Jennifer Fitzgerald, LL.B  

As he grew, Siddhartha came to wonder what existed beyond the palace  walls. He pestered his father until his father relented and allowed  him to visit the city beyond the walls. The King arranged everything  perfectly, banishing the elderly, the ill, and the impoverished from  the streets for that day. The King's strategy was almost successful,  but Prince Siddhartha happened to catch sight of a funeral procession;  he chanced upon a beggar in the streets; and, finally, he saw an elderly  woman doubled over in pain. Prince Siddhartha's life turned around.  The taste of the beauty and perfection he had been raised on suddenly  turned sour when he began to realize the cracks in the veneer of control  and perfection on which he had been raised. So he left the palace  for the forests and, after much struggle, became the Buddha.  

It may seem a long leap from Buddha to the Human Genome Project. A  long leap in time perhaps, but the information uncovered in this project  has the potential to become like the gates around the King's palace:  the keeper of an illusory image of life based upon a modern myth-a  dream of beauty, control, and perfection. In the attempt to protect  that dream and to make it a reality some people have to remain outside  the palace; some of those people who are being asked to stay outside  for the sake of that modern dream are people with disability.  

While the desire for perfection in human form may not be a new concept- Thomas Murray, for one, traces its roots back to early Greek philosophy  before Socrates1-it is the meeting of the dream with the scientific  capacity to realize it,2 which demands greater scrutiny of the social  implications of the project. Canadian lawyer and philosopher, Jerome  Bickenbach, argues that while the medical and epidemiological relevance  of the genetic information being uncovered might be clear, its social  relevance requires much more investigation.3  

The "Code of Codes"  

The Human Genome Project has been described in awesome terms-for example,  as an "effort to unravel all the genetic information that defines  humankind,"4 as "the code of codes."5 It is a huge scientific project  with a multibillion dollar budget, primarily based in the United States,  but with many other participating nations. For many, the Human Genome  Project is seen as offering the promise of the alleviation and elimination  of many diseases and human afflictions. But, while the Human Genome  Project is uncovering genes for many conditions such as breast cancer  and cystic fibrosis, it is not significantly expanding our ability  to treat those conditions. So while we can map, we cannot as yet cure.  This raises ethical dilemmas as we seek to resolve how we should use  the information we are uncovering.  

At present, the options for the use of this information are quite  limited: unable to cure, we can choose either to care for the person  and their illness or impairment, or to eliminate the person (through  selective abortion or denial of access to medical resources) or to  discriminate against them (in areas such as employment and insurance).  While some would argue that the project's benevolence is guaranteed  by the fidelity of the humanistic scientists conducting it, there  remains considerable room for concern. Unfortunately, we seem to be  using this technology to respond to difference in the way in which  we have done for centuries6-by choosing to eliminate rather than embrace  and care.

  Power, Knowledge and The Use of Genetic Information  

The way in which we use the knowledge being made available through  the Human Genome Project is shaped by our social value structure.  Barbara Field, in a paper which applies Foucault's power/knowledge  model to genetic screening, argues that knowledge embodies great power  and that the field of genetic technology is no exception.7 In her  view, Science is providing the methods and society is assimilating the knowledge  of variation from the norm and so there is a formulation of the idea  of human genetic perfection. The knowledge which we acquire through  such a system of thought is used to categorize, theorize, include,  exclude and conceptualize individuals in specific ways . . . . The  power/knowledge structure is being used by society as justification  for the removal of a minority group on the basis that unproductiveness  and dependency are unacceptable characteristics. We as individuals  are being made to internalize this classification of the human condition  and modify our views.8 While as a society we have always had great difficulty assimilating  difference and imperfection, the availability of genetic information  allows new tools to be used to further alienate people with disability  through practices such as selective abortion9 and through the discriminatory  use of information in areas such as the allocation of medical resources,  insurance, employment, and education. In Field's words, "the power  to shut away the disabled already exists, surely termination is the  ultimate in concealment."10 While selective abortion, restricted access to medical services, and  insurance discrimination may be some of the practical endpoint implications  of the Human Genome Project for people with disability, equally important  is the conceptual transformation which has, and is, taking place along  the way. This conceptual transformation-the geneticization of self- has enormous implications for the lives of people with disability.  

Geneticizing Self  

While King Midas' touch turned everything to gold, the touch of Western  capitalism turns everything into a commodity-irrespective of whether  it originates in the physical, intellectual, or spiritual stratum  of existence. Williams cites the commodification of information and,  indeed, of time itself as the "latest and most pervasive expression  of capital accumulation."11 The Human Genome Project has the potential  to extend this process of commodification to the essence of human  existence-to commodify the self.

  In the Western liberal tradition, according to cultural critic, Sohail  Inayatullah, individuals "are not seen as resources, as brains, as  spiritual beings that can contribute to the world, but as machines  that create problems."12 The Human Genome Project has the potential  to build upon this foundation of 'mechanized self' to create the ' geneticized self'-the reduction of one's identity to a genetic code.  Similarly, bio-ethicist Steven Edwards argues that other facets of  our conception of self further alienate the experience of disability.  Edwards argues, for example, that the Cartesian view of self which  regards independence as constitutive of self identity-independence  from social context as well as from other selves-"militates against  a favorable view of disability . . . and ignore[s] the possibility  of construing social, contextual elements as constitutive [of self]." 13

  Some of those closely involved with the Human Genome Project, whether intentionally or not, have contributed to this mechanized/geneticized concept of self by describing the project as holding the  clues to an understanding of the essential nature of what it is to  be human, a 'complete recipe' for a human being.14 But dissenters  like Islamic cultural critic Ziauddin Sardar, find "[t]he reduction  of the human being to no more than the biological expression of the  program of instructions encoded in his or her DNA"15 to be objectionable.  

Such conceptions of self take no account of the whole person-the person  behind the genes. Within the genetic conception of self, the person  then becomes no more than their 'bad' genes and, as ethicist Herman  Meininger warns, "the difference between the defect and the bearer  of the defect gets lost,"16 thus denying that while a disability may  be part of a person's identity, it is not solely constitutive of who  they are, nor is it a valid reason to completely discount the value  of their lives.

  The genetic model of self also fails to recognize the contextual nature  of self-the complex inter-relationship between self and society; the  nurture side of the nature/nurture argument. Surrendering to one's  biological fate thus allows society to abrogate its responsibility  to ameliorate the pain and suffering which a person's inborn impairments  might otherwise, without a caring society, bring upon them.

  From a human rights perspective, the concept of the geneticized self  endangers the basic human rights of persons with 'bad' genes since  they are then defined out of humanity and potentially outside the  boundaries of moral responsibility. Tom Wilkie warns that "humans  who possess only the capacity for biological life [such as those born  with gross mental retardation] may be of less moral value in this  scheme of things than a normal chimpanzee or orangutan."17  

The Medicalization of Disability Becomes the Geneticization of Disability  

Impairment has always caused society discomfort. People with disability  have historically been segregated, isolated and, consequently, abused.  The inclusion of people with disability in our community remains an  ongoing source of struggle for people with disability, their families,  friends, and advocates. Our inability to embrace difference has resulted  in the othering of people with disability, placing them outside the  "paradigm of humanity."18

  Feminist philosopher Susan Wendell argues that the able-bodied members  of society seek to keep people with disability out of their own lives  and worlds because they represent a threat to the security of their  own perceptions of self which are embedded in a culture of perfection  and control.

  The disabled are not only de-valued for their de-valued bodies, they  are constant reminders to the able-bodied of the negative body-of  what the able-bodied are trying to avoid, forget and ignore. For example,  if someone tells me she is in pain, she reminds me of the existence  of pain, the imperfection and fragility of the body, the possibility  of my own pain, the inevitability of it . . . . Gradually, I make  her 'other' because I don't want to confront my real body, which I  fear and cannot accept.19

  One means of making people with disability other is by applying labels  which separate a person with disability from a normal person. This  tendency is not new. The medical model of disability-the reduction  of the life of a person with disability to no more than a medical  condition and the confinement of a vision for their future to a medical  prognosis-has played an integral part in shaping the lives of people  with disability. While the medical model of disability has been quite  thoroughly critiqued, both as a way of explaining the experience of  disability and as a basis for responding to the needs of people with  disability, that model is now in danger of being re-vamped in an expanded  and extended form as we begin to geneticize our concept of self.

  The alienation which people with disability currently experience in

our society has the potential to be intensified through the genetic  information currently being uncovered, further alienating the whole  and integrated person (the body, mind, and spirit) from the medically  or scientifically diagnosed person (the condition). Bickenbach warns  that genetic information has the potential to become the most profound  form of stigmatizing labeling people with disability have as yet experienced.20  "[G]enetic information purports to tell us what someone is 'really  like,' thereby relieving us of the need to look for signs, symptoms  or other overt characteristics. Human difference, when labeled genetically,  opens the door to the most profound forms of stigmatization."21

  Biological Determinism and the Abrogation of Social Responsibility

  The genetic model of disability thus promises to expand the population  of people with disability to include many people whose impairment  is their bad genes and their disability the social response of avoidance,  discrimination and even elimination which their impaired genes elicit  in others. As Bickenbach argues people will increasingly be viewed  in the light of "their inherent disabilities, rather than their actual  abilities."22 A pointed example of this is the American mother who  sought a genetic test for her twin daughters to determine which of  the children carried a particular gene for a degenerative illness  with onset in middle age. Her reason: she did not want to waste her  money sending the child with that gene to a private school.

  "Genetic essentialism"23 thus allows us as a society to throw our  hands up in the air and surrender to the fate of biology. Free will- our ability to create a better society-comes under siege24 and the  information made available through the Human Genome Project becomes  part of a sophisticated smoke screen to support the status quo, not  only in political and power terms, but also in cultural terms, and  to protect the Western dream of perfection and control.  

Sardar explores the consequences of devotion to the biological imperative:

  As machines, human beings do not have much of a free will let alone  any responsibility, for all our behavior is genetically determined  . . . . Whether a particular race is aggressive or docile, creative  or banal, musical or tone deaf, is all coded in their genes. The corollary  is that the hierarchical structure of the modern world, with the professorial- type white man at the top of the ladder and the indigenous cultures  of the Third World at the bottom, is actually a function of our human  nature ... then hierarchy is actually coded in human nature. The world  is the way it is because that is exactly how it should be. A proposed  scientific explanation thus becomes the instrument for legitimizing  the status quo. Human nature dictates that other cultures should always  be conquered, suppressed, exploited, marginalized, consumed and eradicated- in the final analysis we can only blame our genes! Hence the Holy  Grail of modern biology: the human genome project.25  

Biological determinism thus becomes the justification for the abrogation  of social responsibility for a society which has, in fact, simply  lost its capacity to care.  

In some respects the Human Genome Project, in conjunction with the  concept of biological determinism, is taking on a role not dissimilar  from the Eastern perversion of the laws of karma to support the caste  system. In India, for example, some (usually those from high castes  and in privileged social positions) explain away the vast inequalities  in a caste-based society on the basis that one is born into a caste  according to one's karma. Poverty and pain are then explained away  by the divine laws of nature (karma) and society is then absolved  from responsibility for the pain and misfortune of those in lower  castes. In the West it is not religion which is being used to support  social inequality, but science.

  Seeing Science in Context

  Modern Western science has historically been linked with impartiality  and instrumental rationality; with empiricism and with being value- free. With this historical backdrop to scientific discovery, it becomes  more difficult to understand the role of science within a broader  social context of social inequality and disparity.

  Yet many writers, particularly feminist and non-Western writers, are  beginning to challenge the impartiality of science and to seek to  understand science within its social context. There are those who  argue that scientists are too willing to make use of the metanarrative- the claim to have discovered universal truths which, in fact, "marginalize  or eliminate the argument of 'the other' by imposing a fixed standard  and standpoint of interpretation that seeks to arrest ambiguity and  control the proliferation of meaning."26 They argue that "[t]he grand  desire of Western science to encapsulate in a unitary code, thus reducing  nature, intuition, world, human beings, the entire universe into a  single equation, is a manifestation of its inner emptiness."27  

Bonnie Spanier, a feminist writer, argues that the way we construct  knowledge and truth is, in fact, actually strongly influenced by our  cultural beliefs about gender, race, and class.28 These unspoken biases  allow scientific authority to primitivize other experiences and ways  of knowing.29 In fact, it can actually primitivize whole groups of  people whose lives, as a result, become devalued and whose very existence  often then becomes conditional. These groups of people then become  labeled as other with the result that the protections and privileges  which one enjoys as a result of belonging and being part of, are denied  to those who are constructed as other.

  While the voice of those marginalized on the basis of their gender,  race, and class is now beginning to be heard, people with disability  still remain largely unheard and marginalized on the peripheries of  society. In some cases they are even othered by the other. For even  those who argue vigorously for the inclusion of the perspectives and  experiences of some marginalized groups frequently overlook the perspective  of people with disability.

  Thus, while genetic information may be constructed as being technical  and value-free information, it actually operates within a broad value  climate which fails to honor the experience or the existence of people  with disability. This unspoken and unacknowledged value context allows  the Human Genome Project to become another tool for further marginalizing  people with disability. Through the geneticizing of the self, the  lives of those with imperfect genes become de-legitimized. The imperfect  thus become the primitive; become the undesirable; become the avoidable;  become the unconscionable; become the illegal, and therefore, become  the punishable.

  It is thus important, as more genetic information becomes available  through the Human Genome Project, to understand the value climate  which is receiving that information and the impact that climate will  have upon the ways in which it is used. Indeed, science is not dislocated  from discourses of power and ideology, nor indeed from social values  and economic principles.  

The Marriage of Science To Capital

  The growth of the links between the commercial sector and science  has changed the cultural milieu of scientific endeavor. The Human  Genome Project, with its privatization of knowledge through the sale  of information to pharmaceutical companies, is big science like big  business. It is a multibillion dollar project which has squeezed funding  for small research projects for untargeted research in the biomedical  sciences, even though it is those small projects which are often considered  to have the greatest potential for making scientific advances.30 It  is this imperative which is driving scientists to ethically questionable  practices such as bio-prospecting-the collection of samples of human  tissues from indigenous communities. Already disputes have arisen  over the patenting of cell lines discovered through these collected  samples. This practice can be seen as a scientific version of the  economic and cultural colonization which has been an integral part  of Western history.

  This is big science and big science, with the capitalist value framework  which comes with it-the maximization of profit through economic rationalism,  as well as individualism, materialism, and mono-culturalism31-is  not conducive to creating social equity. Rather, it aligns the genetic  information coming out of the project with a culture of oppression  and exploitation.

  Economic Rationalism

  Many Western countries are moving rapidly towards increased privatization- a gradual privatization of public spaces.32 Much of this is driven  by utilitarian theory. When expressed in the market place, it becomes  economic rationalism. Economic rationalism provides a structure for  decisionmaking which places the preservation of financial resources  (the maximization of profit and the reduction of cost) at the forefront  of decisionmaking.

  Yet where decisionmaking becomes guided by a commitment to the profit  motive, unprofitable considerations-such as the care and protection  of vulnerable people in society-are set aside. As Bickenbach points  out in this case, the costs are people, people with disability.33  And there is thus a temptation to use genetic information to reduce  those costs in the simplest way possible-that is, by eliminating the  person who represents the cost.

  Even within a value framework which purportedly honors individual  choice in such matters, when one's decisions are colored by economic  rationalism and the principle of user pays, the choice of having a  child with disability becomes even less real as such a choice is seen  as being an economically irrational choice-because it either creates  a burden for the whole society to bear or, in other contexts, where  personal misfortune is privatized by the user pays principle, the  individual cannot afford to bear the financial commitment alone.

  Non-Directive Counseling and the Choice to Abort

  The genetic information being made available through the research  of the Human Genome Project is largely presented as value-free information  which provides parents, for example, with the opportunity to make  the "choice" to abort a fetus with disability. But freedom of choice,  which is a strong value framework within capitalist society, masks  deeper cultural influences which actually shape our choices. Many  have argued that these cultural influences make these choices more  apparent than real, particularly in a society which de-legitimizes  disability. According to Ruth Hubbard, "[I]n this liberal and individualistic  society, there may be no need for eugenic legislation. Physicians  and scientists need merely provide the techniques that make individual  women, and parents, responsible for implementing the society's prejudices,  so to speak, by choice."34  

Western society subscribes to a paradigm of health. The healthy state  is considered the norm with a degree of tolerance for momentary periods  of ill-health after which full health is restored. However, this paradigm  of health excludes individuals whose health experience, whether it  be chronic illness or disability, fails to conform to that paradigm.  Genetic technology fuels this paradigm by giving greater opportunities  to exclude those who fail to conform. Yet, this paradigm of health  or this myth of perfection is frequently in direct conflict with other  desirable social values which, because they have moved further down  a hierarchy of values, become consumed by the quest for perfection  which seems to prevail above all else.  

Thomas Murray argues that, in this respect, non-directive genetic  counseling is akin to "unilateral moral disarmament," "provid[ing]  no defense against even the most outrageous requests by prospective  parents."35 For in a Western context, individual choice prevails above  all, and yet the true freedom of choice is itself questionable since  that "choice" is informed by uncontested values and notions around  health and disability. Murray, for one, would go beyond freedom of  choice as a universal value which has no need to be balanced against  other values. In his words, "choice is a good in context, not a good  in itself. It is certainly not an ultimate good that needs no further  justification. It is not sufficient to invoke our cultural predilection  for individual choice as a justification for unlimited parental discretion  in prenatal diagnosis, especially in the sphere of family life in  which choice plays only a limited role."36

  Conditional Parenting

  Yet, by failing to contest the freedom of the individual to seek a  perfect child, we may in fact be giving license to other changes in  our value framework which may be deeply damaging to our social structure.  Genetic technology, used within a social framework which values perfection  and individual choice, introduces the notion of conditionality into  parenthood. Not only can we then ask ourselves: Do we want a child?,  but with genetic information we can ask ourselves: Do we want this  particular child? This reframes the nature of the parenting relationship,  making our parenting conditional upon the child meeting certain criteria.  For Meininger, however, parenthood is a moral category that requires  us to ask questions such as: Who should we be for our child?37 On  the other hand, genetic information allows us to reframe that concept  of parenthood so that the question becomes: Who should our child be  for us?

  This apparent control is deceptive. While we might be able to exclude,  through genetic technology, a child with Down Syndrome or spina bifida,  for example, from our parenting experience, we have much less control,  in a technological sense, over the personality and behavioral characteristics  of our children, or over disability which may be acquired through  accident or illness. Yet, by creating expectations of perfection and  by giving greater recognition to parenting as a conditional, as opposed  to an unconditional relationship, we leave ourselves ill-prepared  to deal with the reality of the parenting experience-and all the unforeseeable,  and quite often uncontrollable, trials and tribulations that experience  brings with it. For Murray, the rejection of perfectibilism is the  first step toward "embrac[ing] a conception of parenthood as the sustained  effort to work out unmistakably human relationships, that is, relationships  devoted to fostering love, dedication, and mutuality, in the face of ever-present imperfection, ambivalence, and disappointment."38

  Ethical Decisionmaking and the Technologizing of Parenthood  

Ethical imperatives, based upon quality of life judgments, are also  beginning to impinge upon the freedom to choose disability in such  a way that the prevention of the birth of children with disability  is now being seen as a part of our moral obligation. In this climate,  where the lives of people with disability are not valued, the tradition  of neutrality in genetic counseling39 actually operates to support  eugenic practices.

  Just as the conception of self has been geneticized by genetic technology,  so too has the parental relationship been technologized by technical  expertise. This too acts as an ethical imperative which disempowers  parents as ethical agents, placing their ethical decisions in the  hands of experts, yet under the guise of individual autonomy. Meininger  cites the research of Micha De Winter in the area of child care to  make the observation of a strong unilateral orientation amongst today' s parents "towards science and technology, towards quantification  and efficiency."40 He argues that the reliance upon science and technical  expertise demoralizes parents in their parenting so that their responsibilities  become constructed less in terms of personal relationship between  parent and child and more in terms of "child management."41

  Within a framework of expertise in which disability is negatively  constructed, it becomes increasingly difficult for individuals presented  with difficult choices to defy the experts and to choose disability.  In the end, disability itself becomes an act of civil disobedience  for which the dissidents-those who have chosen disability (either  for themselves or for their children)-are responsible. In China, this  particular act of civil disobedience is already illegal.42

  Promoting Health or Avoiding Disability

  Disability is much more than a question of health. Many people with  disability regard disability as much a social construction as it is  organic.43 The disability arises, not only because of the physical  or intellectual impairment, but also because people with disability  are physically, mentally, and emotionally denied access to society.  They seek to change the relative constructs of what is socially agreed  upon as normal, rather than seeking to alter their own identity. Some  people with disability could not, and would not, imagine themselves  without their disability. The disability has become an essential part  of their identity and genetic engineering thus challenges the worth  of their own sense of self.

  If we understand disability, along with gender, race, and class, as  part of the other created by the dominant paradigm, practices such  as selective abortion then become something other than mere health  issues. Working from an understanding of these frameworks of disability,  these practices become qualitatively different from practices such  as simply providing rubella immunizations to young women. For they  are embedded in the desire to root out difference, to take life simply  because it differs from the norm, because it belongs to the other.  The motivation goes beyond community health for the desire to eliminate  the difference exists even where the difference is something as unthreatening  to one's health as a cleft palate.

  Within this understanding of disability, genetic technology then becomes  a tool not for promoting community health but a mechanism of social  control for avoiding the appearance of difference. Newell44 argues  that if we, as a society, were really committed to improving public  health, we could more easily (and cheaply) promote a clean physical  environment, improved maternal health, and the provision of basics  such as clean drinking water. Instead, genetic technology is a solution  aimed more at controlling and wiping out difference than generally  improving health.

  Reconstructing Science within Holism and Diversity

  The growing connections between science and capitalism increasingly  align scientists and scientific endeavor with a culture of control  and domination. Wendell argues that it is for this reason that medical  ethicists confine themselves to life-and-death issues of medicine  for these relate to control, a notion more comfortable for them than  care.45  

Life-and-death interventions are the ultimate exercise of control  . . . . Because of the heroic approach to medicine, and because disabled  people's experience is not integrated into the culture, most people  know little or nothing about how to live with long-term or life-threatening  illness, . . . how to live with limitation, uncertainty, pain, nausea,  and other symptoms when doctors cannot make them go away.46

  What we need, however, is a construction and application of science  which actually speaks to the realities of human existence; something  which "offer[s] a means for transcending the materialistic limitations  of reductionism and allow[s] us instead to build a bridge between  science and the human condition."47

  The first step towards the reconstruction of science is for scientific  achievement to be seen, not in the sense of a definitive statement  of authority, but as an expression of human endeavor. In Sardar's  view, "scientists do not 'discover' the laws of nature, rather they  manufacture them. Laws of nature are not written in some inaudible  ink (sic) on the heavens, they are manufactured in laboratories."48  

And just as science cannot explain everything, nor can it create a  perfect world. Inayatullah describes this impossible goal in terms  of an inability to deal with difference, chaos, and complexity49-the  Western preoccupation with control at all costs. Inayatullah sees  the eschewing of the perfect society in favor of merely a "good society, " as an important "escape hatch" to avoid the otherwise inevitable cost of "collectivism" and a "tyranny of the mass."50

  For people with disability, giving up on the impossible goal of a  perfect society is an essential baseline for guaranteeing their inclusion  and acceptance in society. Giving up on the perfect self, at least  the Western concept of perfect self, is the next step. For the goal  of perfection locks people with disability in to fail. In a society  which aims for perfection, people with disability will always fall  short of the mark. In fact, this goal locks everyone in to fail, for  each of our lives at some point belies the Western myth of the perfect  self and the perfect society, whether it be through illness, old age,  or incapacity.51 Meininger writes,

  [A] successful life is not a life that excludes all tragic events,  but a life in the knowledge that real happiness cannot be found without  accepting tragedy too. So, parents have to go through an inner battle  between the idealized values of society, their life story and their  often dormant convictions about their identity as a parent.52

  Both Inayatullah53 and Miles54 provide an alternative Eastern view  of the self which is very different from the geneticized self of modern  Western science. Inayatullah argues that in Indian philosophy for  example, it is the perfection of the self-the spiritual self-and not  society which has been the goal. Miles believes that Western disability  thinking with its "apparent over-emphasis of the individual personality,  selfhood, and inflated public achievement orientation"55 may face  real challenges from Buddhist quarters.

  In a Buddhist discussion of 'quality of life', such goals may seem  naive. The phrase would more likely embrace right conduct, right mentality,  living the life one should live, being the person one should be.  The Buddhist concern is to 'fulfil one's dharma'-rather than the western  'following one's dream' which usually involves breaking away from  predicted roles.56

  The next step in reconstructing a holistic and ethical science is  to wed science to ethics. Indian philosopher Sarkar argues that a  civilized society-one in which discriminative judgment is highly developed- is essential for the appropriate utilization of scientific endeavor.  

Where the development of civilization is utterly negligible and science  gradually attains the apogee of development, science only paves the  way for destruction instead of doing any good to humanity. And so,  study and practice of science, though unavoidable, should not be  given a higher place than civilization.57

  For the well-being of people with disability, this means science must be committed both to compassion and to inclusion. Inayatullah identifies inclusivity as one of the keys to good future-oriented governance as opposed to simply future orientation, of which the Human Genome Project might be accused. Inayatullah speaks of "inclusiveness of the other [a deep democracy perhaps, not a shallow liberalism]" as an important key in good futures.58 "Not 'more of us and fewer of them' but a future generations-orientation that brings in other diverse cultures and viewpoints."59

  Disability is not a blemish awaiting removal, but a part of life waiting to be embraced. "The problems of living with a disability are not private problems separable from the rest of life and the rest of society. They are problems which can and should be shared throughout the culture as much as we share the problems of love, work, and family life."60  

We might try to construct a world without disability, but basically in doing so, we are embarking on a losing battle-for pain and pleasure are two sides of the one piece of paper. The illusory Western dream of control and perfection and the elimination of pain is just that-illusory. While we may remain enamored with the "promises" of science, they fail to answer some fundamental questions put by Sardar,

  Both theoretical physics and molecular biology, it appears, have brought us to the brink of the final curtain: a Theory of Everything and a 'Code of Codes' that lay bear every gene in our bodies are within our grasp. . . . But would the ultimate triumph of Western instrumental rationality really tell us something about ourselves? Would the end of reductive science really make us happy and be nice to each other? Would the reduction of the entire universe into a single equation that can be printed on an outsize T-shirt really answer the burning questions that confront humankind? Would a Theory of Everything enable us successfully to manipulate the world to all our advantage?61  

It's only a matter of time before the inability of Western science to answer these questions becomes common knowledge. After all, you can only keep the Buddha inside the castle walls for so long. Or can you?

1          HOMAS MURRAY, THE WORTH OF A CHILD 133 (1996).

2          d. at 134.  

3          Jerome Bickenbach, The Perils of Human Genetics, 1 ETHICS & INTELL. DISABILITY 2 (1996).  

 4          Robert A. Bohrer, Future Fall-Out From the Genetic Revolution, 24 FUTURES 681 (1992).

5          THE CODE OF CODES: SCIENTIFIC AND SOCIAL ISSUES IN THE HUMAN GENOME PROJECT (Daniel Kevles & Leroy Hood eds., 1992).

6          For a fuller discussion of our historical legacy of disdain for difference see Sohail Inayatullah & Jennifer Fitzgerald, Gene Discourses: Politics, Culture, Law, and Futures, 52 TECHNOLOGICAL FORECASTING & SOC. CHANGE 161 (1996).

7          Barbara Field, Foucault's Power/Knowledge Model Applied to Genetic Screening (Paper presented at the 10th World Congress of the International Association for the Scientific Study of Intellectual Disabilities, Helsinki, Finland (July 8, 1996)).  

8          Id.  

9          For a discussion of the legal and ethical aspects of selective abortion, see Jennifer Fitzgerald, Selective Abortion and Wrongful Birth in Queensland: Veivers v. Connolly, 25 QUEENSL. L. SOC'Y J. 189 (1995).

10        Field, supra note 7, at 3.  

11        Ramana Williams, Transformation, Tools and Transcendence, in TRANSCENDING BOUNDARIES: PRABHAT RAINJAN SARKAR'S THEORIES OF INDIVIDUAL AND SOCIAL TRANSFORMATION (Sohail Inayatullah & Jennifer Fitzgerald eds., Maleny, Gurukul, 1999)

12        Sohail Inayatullah, Leadership, Evil and Future Generations-Orientation: Towards a Global Conversation of Cultures, in GOVERNANCE FOR FUTURE GENERATIONS (Tae-Chang Kim & James A. Dator eds., 1996).

13        Steven Edwards, Intellectual Disability, Genetics and the Value of Human Life (Paper presented at the 10th World Congress of the International Association for the Scientific Study of Intellectual Disabilities, Helsinki, Finland (July 8, 1996)).  

14        James Santiago Grisolia, The Human Genome Project and Our Sense of Self, 41 IMPACT SCI. ON SOC'Y 45 (1991).  

15        Ziauddin Sardar, Conquests, Chaos and Complexity: The Other in Modern and Postmodern Science, 26 FUTURES 665, 674 (1994).

16        Herman Meininger, Parental Decisions After Prenatal Diagnosis of Foetal Defects (Paper presented at the 10th World Congress of the International Association for the Scientific Study of Intellectual Disabilities, Helsinki, Finland (July 8, 1996)).

17        TOM WILKIE, PERILOUS KNOWLEDGE: THE HUMAN GENOME PROJECT AND ITS IMPLICATIONS 3 (1993).

18        Susan Wendell, Toward a Feminist Theory of Disability, in FEMINIST PERSPECTIVES IN MEDICAL ETHICS 63, 74 (Helen Bequaert Holmes & Laura M. Purdy eds., 1992).

19        Id. at 71.

20        Bickenbach, supra note 3, at 2.

21        Id.

22        Id.

23        Robyn Love, Knowing Your Genes, PUB. UNDERSTANDING SCI., Jan. 21-27, 1996, at 25.

24        P. S. Greenspan, Free Will and the Genome Project, 22 PHIL. & PUB. AFF. 31-43 (1993).

25        Sardar, supra note 15, at 674.

26        D. Shields & Rohan Samarajiva, Competing Frameworks for Research on Information-Communication Technologies and Society: Towards a Synthesis, in 16 INTERNATIONAL COMMUNICATION ASSOCIATION, COMMUNICATION YEAR BOOK 354 (1993).

27        Sardar, supra note 15, at 672.

28        BONNIE SPANIER, IMPARTIAL SCIENCE: GENDER IDEOLOGY IN MOLECULAR BIOLOGY 6 (1995).

29        Williams, supra note 11.

30        SPANIER, supra note 28, at 101.

31        Jennifer Alister, Values in End-of-Life Decision-Making: Some Implications for People with Disability, AUSTRALIAN DISABILITY REV., Apr. 1994, at 45-53.

32        For a further discussion see Jennifer Fitzgerald, Economic Rationalism and the Decline of the Civic Culture, GLOBAL TIMES, Mar./Apr., 1997, at 12.

33        Bickenbach, supra note 3, at 2.

34        Ruth Hubbard, Eugenics: New Tools, Old Ideas, in 13(1/2) WOMEN & HEALTH 225, 232 (1987) (issue title: EMBRYOS, ETHICS AND WOMEN'S RIGHTS: EXPLORING THE NEW REPRODUCTIVE TECHNOLOGIES (Elaine Hoffman Baruch et al. eds.)).

35        MURRAY, supra note 1, at 118.

36        Id. at 138.

37        Meininger, supra note 16, at 4.

38        MURRAY, supra note 1, at 136.

39        Dorothy Wertz & John Fletcher, Sex Selection Through Prenatal Diagnosis: A Feminist Critique, in FEMINIST PERSPECTIVES IN MEDICAL ETHICS 241 (Helen Bequaert Holmes and Larau Purdy, eds. 1992).

40        Meininger, supra note 16, at 3.

41        Id.

42        Anne Ballantyne, The Search for a Perfect Baby, WEEKEND AUSTRALIAN, Nov. 7-8, 1992, at 79.

43        Christopher Newell, Some Ethical Issues Associated with Genetic Engineering for People with Disabilities, AUSTRALIAN DISABILITY REV., Feb. 1992, at 79.

44        Id. at 82.

45        Wendell, supra note 18, at 73.

46        Id.

47        PETER COVENEY & ROGER HIGHFIELD, FRONTIERS OF COMPLEXITY: THE SEARCH FOR ORDER IN A CHAOTIC WORLD (1995).

48        Sardar, supra note 15, at 670.

49        Inayatullah, supra note 12.

50        Id.

51        For a more in depth discussion of the myth of perfection see Jennifer Fitzgerald, Threats to the Lives of People with Disability, in 1 QUEENSLAND ADVOCACY INCORPORATED, PAPERS ON ETHICAL ISSUES AFFECTING PEOPLE WITH DISABILITY (1996).

52        Meininger, supra note 16, at 5.

53        Inayatullah, supra note 12.

54        Michael Miles, Disability in an Eastern Religious Context: Historical Perspectives, 10 DISABILITY & SOC'Y 59 (1995).

55        Id.

56        Id.

57        PRABHAT RAINJAN SARKAR, A FEW PROBLEMS SOLVED (1987) (see pt. 6, Civilization, Science and Spiritual Progress).

58        Inayatullah, supra note 12.

59        Id.

60        Wendell, supra note 18, at 73.

61        Sardar, supra note 15, at 671.

Copyright © 1998 by the National Legal Center for the Medically Dependent & Disabled, Inc.

Jennifer Fitzgerald, LL.B.*, Geneticizing Disability: The Human Genome Project and the Commodification., Issues in Law & Medicine, 10-01-1998.