Lecture: "Confined to Your Legs: Self-Identity and the Nano-Bio-Info-Cogno-Technololgy Revolution"

 

 

Nanotechnology is an emerging technology able to manipulate materials on an atomic or molecular scale[1]. At the nano-scale, elements can perform very differently than they do when they are on a larger scale making it possible to engineer novel materials that have entirely new properties never before identified in nature. The material science of nanotechnology has products already on the market. Nanomedicine is the preservation and improvement of human health using molecular tools and molecular knowledge of the human body. You should go to http://www.nanomedicine.com/NMI.htm  to read about the far fetching scopes of Nanomedicine.

Nanotechnology or nanosciences is special as it enables a new paradigm of science and technology which sees different technologies converging at the nanoscale namely (a) nanoscience and nanotechnology; (b) biotechnology and biomedicine, including genetic engineering; (c) information technology, including advanced computing and communications; (d) cognitive science, including cognitive neuroscience.

(“NBIC” (nano-bio-info-cogno).

 

 

The National Nanotech Initiative (USA) envisions applications for the converging of NBIC, in areas such as the environment, energy, water, weapons and other military applications, globalization, agriculture, space exploration, lifespan  extension, health (genome sequencing and detection of gene’ expression, new formulations and routes for drug delivery) and enhancing human performances such as improving work efficiency and learning, enhancing individual sensory and cognitive capabilities and improving both individual and group creativity through the usage of highly effective communication techniques including brain-to-brain interactions and  human-machine interfaces. [2] Arizona state university also identified potential application of NBIC if we look at programs such as the Biomolecular Nanotechnology program; the nanostructure research group; the Arizona biodesign institute and the Research Center for Ubiquitous Computing. And Arizona has of course NBIC companies like Alcor involved in Cryonics and life extension just battles your bill HB 2637; Axon Technologies (Tempe) MER Corporation (Tucson), Nanoscience Instruments, Focal Point Microsystems and Rohm and Haas Electronic Materials (Phoenix, Ariz).

 

Each NBIC application comes with its own scientific achievements, sales pitches, social consequences, problems and implications and it would go beyond the time I have to cover all the different areas of applications.

I want to focus in this talk on NBIC and ‘Health’ also called NBIC-medicine and the perceptions, arguments, ethics and players involved in the debate around it.

 

 

 

 

 

NBIC, Health, disabled people and improving human life

 

“What do we want from science and technology and in particular NBIC? How do advances in NBIC changes and influences our self perception, our self identity, the quality of our lives and our ability to pursue ‘the good life’?”  Answering these questions requires an examination of the complex interdependent fabric of perceptions, values, and choices within different cultural, economic, ethical, spiritual and moral frameworks. In the case of NBIC-medicine it is important to investigate the understanding that society and individuals have of the concept of health and disease. Furthermore as so called disabled people are often highlighted as the beneficiaries of NBIC-medicine products we have to ask ourselves what perception of disabled people and what concept of disability --a concept more contentious than is commonly recognized-- guides NBIC research and development and what role disabled people are playing in this process.

 

 

What is health? What is a disease? What methods to use to remedy the situation?

 

Three main models for health and disease (the medical, the social and the transhumanist one) can be identified.

Within the medical model of health and disease, health is characterized as the normative functioning of biological systems and disease is seen as the sub-normative functioning of biological systems. Medical interventions on the level of the individuals are seen as the remedy of choice.

On the global scale the disability-adjusted life year (DALY) has emerged as a new measure of the 'burden of disease'.[3] However it becomes increasingly clear that the DALY concept which so far is based on the purely medical model of health and disease is flawed. DALY treats e.g. paraplegia in developed and developing countries the same independent of societal parameters.[4] In developed countries many people with paraplegia have wheelchairs and the loss of mobility is reduced. In developing countries many do not have wheelchairs, and their mobility is severely restricted. Furthermore, wheelchairs alone are of no use unless the environment is designed to cater for them. So, the provision of a wheelchair in one context would not have the same effect that it would have in another context. It seems we need an additional model or a broader understanding of the concept of health and disease.

The social model of health and disease still follows the sub-normative functioning of a person however it differs from the medical model by questioning the exclusive focus on medical remedies of individuals. According to the Jakarta declaration on Health[5]  pre-requisites for health are peace shelter, education, social security, social relations, food, income, empowerment of women, a stable eco-system, sustainable resource use, social justice, respect for human rights and equity. Above all, poverty is the greatest threat to health. The declaration states further, “Creating supportive environments is about recognizing that people's health is affected by their environments whether it is physical, cultural, social or economic”.

If we look at the leading conditions leading to a global burden of disease it seems that this burden can be diminished a lot by including environmental societal and other contextual interventions. In the poorest regions of the world, childhood and maternal underweight, unsafe sex, unsafe water, sanitation, and hygiene, indoor smoke from solid fuels, and various micronutrient deficiencies are major contributors to loss of healthy life.[6]  In both developing and developed regions, alcohol, tobacco, high blood pressure, and high cholesterol were major causes of disease burden. The four addictive disorders — nicotine addiction, calorie addiction, alcohol abuse, and illicit drug abuse — account for more than one-third of our disabilities as measured by Daly’s. . [7]

It seems we need a fusion of the social model and the medical model of health and disease.

 

Advances in NBIC give life to a third the transhumanist model of health and disease where health is characterized as the optimum functioning of biological systems and interpreted as the concept of feeling good about ones abilities, functioning and body structure. Disease in this case is identified in accordance with a negative self perception and a suboptimum functioning. Medical and technological interventions on the level of the individual are seen as remedies in this model. As it will be increasingly difficult to distinguish between NBIC ‘health products’ which lead to  ‘therapies towards the norm’ and ‘therapies which will exceed a norm improving norms and adding new abilities to human beings will be inevitable leading to the need to include the transhumanist model of health and disease in our thinking.

 

 

NBIC and the self identity of disabled people

 

The concept of health and disease is one variable in deciding how to use NBIC. Another variable is how we perceive disabled people and how disabled people perceive themselves.

Parallel to the three models of health and disease, three main models describing the self identity of disabled people, their relation to so-called non-disabled people, and the usage of NBIC can be identified:

Disabled people can opt to be seen as inherently defect and subnormal in need of being fixed by NBIC to a societal norm of the so called non-disabled e.g. giving legs to amputees which will be as good or worse than biological legs (the patient/medical model type). [8].

They can opt not only to be fixed to a norm but also to be enhanced, augmented above the norm (e.g. giving bionic legs to amputees, which work better than the ‘normal’ biological legs; or the artificial heart) following the transhumanist vision of the so called non-disabled people who believe that every human body is defective (the Transhumanist model/type/), [9]

 

 

 

Photo of Osseointegrated ProsthesisDiagram of Attachment to Bone

 

 

 

 

and they can opt to see their biological reality as a variation of being not in need of fixing but in need of having the physical environment, the interaction with the physical environment, and the societal climate changed to accommodate their biological reality (e.g. giving wheelchairs to amputees and making the physical environment wheelchair accessible, or using teleportation devices if they are ever developed) (the social justice social model type). [10]

 

Question is whether disabled people are in a position to freely choose their self identity and whether they are allowed to shape their relationship with the non-disabled and whether they have a say in the priority setting for NBIC product developments?

 

The self identity of disabled people, the relationship between disabled people and non-disabled people, and the application of NBIC is very much influenced by the perception the non-disabled have of disabled people. I will show you now three examples of perception of disabled people.

 

"Fortunately the Air Dri-Goat features a patented goat-like outer sole for increased traction so you can taunt mortal injury without actually experiencing it.  Right about now you're probably asking yourself 'How can a trail running shoe with an outer sole designed like a goat's hoof help me avoid compressing my spinal cord into a Slinky on the side of some unsuspecting conifer, thereby rendering me a drooling, misshapen non-extreme-trail-running husk of my former self, forced to roam the earth in a motorized wheelchair with my name embossed on one of those cute little license plates you get at carnivals or state fairs, fastened to the back?'...."[11]

 

 

“How did parents endure the shock [of the birth of a thalidomide baby]?  The few who made it through without enormous collateral damage to their lives had to summon up the same enormous reserves of courage and devotion that are necessary to all parents of children with special needs and disabilities; then, perhaps, they needed still more courage, because of the special, peculiar horror that the sight of their children produced in even the most compassionate.  Society does not reward such courage…because those parents’ experience represents our own worst nightmare, ever since we first imagined becoming parents ourselves.  The impact upon the brothers and sisters of the newborn was no less horrific.  This was the defining ordeal of their family life – leaving aside for now the crushing burden on their financial resources from now on”. [12]

The negative implication of the above quote is evident. I offer you another view which is expressed in a book which comes out soon. [13] Reflections from a Different Journey presents 40 stories by successful adults who grew up with disabilities. They provide insights into what it is like to persevere in the face of community prejudices, and what it takes for families and children with disabilities to work together toward fulfillment. While there are many books for parents on raising a child with a disability, this is the first to help them learn from people with disabilities,

 

One study, performed in 1994 at the Craig Hospital in Englewood, Colorado, asked a set of questions about disability to people with a spinal cord injury  (n=168) (SCI) and non-disabled people working in the intensive care unit (ICU) of the hospital (n=233).  The non-disabled workers were asked to answer the questions as they relate to their real being and also envisioning themselves as having a spinal cord injury.  The study showed that the self-rating between the disabled and non-disabled is not that much different, but there is quite a discrepancy between imaging oneself with a disability versus having the one.

 

 

Self esteem ratings following severe Spinal Cord Injury (SCI)[14]

 

 

Non-disabled Providers

Self-rating

Non-disabled Providers

Imagining self with SCI

SCI survivors

Comparison group

 

% Agreeing with the statement

I feel that I am a person of worth                                           

98

55

95

I feel that I have a number of good qualities

98

81

98

I take a positive attitude

96

57

91

I am satisfied with myself

on the whole

95

39

72

I am inclined to feel that I am a failure

5

27

9

I feel that I do not have much to be proud of

6

33

12

I feel useless at times

50

91

73

At times I feel I am no good at all

26

83

39

 

 

Only 18% imagined they would be glad to be alive with a severe SCI compared with 92% of a true SCI comparison group 17% of providers anticipated an average or better quality of life compared with 86% of the actual SCI comparison group.

 

The literature shows that people with different experiences and perspectives (affected versus not affected) perceive the same condition differently:  those with a condition very often perceive it as less serious than do those without the condition [15]

 

Furthermore day to day language often makes disabled people feel bad about themselves and about the usage of certain NBIC application for example there is a hierarchy regarding different modes of movement.  Crawling is on the bottom of the acceptance list, below the wheelchair, which is seen as inferior to the artificial leg, particularly one that appears “natural”  which in turn is seen as inferior to the ‘real thing’ This hierarchy is not based on functionality but rather on emotions, prejudice, and rigid adherence to a normative body movement and body aesthetics.

 

Tools like the wheelchair are frequently demonized in expressions like “confined to the wheelchair,” but artificial legs are not, even though a wheelchair often leads to safer, easier, and more efficient mobility than artificial legs.  No one would use the phrase “confined to natural legs,” though in reality people with legs are confined to them, while many wheelchair users can leave their wheelchairs.  Similarly, the negative concept of confinement is not used to describe driving a car.  It is viewed as empowering rather than limiting, despite our widespread dependence on this mode of transportation.  In much the same way, while most of us who live in the north would not survive a single winter without central heating, we generally do not label ourselves as “technology-dependent.”

This negative perception of disabled people is also reflected in the fact that many feel that “it is unfair to a child to be born with a disability (mM) and that “It is socially irresponsible knowingly to bring an infant with a serious genetic disorder (mM) into the world in an era of prenatal diagnosis.” [16]

 

So we have three different models of health and disease and three possible self identities of disabled people.

 

Taken the above described perceptions of disabled people into account it comes as no surprise that the development of NBIC applications and the selling of NBIC ‘health products  focuses mostly on offering disabled people medical solutions (prevention or cure/normative adaptation) and might move towards transhumanist solutions (augmentation, enhancement of the human body) but rarely offers social solutions (adaptation of the environment, acceptance, societal cures of equal rights and respect) as disability is seen mostly as a medical problem leading to a low quality of life and subnormal form of existence.[17].

This sentiment to favor patient and transhumanist solution over social justice solutions is supported by legal decisions which seem to indicate that disabled people have the obligation to fix themselves[18] for example in  Sutton v United States, 1998 the court ruled that the Americans With Disabilities Act does not cover people whose disabilities can be sufficiently corrected with medicine, eyeglasses or other measures. The perception that society will never support and accept disabled people with their variation of being also supports this development. [19] Rarely does it cross the mind of academia, the media, the general public, NGO’s, policy makers and governments that the medical model of health and disease and the medical model of viewing disabled people may be to simplistic; that the non normative abilities, functioning and body structures exhibited by disabled people (sM) might  lead to suffering of disabled people, their families and society not based on the biological reality of the disabled but due to the negative reaction towards and lack of support for these ‘subnormal’ disabled people (sM); that disabled people (sM) might positively identify with their biological reality seen by others as defect, deficient, impaired and subnormal.

 

If this NBIC focus will not change it will have detrimental effects for disabled people in the minority (the developed) and in particular the majority (the developing) countries. It is easy to say “we will find a cure for you” but reality is that cures are scares and far between and even if cures are developed most disabled people will not have access to them. Reality is that only 2% of disabled people in developing countries have access to even basic health care not to speak of high tech medicine. [20]Furthermore the focus on the medical, defective label often leads to pity, rejection, lack of respect, segregation, an animal farm ethics[21], and a silenced human rights voice. [22]

 

 

 

 

 

 

 

NBIC and Bioethics

 

It is believed that many negative consequences of S&T for humankind could be avoided by using ethical principles to govern them. Could the field of ethics help disabled people to freely choose between a patient, a transhumanist and a social justice identity and help them influence the usage of NBIC accordingly? Is the field of ethics preventing negative consequences of NBIC for disabled people?  So far the answer has to be No to both questions.  Many bioethicists question and negate the validity of a social justice identity of disabled people. [23]

 

However there is also an ethical reasoning which makes the acceptance of a social justice identity nearly impossible and which led to the reality that policies for the implementation and governance of NBIC products increased the discrimination against disabled people. An “animal farm” philosophy appears to dominate the debate around bioethics issues and the development of bioethics theories as they pertain to disabilities (mM). In this philosophy, characteristics labeled as ‘medical problems’ are treated different from characteristics labeled as ‘societal problems’.

Let’s give you two examples. Sex selection is questioned by many ethicists and seen as unethical. Disability (mM) deselection is seen as the right thing to do. Disability deselection is seen as ethically ok as it is done for medical reasons. Sex selection is seen as unethical as it is done for social reasons. The UNESCO International Bioethics Committee uses this reasoning to also justify genetic enhancement.

Another example are Anti-Genetic discrimination laws.

I define genetic discrimination as follows:

“Genetic discrimination occurs if we deal with humans or potential humans in a discriminatory fashion based on the knowledge, perception or reality attached to the consequences of having a particular gene, gene activity or gene product.”

 

However the anti genetic discrimination laws and law proposals use a different interpretation of genetic discrimination as these laws and law proposals only cover asymptomatic people (the non disabled, the social reason) but not symptomatic people (the disabled, the medical reason). And this medical versus social reason plays itself out in the debates OF many other bioethics issues such as infanticide and mercy killing of a disabled, the right to not give disabled people organs, research on non competent people, euthanasia and assisted suicide to just name a few. It seems you just have to find a way to label the desired intervention as done for medical reasons to gain ethical approval. This is a problematic if not an untenable reasoning because if we follow the transhumanist sentiment where everyone is defective any intervention could be seen as done for medical reasons. The medical/versus social reason also has to fail because which biological reality/biological characteristics is seen within a medical versus a social framework by itself is a social cultural construct for example in some societies being gay is seen as a disease in other societies it’s seen as a social justice concept. In the end we can define anything as a disease.. We could see women as a double X syndrome and men as a XY syndrome.

And who is defined as a disease by society often does not reflect the self perception of the so-called diseased.

 

 

 

 

 

Slanting the playing field of public policy and the governance of NBIC in such a way that disabled people are forced to accept a certain identity and certain perception of self could be seen as violating the UNESCO International Declaration on Cultural diversity[24] which states:

 

“Reaffirming that culture should be regarded as the set of distinctive spiritual, material, intellectual and emotional features of society or a social group, and that it encompasses, in addition to art and literature, lifestyles, ways of living together, value systems, traditions and beliefs”

 

Many disabled people, people with non normative body compositions, functioning and abilities have forged a cultural identity based on a common history of oppression and a common bond of resilience. They see able-ism (discrimination based on non-normative abilities, functioning and body structures) an equal to racism, ageism, homphobie and other other-isms.  Furthermore disabled people are a social group. This means that this interpretation of cultural diversity entails that disabled should feel free to choose cultural identities of their choice whether they are medical social transhumanist or others.

 

Slanting the playing field towards a certain identity and discrimination against a cultural minority (the disabled), has interesting similarities with other types of state-sponsored action that are forbidden by international law, .e.g. torture. The Inter-American Convention to Prevent and Punish Torture [25],defines torture as

 

"the use of methods upon a person intended to obliterate the personality of the victim”

 

and article one of the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, 1984 states

 

 “torture means any act by which severe pain or suffering, whether physical or mental, is intentionally inflicted on a person …..for an reason based on discrimination of any kind, when such pain or suffering is inflicted by or at the instigation of or with the consent or acquiescence of a public official or other person acting in an official capacity”,

 

 

 

 

 

NBIC and the non-disabled

As it will be increasingly difficult to distinguish between ‘therapies towards the norm’ and ‘therapies which will increase a norm’ we will see a fusion of the patient/transhumanist identity. If the disabled are allowed to enjoy (or better say forced to enjoy) new abilities whether they re entirely new or incremental improvements of normal abilities for sure others such as the non-disabled transhumanist want to follow by adding all kind of augmentations to their bodies helping themselves to fulfill their own desires like improving their legs.

 [26]

 These non disabled transhumanists see NBIC as having the potential to free them from the “confinement of their genes”(genomic freedom) and the potential to free people from the “confinement of their biological bodies” (morphological freedom).

The above dynamics might lead to a rat race of abilities, productivity, competitiveness and functioning between individuals and between societies, cultures and countries and a normative creep towards increased norms.

 

 

 

Conclusion;

 

There are a few questions people deciding on R&D of S&T should ask themselves:

 

Do the arguments and dynamics around the decision making process of scientific and technological research and development lead to further oppression of disabled people?

Do the arguments and dynamics around the decision making process of scientific and technological research and development allow for disabled people to freely choose their self-identity?

How does the arguments and dynamics around the decision making process of scientific and technological research and development impact on non-disabled people and their relationship with disabled people?

How can we make the process of governance of science and technology more inclusive and diverse?

 

The debate around NBIC and health has to become much more multi facetted loosing its adherence to just the medical model of disability, health and disease. If NBIC is to benefit societies and it’s people it has to support self identities, cultural identities and diversities not being hijacked to promote just one self identity and one cultural identity.  The debate has to realize that health and medicine itself is a social constructs. [27] The ethics around the governance of NBIC has to stop granting ethical approvals based on an arbitrary system which approves applications done for so called medical reasons but condemns them if done for social reasons as such dichotomy is artificial and socially constructed.

As the USA has rejoined UNESCO in October 2003 I would like to mention some demands from the UNESCO WORLD CONFERENCE ON SCIENCES which was held in 1999. [28]  First it acknowledges that there are barriers which have precluded the full participation of disadvantaged groups (disabled people ethic groups and indigenous groups) (25).  It demands to fully incorporate women scientists and disadvantaged groups from the South and North into scientific networks. (17). It demands the full participation of disadvantaged groups in all aspects of research activities, including the development of policy (79). 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 from disadvantaged groups. (81). It further demands that special efforts 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.

 

It is the sad truth that disabled people are hardly present in academia, the field of bioethics, policy making bodies and forums and the debate around the use of NBIC in general national and international. And if they are present or heard they are mostly disabled people who adhere to the medical patient identity. The social justice type is hardly present or the type, who questions the blind adherence towards a single patient identity. The newest example is the follow up NBIC conferences which flow from the initial NBIC workshop from 2001 which do not include disabled people anymore. CSPO was responsible of having me included in the original 2001 workshop. Also follow up workshops of societal implications of NBIC and nanotechnology did not include disabled people as the societal workshop of nanotechnology in 1999 didn’t.   

 

         I have a dream that one day this world will rise up and live out the true meaning of its creed:  We hold these truths to be self evident, that all humans and humans-to-be are created equal.  I have a dream that the children of this world will one day live in a world where they will not be judged by the color of their skin, their age, their gender, their sexual orientation, their abilities, their religious beliefs, their heritage ... but by the content of their character.

-- Free after Martin Luther King, Jr.

 



[2] M. Roco, W. Bainbridge eds., Converging Technologies for Improving Human Performance: Nanotechnology, Biotechnology, Information Technology and Cognitive Science, (Kluwer Academic Publishers, Dordrecht Hardbound,  2003, ISBN 1-4020-1254-3) also online at

http://www.wtec.org/ConvergingTechnologies/Report/NBIC_report.pdf; Roco, M., 2000 NATIONAL NANOTECHNOLOGY INITIATIVE FROM VISION TO IMPLEMENTATION http://www.nsf.gov/home/crssprgm/nano/nni11600/sld008.htm; National Nanotechnology Initiative More Products http://www.nano.gov/html/facts/MoreProds.htm  

National Nanotechnology Initiative Applications/Products http://www.nano.gov/html/facts/appsprod.html  

[3] See International Centre for Bioethics Culture and Disability section on Quality of Life http://www.bioethicsanddisability.org/qualy.html

[4] Allotey P, Reidpath D, Kouame A, Cummins R.  The DALY, context and the determinants of the severity of disease: an exploratory comparison of paraplegia in Australia and Cameroon. Soc Sci Med. 2003 Sep;57(5):949-58.

[5] Jakarta Declaration on Leading Health Promotion into the 21st Century  http://www.who.int/hpr/NPH/docs/jakarta_declaration_en.pdf 

[6] Ezzati M, Lopez AD, Rodgers A, Vander Hoorn S, Murray CJ; Comparative Risk Assessment Collaborating Group.  Selected major risk factors and global and regional burden of disease. Lancet. 2002 Nov 2;360(9343):1347-60.

[7] Oklahoma State Board Of Health A Report From The State Board Of Health: "The State Of The State's Health" State of the State's Health 2003 Interim Report (2003), Section global and US burden http://www.health.state.ok.us/board/ir03/burden.html

[8]  G.Wolbring "Disability rights approach to genetic discrimination" in J. Sandor, ed., Society and Genetic Information: Codes and Laws in the Genetic Era (CPS books Central European University Press, 2004 ISBN: 963924175X)

[9] ibid 8 and  International Centre for Bioethics Culture and Disability section on transhumanism http://www.bioethicsanddisability.org/transhumanism.html go to subsection transhumanism and disability. The first disabled transhumanist group already appeared the “Ascender Alliance” in the UK

[10] See ibid 8 and Jonathan Penney 2002 v1n1 Journal of Law and Equality of A Constitution for the Disabled or a Disabled Constitution? Toward a New Approach to Disability for the Purposes of Section 15(1) p83-94 http://www.jle.ca/files/v1n1/JLEv1n1art3.htm

The social model allows ‘ableism’ (discrimination based on non normative functions abilities and bodily structures) to be seen in the same light as racism or sexism.

[11] Nike ad in Backpacker magazine October 2000

[12] Stephens T and Brynner R (2001) Dark Remedy; the history of thalidomide; Perseus Publishing, Cambridge Massachusetts, USA page 65/66

[13] Wolbring (2004)" Parents without Prejudice" in the book "Reflections from a Different Journey: What Adults with Disabilities Want All Parents to Know" Stan Klein, John Kemp (ed) McGraw Hill. ISBN: 0071422692 in Stores April 2004.

[14] Gerhart KA, Koziol-McLain J, Lowenstein SR, Whiteneck GG.  (1994) Quality of Life Following Spinal Cord Injury; Knowledge and Attitudes of Emergency Care providers, Annals of Emergency Medicine, vol. 23, 807‑812

[15] Croyle RT, Ditto PH. 1990 Illness cognition and behavior: an experimental approach. J Behav Med 1990 Feb;13(1):31-52; Marteau and Johnston 1986; Marteau and Johnston 1986  Determinants of beliefs about illness: a study of parents of children with diabetes, asthma, epilepsy, and no chronic illness. Journal of  Psychosomatic Research 30: 673-683; Pueschel et al,1986; Pueschel SM, Monteiro LA, Erickson M. 1986   Parents' and physicians' perceptions of facial plastic surgery in children with Down's syndrome. J. Mental. Deficiency. Research 30: 71-79; Conway SP, Allenby K, Pond MN. 1994 Patient and parental attitudes toward genetic screening and its implications at an adult cystic fibrosis centre. Clin.Genet 45: 308-312.; Michie and Marteau 1999 The choice to have a disabled child. Letters to the editor Am.erican  Journal of  Human Genetics  65: 1204-1207; Cooley WC et al  1990 Reactions of mothers and medical professionals to a film about Down syndrome.  American. Journal of the Disabled  Child  Am. J. Dis. Child; Cameron P, Titus DG, Kostin J, Kostin M. (1973) The life satisfaction of nonnormal persons.  Journal of Consulting and Clinical Psychology, vol. 41, 207 214; Woodrich W and Patterson JB, (1983) Variables related to acceptance of disability in persons with spinal cord injuries.  Journal of Rehabilitation, , July Sept.,  26 30; Ray C, West J. (1984a) Social, sexual and personal implications of paraplegia. Paraplegia. 22:75 86.; Ray C, West J. (1984b)  II. Coping with spinal cord injury.  Paraplegia 1984 Aug;22(4):249-59; Stensman, S, (1985)  Severely mobility-disabled people assess the quality of their lives. Scandinavian Journal of Rehabilitation Medicine,  vol. 17, 87 99; Bach, JR and Tilton, MC (1994) Life satisfaction and well-being measures in ventilator assisted individuals with traumatic tetraplegia. Archives of Physical Medicine and Rehabilitation, vol. 75, 626 632; Cushman, LA and Dijkers, MP (1990) Depressed mood in spinal cord injured patients: staff perceptions and patient realities. Archives of Physical Medicine and Rehabilitation,  vol. 71, 191 196; Whiteneck GC et al., (1985) Rocky Mountain Spinal Cord Injury System Report to the National Institute of Handicapped Research, 29 33.; Whiteneck GG, Charlifue SW, Frankel HL, Fraser MH, Gardner BP, Gerhart KA, Krishnan KR, Menter RR, Nuseibeh I, Short DJ, et al. Mortality, morbidity, and psychosocial outcomes of persons spinal cord injured more than 20 years ago. Paraplegia 1992 Sep;30(9):617-30; Eisenberg MG and Saltz, CC (1991) Quality of life among aging spinal cord injured persons: long term rehabilitation outcomes. Paraplegia, vol. 29, 514 520); Saigal S, et al.; (1996) Self perceived health status and health related quality of life of extremely low birth weight infants at adolescence. JAMA. 276: 453 459.

[16] Wertz, D.  Eugenics Is Alive and Well: A Survey of Genetic Professionals Around the World, 1998 Science in Context, 11(3–4): 493–501, at p.501

[17] J. Watson, President’s essay: genes and politics. Cold Spring Harbor Laboratory Annual Report, 1996, p. 1-20. http://www.cshl.org/96AnReport/essay1.html; T. Stephens  and R. Brynner , eds., Dark Remedy; the history of thalidomide (Perseus Publishing,  Cambridge Massachusetts, USA, 2001) at  page 65/66; L. Rogers,  ‘Having disabled babies will be ‘sin’, says scientist’, Sunday Times 04. July, 1999; E.  Stein Choosing the sexual orientation of children? Bioethics (1998), 12(1), 1-24; Royal College of Physicians Prenatal Diagnosis and Genetic Screening (London: RCP 1989); A. Caplan “If Gene Therapy Is The Cure, What Is the Disease?” in G. Annas and S. Elias (eds.) Gene Mapping: Using Law and Ethics as Guides (Oxford and New York: Oxford University Press, (1992)), pp.128–141; D. Coleman, Testimony Before the Constitution Subcommittee of the Judiciary Committee of The House of Representatives, April 29, 1996, available at http://www.mcil.org/mcil/mcil/testimon.htm; International Bioethics Committee of the UNESCO., Report of the IBC on Pre-Implantation Genetic Diagnosis and Germ-Line Intervention, SHS-EST/02/CIB-9/2 (Rev. 3), 2003 Paris: United Nations Educational, Scientific, and Cultural Organization. Available at http://unesdoc.unesco.org/images/0013/001302/130248e.pdf D.  Wertz  Eugenics Is Alive and Well: A Survey of Genetic Professionals Around the World, 1998 Science in Context, 11(3–4): 493–501, at p.501; ibid 4; L.K.Lockhart et al., “The stability of older adults' judgments of fates better and worse than death.” 2001Death Stud Jun; 25(4): 299-317; S. Macran & P. Kind  "Death" and the valuation of health-related quality of life.2001 Med Care Mar; 39(3): 217-27; J. Botkin, “Fetal privacy and confidentiality” 1995 Hastings Cent Rep.; 25(3): pp 36,37

[18] Sutton v United States, 1998  SUTTON et al. v. UNITED AIR LINES, INC. certiorari to the united states court of appeals for the tenth circuit  No. 97-1943. Argued April 28, 1999--Decided June 22, 1999

<http://caselaw.lp.findlaw.com/cgi-bin/getcase.pl?court=US&vol=000&invol=97-1943>;> MURPHY v. UNITED PARCEL SERVICE, INC. certiorari to the united states court of appeals for the tenth circuit

No. 97-1992. Argued April 27, 1999--Decided June 22, 1999 <http://caselaw.lp.findlaw.com/cgi-bin/getcase.pl?court=US&vol=000&invol=97-1992>,  

[19] Nippert and Wolff,  Ethik und Genetik:Ergebnisse der Umfrage zu Problemaspekten angewandter humangenetik 1994-1996 Ethics and Genetics Survey to problematic aspect of applied genetics 1994-1996, page 58, table 13 in Medgen 11 p53-61 1999

[20] Disability Awareness in Action (DAA), 1995 “Overcoming Obstacles to the integration of disabled people” a UNESCO sponsored report as a contribution to the World Summit on Social Development Copenhagen, Denmark

[21] G. Wolbring, “Disability rights approach towards bioethics” 2003  The Journal of Disability Policy Studies, 14(3), p 154-180

[22] See Thursday, September 19, 2002 The here and now By ANTHONY THANASAYAN scroll down to the article at http://www.bioethicsanddisability.org/Ant/antsept2002.html Thursday, July 17, 2003Struggle to be free By ANTHONY THANASAYAN http://www.bioethicsanddisability.org/Ant/antjuly2003.html

[23] Roberto Rivera y Carlo  “Targeting the Disabled,” Boundless, December 5, 2002, available at http://www.boundless.org/2002_2003/features/a0000685.html. Compare also J.  Harris  “Is There A Coherent Social Conception of Disability?” 2000 Journal of Medical Ethics, 26(2): 95-100  <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10786318&dopt=Abstract; P.Singer, “Response to Mark Kuczewski.“ 2001 American Journal of Bioethics 1(3): 55-57.

[24] UNESCO (2001) UNESCO UNIVERSAL DECLARATION ON CULTURAL DIVERSITY

Adopted by the 31st Session of the General Conference of UNESCO PARIS, 2 NOVEMBER 2001

http://unesdoc.unesco.org/images/0012/001271/127160m.pdf; see also UNESCO (2004) What is Cultural Diversity http://portal.unesco.org/culture/en/ev.php@URL_ID=13031&URL_DO=DO_TOPIC&URL_SECTION=201.html

[25] Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, G.A. res. 39/46, Annex, 39 U.N. GAOR Supp. (No. 51) at 197, U.N. Doc. A/39/51 (1984), entered into force June 26, 1987;see also Article 2 of the The Inter-American Convention to Prevent and Punish Torture Dec. 9, 1985, 25 I.L.M. 519 http://www.oas.org/juridico/english/Treaties/a-51.html; International Criminal Court Act 2001 (Elements of Crimes) Regulations 2001, ISBN 0 11 029705 9. Article 7 (1) (f) Crime against humanity of torture http://www.hmso.gov.uk/si/si2001/20012505.htm;

[26] Calgary Herald Page A10 Michelle Locke The Associated Press Nothing's too heavy for BLEEX

Exoskeleton a super strider Thursday, March 11, 2004 see also Berkeley robotic laboratory  http://www.me.berkeley.edu/hel/bleex.htm

[27] G. Wolbring  “The Social Construction of Health and Medicine” 2003  Health Ethics Today Vol 13 Number 1 page 5-6 http://www.phen.ab.ca/materials/het/het13-01b.html

[28] UNESCO World Conference on Sciences DECLARATION ON SCIENCE AND THE USE OF SCIENTIFIC KNOWLEDGE Text adopted by the World Conference on Science 1 July  1999. Definitive version http://www.unesco.org/science/wcs/eng/declaration_e.htm; UNESCO World Conference on Sciences,  SCIENCE AGENDA-FRAMEWORK  FOR ACTION Text adopted by the World Conference on Science 1 July  1999. Definitive version  http://www.unesco.org/science/wcs/eng/framework.htm