Consequences

The history of the debate around bio/gene/nano-technology as it relates to disability shows a strong bias towards a medical, individualistic, intrinsic defect view of disability focusing on medical/technological cures without addressing societal components. People who promote the use of bio/genetechnology often denounce the social model of disability (Harris 2000; Singer 2001).

The medical model of disability can also show itself in court rulings, such as some recent US Supreme Court rulings. The Supreme Court ruled on the "definition of disability" in Sutton v. United Airlines (130 F.3d 893, 119 S. Ct. 2139), Albertsons Inc. v. Kirkingburg (143 F.3d 1228, 119 S. Ct. 2162), and Murphy v. United Parcel (141 F.3d 1185, 119 S. Ct. 1331), stating that the Americans with Disabilites Act does not cover those persons with correctable impairments.1 In other words, as soon as adaptations are available, all problems must be fixed and no protections through civil rights laws, such as the ADA, are allowed anymore. Not only that the ruling implies that disability is something which can be fixed through medical technological means. A social view of disability does not fit with the above ruling.

We see a disenfranchisement of disabled people from the equality/human rights movement. (Wolbring 1999, 2000, and 2001). So far, bio/genetechnology has led to an increase in discrimination against characteristics labeled as disabilities, as the following three examples illustrate.

First, we see a proliferation of legal cases involving wrongful life or wrongful birth suits (Wolbring, 2001,2002a). Wrongful life suits are only accepted if the child is disabled. And wrongful birth suits are specific by now for disability with special rulings whereas cases based on non-disability are called wrongful pregnancy. The remedies in the case of wrongful birth/pregnancy cases are quite different. The following quotations illustrate the logic of such cases.

Two other justices based their agreement of wrongful life suits on the view that the physicians wrongful life liability towards the disabled infant as resting on the right to life without a handicap. Thus the damage is measured by comparing the actual impaired life of

1 National Council on Disability USA, 2000; Civil Rights, Sutton v. United Airlines, Albertsons Inc. v. Kirkingburg, and Murphy v. United Parcel (http://www.ncd.gov/newsroom/publications/policy98-99.html#1).

the plaintiff to a hypothetical unimpaired life (CA 518, 540, 82 Zeitzoff versus Katz (1986) 40 (2) PD 85 Supreme Court of Israel (482); Shapiro 1998).

...in essence ... that [defendants] through their negligence, [have] forced upon [the child] the worse of ... two alternatives, ... that nonexistence — never being born — would have been preferable to existence in the diseased state (Soeck v. Finegold, 408 A.2d 496(Pa. 1970)).

Thus the legislature has recognized," the judge said, "as do most reasonable people, that cases exist where it is in the interest of the parents, family and possible society that it is better not to allow a fetus to develop into a seriously defective person causing serious financial and emotional problems to those who are responsible for such person's maintenance and well-being (Strauss 1996).

Second, anti-genetic discrimination laws cover discrimination on genetic characteristics which might lead in the future to 'disabilities' in a medical sense but are for the time being asymptomatic. In essence, the feature of genetic discrimination is the use of genetic information about an asymptomatic disabled person. The vogue for the establishment of an Anti-Genetic Discrimination law for asymptomatic disabled people highlights one other reality, namely that symptomatic disabled people are excluded from exactly the benefits the Anti-Genetic Discrimination laws try to address. With these new laws these symptomatic disabled people will still be discriminated against whereas the asymptomatic ones will be safe. Not only that, ability becomes a measure to justify these new laws, as the following statement from the American Civil Liberties Union illustrates.

The ACLU believes that Congress should take immediate steps to protect genetic privacy for three reasons. First, it is inherently unfair to discriminate against someone based on immutable characteristics that do not limit their abilities... (ACLU 2000)

In sum, the ACLU believes that Americans should be judged on their actual abilities, not their potential disabilities. No American should lose a job or an insurance policy based on his or her genetic predisposition. (ACLU 2000)

A third consequence of the current mindset is differential use of genetic predictive testing. We see an Animal Farm Philosophy in regards to what to test for. Testing to eliminate any so called disability, disease, defect is acceptable but testing to determine and select on the basis of a characteristic like sex is not (Wolbring 2000, 2001).

Where should we go from here? To prevent further stigmatization, recommendations such as those quoted below from the UNESCO World Conference on Sciences 1999 conference should be implemented.

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..."

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.

Thus, it is essential that the greatest possible diversity of people participate in the development of convergent technologies and contribute to the associated sciences:

17. Scientists, research institutions and learned scientific societies and other relevant nongovernmental 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.

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 (UNESCO 2000)

We should strive to eliminate able-ism and promote the acceptance of diversity in abilities for the sake of humankind as the best defense against gene-ism, which might affect 60% of society according to a New Zealand study. This acceptance of diverse abilities is actually also needed for the thriving of assistive technologies. For example, if an assistive technology leads to better vision than humankind has normally, should we discard the now majority of people who are less able? Or should we force all to use the new adaptive devices? Or should we demonize the ones who are more able?

The labeling of people and groups within a medical disease defect model against their will is unacceptable. In essence every scientist whose work has societal consequences has to become a societal activist to prevent these consequences.

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