to science and technology, in order to overcome existing gender stereotypes among scientists, policy-makers and the community at large;
- undertake research, supported by collection and analysis of gender-disaggregated data, documenting constraints and progress in expanding the role of women in science and technology;
- monitor the implementation and document best practices and lessons learned through impact assessment and evaluations;
- ensure an appropriate representation of women in national, regional and international policy and decision-making bodies and forums;
- establish an international network of women scientists;
- continue to document the contributions of women in science and technology.
-To sustain these initiatives governments should create appropriate mechanisms, where these do not yet exist, to propose and monitor introduction of the necessary policy changes in support of the attainment of these goals.

Obviously, the wording of this section is more focused on women, more elaborate, and stronger than that of section 25 of the Declaration, but is also in keeping with section 25. Certainly, if these are appropriate measures for women, the same has to apply to all disadvantaged people, including disabled people.

Finally, just one more point. In paragraphs 8, 13, and 74 of the Framework, there is mention of freedom of expression and opinion for scientists.

What is the point of such a freedom unless we provide ways for the scientist, including the scientist who is also disabled, to offer his/her opinion in the first place?

 

Further Considerations

The documents of the Conference are not legally binding. It is now up to all of us to use the documents in such a way that they achieve change. It was always clear that the documents would not be radical papers but they do mention many problems and they do state that women and (other) disadvantaged groups should be involved in policy making processes. That's a start and it's a quantum leap for disabled people because for the first time THEY, as well as women, indigenous people, and ethnic minorities, have an international document which explicitly says that THEY should be part of the policy-making process and should have equal access to science and technology research and education.

Why is this important? Why do disabled people or any other group need access to the policy making process? Why Science? Why Bioethics? Why should we care? Allow me a long digression to explain, using as my example the justification of eugenic practices. I would like to demonstrate how the exclusion of disabled people from one bioethics/science policy debate has led to the disenfranchisement of disabled people from the human/equality movement and the increased perception of disability as a medical problem rather than a social one.

 

Eugenics

First, it is useful to clarify what is meant by "eugenics". Eugenics is not associated with a cell, a zygote, an embryo, a fetus, a person, or a human being. Eugenics is associated with a characteristic of a cell, a zygote, an embryo, a fetus, a human being. Someone decides , based on stated or unstated values, which characteristics are worthy to be part of society and which are not. The process implies discrimination. However, selection is not necessarily based solely on genetic composition. For example, elimination of a fetus believed to be exposed to thalidomide is based on a phenotype.

There are many ways to select or deselect the genotype/phenotype of one's potential offspring or of living members of society: prefertilization diagnostics, preimplantation diagnostics, prenatal testing, post natal testing, in vitro fertilization, abortion, sperm banking, egg banking, cloning, infanticide, fertilization, adoption or mate selection.

Eugenics occurs around the world because we discriminate against and seek to eliminate unwanted characteristics from our midst. Today, the nature and extent of the characteristics we can choose to eliminate or selectively nurture is increasing with advancements in genetic knowledge and procedures. Many procedures not intrinsically eugenic can be used for eugenic purposes. For example, abortion per se is not eugenic, but can be used in an eugenic fashion.

When we examine eugenic practices, we have to answer four questions at least:
1) Where do we draw the line in eugenic practices?
2) Can we draw a line in eugenic practices?
3) Are there such things as free choice and autonomy in eugenic practices?
4) What is the impact of eugenic practices on human/equality rights? Where do we draw the line? Can we draw a line?

The key question is how does a society (engaging in social eugenics) or a person (exercising personal eugenics) decide which characteristics are permissible in offspring. Can a society influence or regulate the decisions at any level? Is there a rational way to draw a line between characteristics with such names as Tay-Sachs, Beta-Thalassemia, sickle cell anemia, thalidomide, Alzheimer's, PKU, female, male, gay, lesbian, bisexual, mental illness, cystic fibrosis, cerebral palsy, spina bifida, achondroplasia (dwarfism), hemophilia, Down Syndrome, coronary heart disease, osteoporosis, or obesity?

Tay-Sachs

The first step in distinguishing among these characteristics would be to see whether the genotype/ phenotype ensures a certain death after birth. Tay-Sachs is often cited as an example to justify eugenic measures because most people do not want to condemn a human being to a slow, painful death. Eugenic measures can be employed on two different levels: (a) on the level of the potential offspring (in different stages of development), which would lead to selective reimplantation, selective abortion or infanticide, and (b) on the level of the gene carrier which would lead to testing of parents, prevention of marriage and prevention of conception. The choice of measures will depend on the cultural, societal, moral, and religious background of the particular group using eugenic measures. In Western countries the procedure is mostly on the level of the potential offspring , but there are groups where it works on the level of the carrier. (5)
Tay-Sachs is different than the other characteristics mentioned earlier. Even when "treated", Tay-Sachs results in certain death.

Beta-Thalassemia

In some places, notably Sardinia and Cyprus, premarital blood tests for Beta-Thalassemia (a blood condition leading to death in early adolescence unless treated intensively) are widely applied. In Cyprus, they are mandatory. Thalassemia is treatable, but the procedure is very costly and has threatened to bankrupt the entire health care system in both areas. Although "unfavorable" test results do not prevent carriers from marrying each other, people in Sardinia and Cyprus will nearly all follow a eugenic follow-up procedure: 25% on the level of the carrier and 75% on the level of the offspring . (6)

Beta-Thalassemia, although treatable, still leads to eugenic decisions (social and personal ) in countries whose health care system cannot afford to provide treatment.

The availability of affordable treatment and support is one factor in eugenic decisions concerning the "carriers" of many genotypes/phenotypes, e.g. cystic fibrosis, hemophilia, insulin-dependent diabetes and many others. Note that all of these conditions are deadly if treatment is not provided. (7)

Down Syndrome

Down Syndrome is one of the all time favorite targets for eugenic elimination. Between 80-95% of those mothers who learn that their baby might have Down Syndrome choose to abort. (8)

Eugenic practices in general often are justified by using the example of preventing Down Syndrome (9).

What is there to justify eugenic practices in the case of Down Syndrome? It is not a terminal disorder. It does not necessarily require costly medical treatment.

In the case of Down Syndrome, eugenic decisions for the most part are not made for medical reasons but for societal, educational, perceptual, and conceptual reasons. In most countries, including Western countries, Down Syndrome is viewed as a burden to society and to the family. It is also believed that having Down Syndrome ensures a low quality of life for the Down Syndrome individual and his/her family. Western Societies use "quality of life" and 'burden" arguments to justify their eugenic decisions to eliminate many “medicalized’ characteristics that have come to be labeled as "disabilities". It seems that as soon as we allow the use of quality of life/burden arguments, no line can be drawn between the “disabled” who should be eliminated and those who should not. (10)

If social context, economic context, and personal and family circumstances of the parents - and not the details of disability - are the yardsticks by which eugenics decisions are made, can those same yardsticks be used to judge other characteristics such as sexual orientation and gender? (11,12)

There are those eugenic decision-makers who would draw the line between disability and gender (13) or between disability and sexual orientation. Let us examine some of the arguments they make.

One argument sometimes used to justify prohibiting choices based on gender selection while allowing those based on disability selection is that disabled people are a burden, women are not. This argument, however, cannot fit those societies in which female offspring are perceived as burdens. Indeed, the perception of "burden", whether that burden is associated with gender or with disability, is based on societal or familial circumstances. It is just not true that the burden of a disability is intrinsic to the person with the disability. In a caring and sharing society, most disabilities will not be viewed as burdens.

Let us ask ourselves what constitutes a burden? Is it the dependency of a person? Is it the need for emotional adjustments? Every person will define burden differently. That which is not valued will seem a burden. Burden engenders an expectation that a society and individuals ought to do something that they don't see as quite in their self-interest. To use the burden argument to insinuate that the "burden" is inherent to those being designated as having perceived burdensome characteristics is to engage in an untenable distortion. The "burden" is in the eye of the beholder.

Another argument put forward to justify differences between gender and disability selection (for eugenic "solutions") is that we have to take into account the societal consequences of those "conditions". This is code for saying that society can afford disability selection but cannot afford gender selection because gender selection might lead to an imbalance in the number of males and females in the society. This argument has at least two flaws:

1) If societal consequences must to be taken into account, then we effectively have a state-regulated eugenics program which would condemn choices based on individual rights and reproductive freedom. Bill C-47 in essence would have made Canada a country with a societal, government sponsored and encouraged eugenics program. The United States already has such a program. (14)
2) The danger of gender imbalance may be imminent in countries such as India but in Canada or the USA, the preference for males over females is not so great as to make apparent a gender imbalance in these countries.

Interestingly, a Government of Canada paper accompanying Bill C. 47 defended the prohibition of gender selection by saying (See endnote 13) that it was "a) contrary to Canadian values of equality and respect for human life and dignity and b) a form of sex discrimination". These arguments, if valid, lead to discomforting conclusions:

1) They suggest that "disability"-- by not being given the same deference as "gender" -- does not allow those who "have it" to partake of the benefits of equality and respect for human life. Put another way, this means equal protection under the law is not to be accorded the disabled.
2) The arguments further suggest that societal discrimination is not to be equally applied among groups. By targeting "disability", discrimination is institutionalized. Justification, using the discrimination argument, of special protection based on gender, only works if the decision of whether or not discrimination is acceptable depends on the target of the discrimination.

Another argument against gender selection as the basis for eugenics decisions is that such selection lowers the status of women in general and ". . . perpetuates the situation that gave rise to it". Patricia Baird the head of the former Canadian Royal Commission on New Reproductive Technologies often employed this argument. This line of thinking easily leads us to the understanding that if women (where they are the devalued sex) need special protection due to their devaluation by society, then disabled people need even more special protection (Most people would agree that disabled people are even more devalued than women.).

Still another argument, this one from (1999) Draft World Health Organization (WHO) guidelines on bioethics, says “Sex is not a disease. Except for severe sex-linked genetic disorders, the use of genetic services for the purpose of sex-selection is not acceptable. " The problem with this argument is that rejecting gender-based selection while accepting the screening out of gene-related disabilities, we invite inconsistency and discrimination. Disability should not be equated with disease.

Last but not least is the argument of Joseph C. Fletcher: “There are three reasons why it is important to draw a moral line on sex selection and stay behind it. The first is that gender is not a genetic defect. . . Second, as noted by the President’s Commission (1983, p. 57), sex selection violates the principle of equality between females and males and the attitude of unconditional acceptance of a new child by parents, so psychologically crucial to parenting. . . Third, sex selection is an unacceptable precedent for “genetic tinkering” at parental whim with characteristics that are unrelated to any disease." (15)

In response to these reasons for discrimination, I note:
1) Not everything detectable is a defect. Being born without legs is not necessarily a genetic phenomenon; it might be viewed as a birth rarity but not a genetic defect per se. Because we may find a gay gene, does this justify labeling "gay" a defect ? Obviously, the rules for discrimination, if that is what we want, have to be better drawn than simply putting gender-based discrimination in one class and discrimination related to all other potentially-perceived-as-negative characteristics in a second class.
2) Any test for an unwanted characteristic abolishes the unconditional acceptance of the child by the parent. Why only see that in relation to gender?
3) Characteristics other than gender are unrelated to disease; some of these characteristics may be suitable candidates for parental tinkering. Being born without legs (because one's mother used thalidomide) is not a disease; would we want to ban the use of ultrasound to check for the condition?

Turning next to the problem generated by eugenic selection based on sexual orientation (if they ever find the gay gene), let us consider what would happen if we were able to test for sexual orientation?

Increasingly, people with various sexual orientations are making their orientations public, sharing their view of themselves as simply having made a different lifestyle choice regarding relationships and sex. At the same time, society as a whole continues to harbor deep resentment and uneasiness regarding these choices. Most parents would rather have mainstream children when it comes to sexual orientation. So it seems that societal prejudice and intolerance will drive the use of a test for sexual orientation, not the demand by the group targeted as burdensome.

In examining the burden and suffering arguments for justifying sexual orientation as a basis for discrimination, for the most part, you will not hear from people with non-mainstream sexual orientations 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. And you will hear much the same thing from many disabled people. But if the prevention of suffering is a valid reason for preventing the birth of children with the characteristic associated with suffering, then testing of fetuses will have to include testing not only for traditional disabilities but also for sexual orientation. In determining the scope of testing, what causes the suffering should be irrelevant unless we are prepared to remove the causes of suffering. Until and unless the causes (inflexibility of society to accommodate differences) can be removed, deselection/ termination of the fetus (with the undesirable characteristic) will seem the only other option.

If we turn to the burden argument vis-a-vis sexual orientation, we find that many people view a child with non-mainstream sexual orientation as a burden. Potential parents who have difficulty accepting this characteristic, if they discern a way to avoid the perceived burden, may choose to abort the fetus. (16) So if "burden" is accepted as a viable argument for a eugenic solution, the tests for sexual orientation will have to be added to the allowable range of tests for those seeking an "acceptable" child .

Many gay activists do not agree with a test for being gay. (17) And many bioethicists are opposed not only to the use and development of a test for being gay but also to research targeted at finding a gay gene. Schuelenk et al. write that, " research into sexual orientation - simplistically referred to as 'gay gene' research- is an 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 homophobia. Moreover, such research may lead 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". (18)

Applying the reasoning of Schulenk et al to disability, we find that research into the genetic origin of disabilities reveals disability-phobia. And the dangers for disabled people is as real as the dangers are for gay people.

Examining the writings of Ed Stein, we encounter other insights and inconsistencies. (19) Note: Stein used "sexual orientation" and related words to fill the gaps I have indicated by ". . ." in reviewing some of Stein's arguments.

Stein argues that the availability of procedures to select . . . children would contribute to discrimination and prejudice against. . . and, more generally, undermine the maintenance of a just society. Further, he notes, these effects carry significant weight in determining whether genetic technologies should be developed and whether their use is, or should be, legally permissible and morally acceptable.

Stein further notes that the claim that a parent is simply trying to protect a child from the wrath of society's prejudice often is a rationalization . . . The relevant point is that behind many of the preferences for. . . children is a negative attitude towards. . . He goes on to suggest that the emergence of . . . selection procedures in cultures with negative attitudes towards . . . will reinforce the preference for. . . children over. . . and further is likely to encourage the view that . . . are not worthy of living . And he adds that if the condition of . . . relative to . . . in a society are poor and if the preference for . . . is quite strong, legal recourse is necessary to protect. . .

Stein also points out that there is a disanalogy between arguments made against the permissibility of orientation selection procedures and arguments against the permissibility of using genetic technology to prevent the birth of babies with serious disorders. Such disorders, he notes, may dramatically decrease life expectancy, cause great suffering and intrinsically undermine a person's quality of life, and be so distressing that a person with such a condition would say she wishes she did not have this condition. Homosexuality and bisexuality, he points out, are not like this. In particular the primary negative features of being a lesbian, a gay man or a bisexual have to do with societal attitudes towards their sexual orientation not with intrinsic features of homosexuality and bisexuality.

Ed Stein used sexual orientation and related words to fill in the gaps I have indicated by dots (. . .). But how can one justify filling the dotted gaps with some characteristics and not with others. Are not those gaps just as well-filled by words such as "disability"? Stein tries to make the argument that sexual orientation is a "problem" stemming from societal structures whereas disability is a problem intrinsic to the person with the disability (this is the traditional segregation between the medical and social model of a characteristic). But is that true? Why should gayness be accommodated by a societal adaptation model and disability not? Further, if being gay is indeed related to a gene, how can it not be intrinsic to the person? Stein claims that disabled people would love to be not disabled but gays don't want to be non-gay. Is that true? Many disabled people don't feel they would be better off were they "normal" and many gay people would rather not be gay.

From the above it becomes clear how difficult, if not impossible, it is to favor certain characteristics with exclusion from eugenic "solutions" and not favor all of them. The dangers are profound for those with any characteristic which is seen as unacceptable. The fact that different characteristics will be targeted in different countries does not argue for the correctness of favoring some characteristics over others.

 

Are there such things as free choice and autonomy?

Allow me to remind you of some recent historical anecdotes, details, and quotations:

1) Dr. Margaret Thompson, Order of Canada member and former president of the Genetics Society of Canada, said while a defense witness for the Alberta government in the Leilani Muir sterilization case, "some causes of 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 of inheriting or passing on a defect to their children have the pill and other contraceptives available. They can seek genetic counseling before a child is born and can abort a child likely to be defective." (20)

2) Eike Kluge a professor of bioethics at the University of Victoria and a member of the British Columbia government's Special Advisory Committee on Ethical Issues, is cited as saying. "It can be socially responsible not to bring a child into the world who is fated to suffer terrible from a genetic disease." (21)

3) The U. S. Nobel laureate Joshua Lederberg, one-time adviser to Cetus Corporation, said in 1970 in testimony before the U.S. 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. He added that these numbers would increase the genetic burden over time, just as environmental pollution would increase over time. Therefore, he proposed as the most important ad hoc action the advancement of prenatal diagnosis combined with selective abortion. (22)

4) Francis Crick, another Nobel laureate, said at the Ciba-Geigy Symposium in London 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."(23)

5) Once a fetus is diagnosed with trisomy, laws regarding abortion change. Ordinarily the stage of fetal development is an essential factor in deciding whether a woman carrying a healthy fetus can obtain a legal abortion. In a pregnancy that involves a fetus with Down Syndrome, however, women 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 been universally defined and so its meaning 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 a fetus with "defects" is allowed in several states in the USA as late as the second and even the third trimester. (24)

6) Choice is heavily circumscribed by cultural, social and economic pressures and all these are powerfully against a women choosing to continue with a pregnancy after "an abnormality" has been detected. The British Abortion law enshrine this prejudice by not allowing termination after 24 weeks unless a likely problem has been discovered. (25)

7) A study conducted by the Canadian Royal Commissions on New Reproductive Technologies found that, as a result of pressure from hospital staff, one in four pregnant women felt obliged to undergo amniocentesis. Of those pregnant women whose fetus tested positive for a birth defect, one in three believed she was more or less forced to have an abortion. (26).

8) In 1993, the Committee on Assessing Genetic Risks, Division of Health Sciences Policy, at the Institute of Medicine, in the U.S. concluded, "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 or 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 be 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 of 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 of intolerance based on genetic testing will require continuing vigilance."(27)

9) The same 1993 Committee on Assessing Genetic Risk cited above further noted,"The potential for manipulation or control in the 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 "(28)

10) Testifying before the U.S. Congress in spring of 1990, Arkansas state health director Jocelyn Elders took an unusual tack in her defense of legal abortion. "Abortion" she said "has had an important and positive public health effect in that it has reduced the number off children afflicted with severe defects". As evidence, the future surgeon general of the U.S. cited this statistic: the number of Down Syndrome infants in Washington State in 1976 was 64 percent lower than it would have been without legal abortion. (29)

11) In recent decades, the public is fairly evenly split on the issue of abortion, with about 54 percent opposing and 39-47 percent advocating abortion. Public opinion is dramatically different, however, when it is believed that the fetus will be born with a defect. Even persons who otherwise describe themselves as pro-life advocates may make an exception based on the health (normality) of the fetus, as in the case of Down Syndrome. (30) In the case of a fetus with Down syndrome, 78 percent believe that abortion should be legal. (31)

12) Author Laura Hershey asserts that, although prenatal testing appears to empower women because it allows for reproductive choices, it is actually asking women to ratify social prejudices. (32)

13) A 1995 Roper poll enquired about genetic testing that "may make possible the early detection of certain inherited diseases...for which there could be (emphasis added) treatment". Respondents were asked whether they would "personally want to take such a test". 75% said yes and 20% said no.

In another question, pollsters referred to genetic testing that "may make possible the early detection of certain inherited diseases... for which there is no (emphasis added) treatment or cure" and asked whether respondents would "personally want to take such a test". 64% answered yes; 32% said no. (33)

14) In their book on Ethics and Human Genetics, Dorothy Wertz and Joseph Fletcher write, “The main arguments for selective abortion arises from: 1) the obligation to reduce suffering for the affected family and the fetus when a serious and untreatable genetic disorder has been diagnosed, and 2) the obligation to prevent genetic disease and its impact on present society and future generations, in the absence of effective genetic therapies”. (34)

15) Philosopher Philip Kitcher, in his book, The Lives to Come , (35) argues, like Bob Williamson, (36) in favor of a voluntary, "laissez-faire eugenics" in which families make their own decisions about the kinds of children they wish to bear and rear. The concept of "laissez-faire" eugenics" may lead us to think that parents have autonomy and free choice but, in reality, do they? In many countries, the first stumbling block to free choice and autonomy is the affordability of the treatment. As is the case in Cyprus and Sardinia, affordable treatment is not always available. In such circumstances, who can blame a parent for making the eugenic decision to avoid the sure death of their child? If we want to talk about autonomy and free choice, we have to make sure that treatments are available. In his vision of voluntary eugenics, Kitcher presupposes a situation in which everyone is well-educated about genetic disability and excellent support exists for those with disabilities. In order to make choices between alternatives, people need full and fair information about the alternatives, and they need adequate social, cultural, and financial support to act on several of the various alternatives. These two conditions are not met, even in Western countries. The realities of raising a disabled child are mostly negative, not necessarily because of the child, but because the level of social acceptance of most disabilities is low, and because economic supports are eroding or lacking altogether. Predominant social values in North America encourage having few children but making each one a work of art.

16) At a 1999 conference on fertility, world-renowned embryologist Bob Edwards said that the increasing availability of pre-natal screening for genetic disease makes parents morally responsible not to give birth to disabled children. He noted that, "Soon it will be a sin of parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children." (37)

The many quotations and incidents I have cited above reflect the general cultural promotion of eugenics concepts, with disability being the general target. The citations illustrate how women lose their right of autonomy and their reproductive freedom. Direct coercion of women threatens any semblance of voluntary eugenics. Women, in many cases, have become the quality control gatekeepers for societal expectations of human perfection. The concept of predictive testing carries with it the concept of personal eugenics and, in reality, introduces a shift to a concept of societal eugenics. Thus we are moved towards a society in which the community/ the government decides which people with what characteristics are to be allowed to live and which are not. In such a society, we may reject eugenic selection made on the basis of gender or sexual orientation but we still consider as good both selection based on perceived disability and the technology that makes such selection possible. In such a society, we effectively abolish the principle of free choice for women in regard to their pregnancy and substitute in its stead the principle of societally-sanctioned (and societally defined and limited) free choice.

The answer to the question of whether eugenic practices allow free choice and autonomy is No. Eugenic decision-making almost always occurs in a social context.

 

Eugenics and the interactions
among equality rights groups

It has always been difficult to accommodate the views of different groups in a movement. An equality rights movement which would integrate and accommodate the views of women, indigenous peoples, gay/lesbian/ bisexual people, visible and ethnic minorities, and disabled people - to mention just a few of the groups - is a movement fraught with conflict of interests. Even within any one group, the disabled, for example, fights erupt. The wheelchair user and the blind person have different needs regarding curb cuts and it is often not easy to come to agreement.

Conflicts of interest occur between and within all groups. Until recently, I would have described the interactions among various human rights groups as either non-supportive or generally neutral in tone. The groups were not often in conflict. However, with the recent arrival of the genetic "revolution" and its promises, the possibility for conflict is heightened. With the new gene technologies, judgments we may have already made about each other now imply attainable "solutions": elimination for the negatively-judged characteristics and enhancement for the positively-judged characteristics. And so now the various groups demanding human rights - women, indigenous peoples, gay/lesbian/bisexual people, visible and ethnic minorities, and disabled people - seem to be in direct conflict, each questioning the value of the defining characteristic represented by the other. Now, with judgments of their "value" threatening their self esteem and pride, not to mention the lives of their offspring, groups defined by various "characteristics" begin to jockey for positions from which to say that their characteristic should not be considered part of this dimension of the genetic revolution.

Women's rights advocates fought for a long time for their "reproductive freedom", their autonomy of reproductive decision-making. As long as that only meant the right to abortion, disabled people were able to support it ( that is, if they as individuals did not believe in the sanctity of human life). The right to abortion per se, and for that matter belief in the sanctity of life, did not target a specific characteristic of any one group. But then, in response to the advancement of reproductive/ gene technology (predictive testing), a second demand was added to the call for abortion rights, namely the "right to know". Now, other groups are threatened because the right to know implies that judgment (and condemnation) are allowable on the basis of information. If you know the fetus has Down Syndrome, you can make a certain judgment and, in doing so, you also will alter the relations between equality rights groups defined by these two characteristics, notable "women" and people with "Down Syndrome". (38)

In such a situation, women still working to asset their own rights in society become, perhaps unwittingly, the appointed guardians of the quality and genetic composition of humanity as a whole. Women thus may become tools for enforcing an analysis based on a medical model of unwanted characteristics.

The disaster goes further. With abortion and the "right to know", women can terminate pregnancy on the basis of the sex of the fetus. Being the watchdog of society can mean judging (and condemning) those with their own characteristic ("female"). While this situation might seem a remote possibility in Western countries, it remains a possibility wherever women are devalued. (39) And so, in part to eliminate this possibility altogether, there comes a push to go one step further ; women demand that their characteristic alone - i.e., "gender" - be excluded from the “right to know” policy framework. Now the Animal Farm philosophy has arrived and with it the messages that:
1) Some characteristics (e.g., "gender") are more worthy than other characteristics (e.g., “disability”);
2) Deselection/termination by society based on some characteristics (e.g., "disability") is acceptable but deselection/termination based on other characteristics (e.g., "gender") is not;
3) One group (of a certain "gender") is hindered by a societal framework and another (the "disabled") is hindered by its own “intrinsic defects” (genetic or otherwise).

With these messages, we arrive at eugenic practices.

 

What then is the impact of eugenic practices
on human/equality rights?

One major consequence of eugenic practices is the emergence of an "Animal Farm" philosophy: Some are more equal than others.

The specter of eugenic practices tends to pit those with differing characteristics against each other. A war of the characteristics begins. Who will win and who will loose and what options are available to solve the "problems", at least on the surface?

Three options are obvious insofar as solutions to "problems" are concerned: :
1.A eugenic solution (change at the genetic level)
2.A euthenic solution (change at the societal level)
3.A euphenic solution (change at the personal level)

Women who denounce eugenic solutions for the "female" "problem" in India still want to "solve" the "problem". Eugenic solutions (getting rid of people or persons-to-be who "have" the characteristic "female") is unacceptable and so they advocate for euthenic solutions (change within the environment in which women live), to make society more accepting of women. Gays also denounce eugenic "solutions" for "gayness" and instead opt for euthenic solutions. For many gays, the suggestion of euphenic solutions (to cure them of being gay), is offensive and untenable since to them being gay is part of who they are. To "fix" them demonstrates a disregard for them as they are. Deaf people, blind people, and dwarves often reason in a manner similar to gays, finding both eugenic and euphenic solutions unacceptable.

For years, people who were labeled as "disabled" have fought for the use of a social model of disability in which disability is understood in terms of societal attitudes and the environment in which they live. This would seem to call for euthenic solutions. But in reality, in most countries, disabilities are understood within the medical model, which allows only for eugenic solutions. Euphenic solutions are not available in most cases.

Eugenic solutions and an emergent Animal Farm philosophy have many consequences. They weaken the involvement in the human rights movement of those whose characteristics are targeted for eugenic solutions. Once pre-birth eugenic solutions are established for those with targeted characteristics, e.g. "disability", other consequences follow for those living persons who already have the characteristic. They cannot help but notice that their society, in order to deal with their "problem", will have to establish - if it has not already - such after-birth eugenic procedures as infanticide, DNR ("Do not resuscitate") and euthanasia.

 

Conclusion

The World Conference of Science met in 1999 and discussed, in some cases for the first time, many long-standing issues, including some related to disability. If that Conference leads to an involvement of disabled people in the policy making process, to increased dialogue and mutual respect among disadvantaged groups (such as women and the disability community), and to an end of the Animal Farm philosophy (where some disadvantages are more equal than others), then the conference was a success. If disabled people now are to be heard in similar conferences, such as an NGO (non-governmental organization) conference about science and technology, planned in Stockholm for 2000, then this conference was a success. If disabled people now are to have access to ethics and policy making boards, if their voices now are to be taken seriously, then this conference was a success.

Such successes as these would not only be victories for the disability community but, given the many valid points, valuable perspectives, and intelligent, talented people the disability community can bring to the bioethical, medical, and scientific debates, they would be victories for us all. With no convincing arguments to point the way to an acceptable line regarding the use of predictive tests and eugenic solutions, a much more thorough debate is needed, with all the parties involved. We haven't thought about any of it very deeply yet. We need to, if only to avoid terrible errors. The only protection we have available at the moment, the only way to avoid tragedy, is to be a society which does not view any human characteristic as a disaster, whether it be not having legs or having some other disability or being gay or being female. We need to have a place for every one and to support each other. We need to terminate the Animal Farm philosophy ; it can only lead to a bloodbath within the equality/human rights movement. We cannot work with each other when some view themselves as superior to others. The society we create is our only protection against the "gene-ism" (as in racism, sexism and able-ism) that in the end, we are told, will make targets of 60% of us all. (40)

 

Endnotes:

(1) According to a 1995 New Zealand report, "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." See Dixon, J.K.,W. I. Winship and D.R. Webster. 1995. Priorities for Genetic Services in New Zealand: A report to the National Advisory Committee on core health and disability support services. The Core Service Committee ( P.O. Box 5013, Wellington, New Zealand). 11.

(2) In essence, two philosophies collide here: the social model of disability and the medical model. The social model acknowledges that the lives of the disabled have value equal to that of the "abled", that although impairment may cause the disabled pain and discomfort, what really disables them as members of society is a socio-cultural system which does not recognize their right to genuinely equal treatment. In Western Europe, governments recently have begun to acknowledge the social model of disability and to make some efforts to better facilitate the full integration of disabled people into their societies. For most of the world, however, disability is still viewed as a medical problem. With that model, the danger arises of the "new genetics" becoming the new eugenics. And, with declining medical and social resources, biological/medical solutions, such as deselection based on predictive screening and euthanasia, become welcome and the need to improve the social, economic, and cultural environment that faces the "disabled" is never properly addressed.

(3) Disabled people make up 10-30% of the population.

(4) See <http://helix.nature.com/wcs/02-1g.html>.

(5) The Dor Yeshorim program started in Brooklyn, New York, among Ashkenazi Jews, is an example. See Wingerson, L. Unnatural Selection. Bantam Books, 1998.

(6) Wertz, D. C. 1998. What eugenics is and is not: some examples. The Gene Letter 3: 2.
See <http://www.geneletter.org/0299/eugenicsis.htm>.

(7) Wrongful birth/life litigation has been undertaken in the USA using the argument that a family with a disabled child has special costs related to the child. These costs the family cannot afford. Had the parents known about the disability beforehand, such suits contend, the parents would have aborted the fetus. Now, they can only try to get the necessary money by suing the doctor and others responsible for "wrongful birth". Still other cases are being brought for "wrongful breech of warranty". These (wrongful birth) cases which involve embryos which were not properly tested for birth defects before implantation. See <http://www.njatty.com/whatsnew/wrongbirth.html >.

(8) See the Report of the Royal Commission on New Reproductive Technologies Canada (1995); see also the comments of Lewis Holmes, Professor of Pediatrics at Harvard Medical School working at Massachusetts General Hospital, reported in Glover, N.M. and S. J. Glover. 1996. Ethical and legal issue regarding elective abortion of fetuses with Down Syndrome. Mental Retardation 34 (4): 207 - 214.

(9) In 1967 the American Medical Association passed a resolution endorsing abortion in cases in which "an infant may be born with incapacitated physical deformities or mental deficiency". A number of states approved use of abortion for Down Syndrome years before Roe v. Wade further paved the way for abortion to eliminate children with mental defects, including Down Syndrome. In 1995, the American College of Obstetricians and Gynecologists officially recommended Down Syndrome screening for all pregnant women. Prenatal screening is now effectively mandatory . See Glover and Glover. op. cit.

(10) At a conference in Melbourne, Australia, on February 13, 1998, Bob Williamson, director of the Murdoch Institute for Research into Birth Defects in Melbourne and Professor of Medical Genetics at the 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 a 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, her economic context and everything else. 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 of the overall holistic situation of a family and individuals. " (from an unpublished transcript of his speech)

(11) Aaron Greenberg, a Chicago lawyer who has published articles about the legal and ethical issues of sexual orientation research, said that if a so- called gay gene is ever isolated, parents should have the right to abort a gay fetus or manipulate its genetic makeup. He presented his arguments at the 16th Annual Symposium of the San Francisco Gay and Lesbian Medical Association. Timothy Murphy, a professor of medical humanities at the University of Illinois College of Medicine and organizer of the Gay and Lesbian Medical Association panel, said “I think it’d be a terrible thing if we ended up foisting gay and lesbian kids on parents who do not want them” Both quoted in the San Francisco Examiner, August 26, 1998. Available at: <http://www.sfgate.com/cgi-bin/article.cgi?file=/examiner/archive/1998/08/26/NEWS3525.dtl>.

(12) Women in countries where women are devalued sometimes use these same arguments (quality of life and burden) to justify their eugenic decision-making related to gender. See Kusum. 1993.The Use of Pre-natal Diagnostic Techniques for Sex Selection: The Indian Scene. Bioethics 7(2/3):149-165; Bumiller, Elisabeth. 1990. May You be the Mother of a Hundred Sons:A Journey among the Women of India. Fawcett Columbine, New York ; and Miller, B. 1981. The Endangered Sex: Neglect of Children in Rural North India. Cornell University Press, Ithaca.

(13) In the UK, in 1997, the British Medical Association condemned techniques which can predict to a certainty of 90% the sex of the fetus. The BMA said that it is unethical to assure a certain sex for the fetus. The only exception they allowed was the case in which a disease could be prevented. And they used haemophilia as an example. See The Times (London). August 10. 1997.
In Bill C. 47 (1997), the Government of Canada proposed (in section 4h) prohibiting use of 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, and (in section 4i) use any diagnostic procedure for the purpose of ascertaining the sex of a zygote embryo or fetus except for reasons related to its health. Although this bill was killed, another similar bill is already in the making .

In "New reproductive and genetic technologies setting boundaries enhancing health", Appendix A, a Government of Canada paper accompanying Bill C. 47, prohibition of gender 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". The notion of prohibiting gender selection on the basis of Canadian values and unfair gender discrimination was first put forward in a recommendation by the Canadian Royal Commission Report on New Reproductive Technologies.

(14) See Pennsylvania Consolidated Statutes Annotated, title 18,[189]3204 (c), as amended November 17, 1989, P.L. 592, No. 68, [189] 2.

(15) Wertz, D. C. and J. C. Fletcher. 1989. Ethics and Human Genetics: A Cross-Cultural Perspective.Springer Verlag: New York. 484.

(16) James Watson, a Nobel Laureate and first director of the Human Genome Project, is on record as saying that a women should have the right to abort if she doesn't want a gay child. See Macdonald, V. Abort babies with gay genes, says Nobel winner. Sunday Telegraph
( February 16,1997). See Electronic Telegraph (Issue 632) at
<http://www.telegraph.co.uk:80/et?ac=001969769656593&rtmo=fMD3qoVs&atmo=99999999&pg=/et/97/2/16/nabort16.html>.

(17)Tasmanian Gay and Lesbians Rights spokesman Rodney Croome noted that, "It is as morally unacceptable to suggest the abortion of gay babies as it is to say that Nazis were right to propose the
sterilization of so called inferior races." (See Australian Associated Press 17 Feb. 1997.) The same argument can be made for disability.

Compare also the comments of Nick Partridge, chief executive of the Terrence Higgins Trust, an Aids charity, in Macdonald, op. cit.: "It is outrageous to suggest that there is a right for termination because there is a possibility the child might be homosexual."

(18) Schuelenk , U.,E. Stein, J. Kerin, and W. Byne. 1997. The Ethics of Genetic Research on Sexual Orientation . Hastings Centre Report 27(4 ): 6-13.

(19) Stein, E. 1998. Choosing the sexual orientation of children. Bioethics 12 (1): 1-24.

(20) Thomas, D. 1995. Geneticist defends sterilization in era before the pill. Calgary Herald (June 29): A14.

(21) Mitchell, A. 1997. Clinic to sift out bad genes. Globe and Mail (September 24): A1,A10.

(22) Lederberg, J. 1970. Biological Goal: Human Welfare. The New York Times (December 1). See also Lederberg, J. 1970. Genetic engineering and the amelioration of genetic defect. Bio-Science (20): 1307-1310.

(23) Wolstenholme, G.E.W. 1963. Man and his future; A Ciba Foundation Volume. Little Brown: Boston. 274

(24) Glover and Glover. op. cit.

(25) The International Sub-Committee of the British Coalition of Disabled People (BCODP). 1999. The new genetics and disabled people: a discussion document. Available at
<http://www.bcodp.org.uk/general/genetics.html>.

(26) Glover and Glover. op. cit.

(27) Committee on Assessing Genetic Risks,Division of Health Sciences Policy, Institute of Medicine. 1993. Assessing Genetic Risks: implications for health and social policy . National Academy Press: Washington D.C. 1-21.

(28) Committee on Assessing Genetic Risks. op.cit.8.

(29) Carlson, T. 1996. Eugenics, American Style: The Abortion of Down Syndrome Babies. The Weekly Standard (December 2): 5-10.

(30) Elkins, T.E., T.G. Stovall, S. Wilson, and J.V. Dacus. 1986. Attitude of mothers of children with Down Syndrome concerning amniocentesis, abortion, and prenatal genetic counseling techniques. Obstetrics and Gynecology 68: 181-184.

(31) Blendon,R.J., J.M. Benson, and K. Donelan. 1993. The public and the controversy over abortion. Journal of the American Medical Association 270: 2871-2876.

(32) Hershey, L. 1995. Choosing disability. Ms. Magazine 5: 26-32.

(33) Roper Center for Public Opinion Research. Hart and Teeter Research Companies. April 1995. Question ID# USNBCWSJ.4059.Q27B and USNBCWSJ.4059.Q27A. In POLL database, on the worldwide web through Lexis-Nexis, Academic Universe, or Dialog.

(34) Wertz and Fletcher. op. cit. 46.

(35) Kircher, P. 1996. The Lives to Come. Simon & Schuster: New York.

(36) See endnote 10.

(37) Rogers, L. 1999. Having disabled babies will be 'sin', says scientist. Sunday Times (July 4). Available at: <http://www.sunday-times.co.uk/news/pages/sti/99/07/04/stinwenws02034.html?999>.

(38) Compare the comments of Andrew Brown of Amnesty International regarding testing for Down Syndrome, “If society regards the presence of such disease as an acceptable reason for aborting a fetus, this makes it harder to preserve equality of respect for those already born. One might argue that their human worth, if not their human rights, have been diminished.” Quoted in Amnesty's latest fear: how our genes may determine our fate. 1998. The Independent (February 18): 19.

(39) See, for comparison, endnote 12.

(40) Dixon et al. op.cit.,p.11.

 

 

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