International Center for Bioethics, Culture and Disability

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Rationale for the establishment of an International Center for Bioethics, Culture and Disability

Introduction

Science and technology (S&T) have had throughout history, and will have in the future, both positive and negative consequences for humankind. The goals for which S&T are advanced are value-laden, reflecting the cultural, economical, ethical, spiritual and moral framework of society. Technology follows social norms. S&T embodies the perspectives, purposes, prejudices and objectives of society, and of powerful social groups within society. Bio/gene-technology is sold among other things as a tool for fixing disabilities, impairments, diseases, and defects, (DIDD) and diminishing suffering and as a tool to free us from the "confinement of our genes"(genomic freedom). Nanotechnology is linked to the promise of bio/gene-technology by promising to make bio/gene-technology "diagnostic and therapeutic" applications such as genome sequencing, detection of gene expressions and genetic profiling more efficient (National Science Foundation, (2001) p 7 Societal Implications of Nanoscience and Nanotechnology" NSF Report, March 2001 http://www.wtec.org/loyola/nano/societalimpact/nanosi.pdf). Nanotechnology goes a step further by offering the potential to free us from the "confinement of our biological bodies" (morphological freedom) through the use of non-biological 'assistive' technologies such as prosthetic limbs that adjust to the changes in the body, more biocompatible implants, artificial retinas or ears, neural prostheses and the "spinal patch," to just name a few (National Science Foundation, USA, (2001) p 41 Societal Implications of Nanoscience and Nanotechnology" NSF Report, March 2001 http://www.wtec.org/loyola/nano/societalimpact/nanosi.pdf). Taken to the extreme, nanotechnology offers the "hope" that the mental structure and consciousness of a person could be transferred to an external carrier (uploading). This would make it possible to completely avoid biological deterioration (aging, damage), allow the creation of backup copies of the mind, very profound modifications and post biological existence."

These promises raise quite a few questions. Which and whose values and perceptions are reflected in the definitions of DIDD and the attached 'suffering'? Which and whose values and perceptions are reflected in the choice of solutions for the 'problem' of DIDD? How do the predominant societal values and perceptions that define DIDD, its attached suffering, and the proposed solutions affect the self-esteem and self-understanding of the people viewed as suffering from DIDD? Does the self-perception of people who are labeled as DIDD (the afflicted) match the perception that the non-afflicted have of the 'afflicted'? Do 'afflicted' people define their 'problems' and the solutions to them in the same way as the 'non-afflicted' do? Do the 'afflicted' and the 'non-afflicted' have the same values and perceptions about what constitutes a good life?

 

Non-Involvement of Disabled people

The only way to answer the above questions is to involve the 'afflicted' in the debates around the governance of science and technology. However the views of disabled people and their families (the afflicted, the experts) are rarely heard or even blatantly ignored in the shaping of the research agenda, government policies and public debate and education as they relate to the development and use of S&T in general and the use of bio/gene/nanotechnology in particular. Furthermore disabled people are also hardly involved in the bioethic discourse despite the fact that perception of disability shapes the debate of many bioethic issues beside bio/gene/nanotechnology such as End of life decision-making, the allocation of healthcare resources, access to clean water and sanitation, research on non-competent people, questions of futile care, selective non-treatment of newborns, debates about personhood, mercy killing and disability-adjusted life year of which all of them have significant implications for disabled people.

The majority of disabled people are excluded from the debate about issues that affect their future and even their being on many levels. Their living conditions, low income, low levels of education and employment, and inaccessible environment ensure that the majority of disabled people are essentially rendered invisible. Disabled people are not present on most government committees and decision/policy-making bodies (international and national) that influence the development of science and technology. The disabled also have not gained access to academia in sufficient numbers to have an influence. It is difficult to convince universities that disability is more than just a medical problem. The field of disability studies (exploring the social dimension of disability) is only slowly emerging. Perhaps even more striking is that the field of bioethics, which is supposed to look at the societal implications of biological and medical sciences lacks for the most part the presence of disabled people and a disability rights approach to bioethic issues e.g. the World Congress of Bioethics in the UK in 2000 was the first one where disabled people had their own panel on Disability and Ethics (organized by Gregor Wolbring). And the World conferences after that again ignored a disability angle on bioethics. Reality is that disabled people have to defend their non medical view of themselves against many bioethicists. Civil society organizations (CSOs) also tend to exclude disabled people, for two major reasons: it does not occur to many CSOs that there might be a disability perspective to the issues they work on (globalization, S&T evaluation, clean water and sanitation, bioethics issues, biodiversity....) and the CSOs' membership adheres often to the medical model of disability rather than seeing disabled people within a social justice cultural framework ( a view common within society) due to their lack of involvement with disabled people.

 

Consequences of the Exclusion:

There is a social aspect to everything and disabled people have a major interest that issues are not debated without their voices. Due to these exclusions, disabled people are denied their chance to tell their account of disability and what they view as acceptable solutions. The a priori assumption that life with a disability is not worth living is propagated without being challenged. This makes is difficult if not impossible to see able-ism in the same light such as racism, sexism, age-ism, homophobia, etc. and therefore to see disabled people in the same human rights social justice framework than others.

Objective of the Center (Mission statement)


· To help people understand the consequences of the debate of bioethical and related issues for disabled people and other marginalized groups from around the globe
· To facilitate the debate of the implication of bioethical and related issues for people with disabilities and other marginalized groups around the globe.
· To familiarize disabled people and other marginalized groups with the debate around bioethical and related issues and to help them to develop the knowledge and capacity to take part and to become an equal in these debates around the globe.
· To expose non disabled people and organizations who are debating bioethical and related issues to a disability approach towards bioethical and related issues around the globe

This goal is also in sync with recent recommendations of the UNESCO World Conference on Science where we read in the resolution of the conference among other things

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". . .

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

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.

Tools to fullfill the objectives

1) further development of this webpage

2) development of tutorials

3) increased use of listserves

4) funding the appearance of disabled people at conferences/ meetings which deal with bioethical issues (in the case that the organizers do not have the money)

5) development of a resource list

6) finding ways to increase the knowledge of disabled people on bioethical issues particular in non western countries.

7) finding ways to bring marginalized and nonmarginalized groups together to debate bioethics issues and the impact on the marginalized groups

8) funding of research projects