By Gregor Wolbring
I. Aims and Scope of a Declaration on Universal Norms on Bioethics
Every person’s life is touched by bioethics issues including disabled people. End of life decision-making, the allocation of healthcare resources, the use of genetic technology (gene therapy, genetic testing, genetic enhancement), research on non-competent people, questions of futile care, selective non-treatment of newborns, debates about personhood, mercy killing, disability adjusted life years and global burden of disease concepts, non-genetic therapy, testing and enhancement, ethics of access to clean water and sanitation, the convergence of nanotechnology, biotechnology, information technology and cognitive sciences, the governance of science, technology and biomedical research and it’s application to just name a few, are all issues that have significant implications for disabled people their quality of life, their self identity and how they are perceived and acted on by the so called non-disabled. Therefore a disabled people’s rights approach to bioethics is essential to be integrated into any ethical guidelines.
I.1 How, in your opinion, could the declaration contribute to better assess the ethical implications of scientific progress and its applications?
Assessment of ethical implications:
We do not think that the declaration can help assess the ethical implications of scientific progress and it’s applications. In order to be able to assess ethical implications this declaration would have to cover every single application possible and anticipate every issue and application arising in the future. That seems to be unrealistic. The declaration should provide ethical guidelines which can be applied to every application and to the process of the governance of science and technology and provide guidance as to what is ethical or unethical on all levels (policy-makers, scientific community, academic circles, media, society, etc).
At its 32nd session in October 2003, the General Conference of UNESCO considered
that it was “opportune and desirable to set universal standards in the field of bioethics with due regard for human dignity and human rights and freedoms, in the spirit of cultural pluralism inherent in bioethics” (32 C/Res. 24).
In order to make the cultural pluralism of bioethics a reality it has among other groups to include disabled people which it doesn’t as of yet.
If one looks at how cultural pluralism would be inclusive of disabled people one has first to recognize that different self-perceptions by disabled people, different perceptions of disabled people, different interpretation of the relationship between disabled people non-disabled people and the environment, different definitions of the problems, and different solutions exist.
However if we look at the debate around bioethics issues including documents from the UNESCO International Bioethics Committee so called disabilities and disabled people are treated single minded within a medical model. The demand by disabled people to accept also other views of disability such as the social model is normally ignored or even rejected.
It is of utter importance that the declaration guides towards a culture of bioethics which allows social groups (of which disabled people are one) to be respected for the cultural identity they choose and not imposes the views of one group onto another group. This would fit with the fact that according to the UNESCO International Declaration on Cultural diversity social groups should be allowed to choose cultural identities of their choice.
The ethical two tiered system of medical versus social reasons:
Beside the need to accept the different self identities of disabled people the universal norms in bioethics also have to discard a very problematic ethical approach as it pertains to disabled people. In this approach, ethical approval is ensured if something is done for medical reasons whereas something is ethically problematic if done for social reasons. For example sex selection is seen as ethically problematic as it is judged to be done for social reasons without any medical necessity. However disability (medical model) deselection is seen as acceptable as it is seen done for medical reasons. This approach makes the acceptance of a disability rights approach-an approach which perceives disability within a social justice framework rather than a medical one-impossible. This two tiered reasoning is also very problematic because the very concept of what is a medical condition is a societal construct. In some settings being gay is seen as a disease and in other settings it is seen as a disease. Taking into account the ambiguity of the concept of disease and medical condition and taking into account the UN Convention of disabled people rights in preparation and the UNESCO declaration on cultural diversity it is essential that the universal norms in bioethics discard this two tiered ethics.
I.2 Should the declaration be limited to human beings and why?
We think one has to distinguish between two different areas here a) whether we cover non human life issues such as animals and the environment and so forth and b) whether we limit the declaration to born human beings or whether we include different stages of human life in these universal norms in bioethics. There are pro and cons for a) on which we don’t want to elaborate. We believe that b) should include all stages of human life. Reality is that science and technology interventions and many bioethics issues increasingly are not just limited to born human beings but are targeting different stages of human life. For example if we believe that genetic enhancement is wrong it should be wrong independent of whether we do it on the level of the embryo, a fetus, or a human being.
To give you another example. The avoidance of discrimination is seen as one ethical principle by many. However so far we treat discrimination as if it is happening just on the level of a born human being whereby discrimination against a certain characteristic can really happen on the level of a cell, a zygote, an embryo, a fetus, a person, or a human being e.g. if we prohibit sex selection but not disability deselection this disability discrimination plays itself out on the level of the embryo and the fetus but not really on the level of a human being.
I.4 If the answer to I.2 is no, what other issues could be covered
See our explanation under 1.2
II. Structure and Content of a Declaration on Universal Norms on Bioethics
II.1 How should the declaration be structured? Should it include a preamble?
Yes it should contain a preamble as the preamble can link the declaration to other important documents and can set some general ethical guidelines. The preamble should in particular acknowledge UN human rights instruments in particular the UN convention on the rights of disabled people the UNESCO World conference on sciences documents, and the UNESCO declaration on cultural diversity.
Should it be organized into sections? If yes, please indicate which sections could be included and why (general provisions, health care, scientific research, public consultation, international cooperation, education and awareness-raising, promotion and implementation, etc.)?
This depends on the length one wants the declaration to be. We think a declaration should be written in such a way that it can apply to many areas. However whether or not we have sections, we need a Glossary which defines all the terms used in the declaration.
II.2 Which fundamental principles should be reaffirmed in the declaration
Autonomy, benefit sharing, confidentiality, cultural diversity, freedom of research, free and informed consent, justice, non-discrimination, respect for human dignity, respect for privacy, solidarity between human beings, respect for human beings, inclusive culture of deliberation. These are just a few fundamental principles which should be affirmed in the declaration. However as the above example of the term discrimination shows it is of the highest importance for disabled people that the terms are defined in a very concise way and are not used in a detrimental way against disabled people.
II.3 In reaffirming these fundamental principles, should the declaration state only general principles of broad application (such as the general principle of consent in research) or should it attempt, where appropriate, to define a more detailed framework (for example, requirements for consent in specific cases)?
More details where needed. Once we know what areas the declaration will cover we will be able to add in which case we feel a more detailed framework is warranted.
II.5 Whatever the structure and scope of the declaration may be, should it, where possible, provide guidance on specific subject areas? If yes, which subject areas could be explicitly mentioned and why?
Problem with listing particular areas is to decide which to mention. If the declaration should be user friendly it should be as concise as possible and the ethical guidance should be usable in many areas and for future developments of ethical contention which can not be listed in this declaration like how to deal with sentient beings developed through artificial intelligence.
However if we guide on particular areas the list given on the webpage of the UNESCO bioethics section for this declaration is a good starting point.
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 Dr. Gregor Wolbring wrote this intervention on behalf of DPI. He is a member of the Executive of the Canadian Commission for UNESCO, a Biochemist at the Dept. of Biochemistry and Molecular Biology Faculty of Medicine University of Calgary, Canada, a Adjunct Assistant Professor for bioethical issues at the Dept. of Community Rehabilitation and Disability Studies Faculty of Education University of Calgary, Canada, a Adjunct Assistant Professor with the John Dossetor Health Ethic Center, University of Alberta, Edmonton, Canada, the Founder and Executive director of the International Center for Bioethics, Culture and Disability webpage: http://www.bioethicsanddisability.org , and Founder and Coordinator of the International Network on Bioethics and Disability. If you have questions in regards to this intervention please e-mail Dr. Wolbring at firstname.lastname@example.org
 The medical/patient perception of disability sees disabled people as inherently defect and subnormal as people with an inherent medical problem that leads to a low quality of life for the person and his or her relatives in need of fixing. Within the ‘medical model of disability’ management of the ‘disability’ is aimed at cure, prevention, or adaptation of the person to the norm (e.g. by provision of normative assistive devices).
The transhumanist perception of disability does not see the ‘disabled person’s body’ as subnormal. It rather sees the human body in general as deficient in need of not just fixing to the norm but in need of augmentations above the norm with the addition of new abilities improvement. It believes in improving any human body if possible whether it’s one of disabled people or that of the so-called non-disabled.
The social/human rights perception of disability sees disability mainly as a socially created problem and principally as a matter of the full integration of individuals into society. This model sees the biological reality of the person as a variation of being not deviation 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. The social model demands social change, which at the political level becomes a question of human rights, where able-ism is comparable to racism, sexism, age-ism, homophobia and other other-isms see 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)
 International Bioethics Committee of the UNESCO (2003) Report of the IBC on Pre-Implantation Genetic Diagnosis and Germ-Line Intervention, SHS-EST/02/CIB-9/2 (Rev. 3), April 24, 2003 (Paris: United Nations Educational, Scientiﬁc, and Cultural Organization), Available at http://unesdoc.unesco.org/images/0013/001302/130248e.pdf.
Rivera y Carlo “Targeting the Disabled,”
 “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” in 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
Universal Declaration of Human Rights, the International Covenants on Human
Rights International Covenant on Economic, Social and Cultural Rights, the
International Covenant on Civil and Political Rights, the International
Convention on the Elimination of All forms of Racial Discrimination, the
International Convention on the Elimination of All Forms of Discrimination
Against Women, the Convention Against Torture and Other Cruel, Inhuman or
Degrading Treatment or Punishment, the Convention on the Rights of the Child,
and the International Convention on the Protection of the Rights of All Migrant
Workers and Members of their Families, the Standard Rules on the Equalization
of Opportunities for Persons with Disabilities”. Official Records of the General Assembly,
Forty-eighth Session, Supplement No. 49 (A/48/49), vol. 1, chap. VII, General
Assembly resolution 48/96, annex, of
 http://www.un.org/esa/socdev/enable/rights/ahcwg.htm and for the latest Draft Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities http://www.un.org/esa/socdev/enable/rights/ahcwgreportax1.htm