Genetic Technology and the UN Disability Convention

Medical debate on genetic technology such as food modification and cloning, has contributed to the emergence of the notion of the ‘perfect body’, which in some way works against minority groups such as people with impairments. Such debates have political implications on society’s policies and practices towards people with disabilities. For example, it is believed that the medical debate on euthanasia and eugenics have led to public acceptance and support of policies and practices that eliminate defective bodies or minds. Therefore, it is important to take cautious measures when utilising the outcome of genetic research in the social policy making process. The ongoing process of developing universal code of ethical practices in social and technological research impacting disabled people is important but equally important is the debating processes and their production (Hurst, 2000; DAA, 2000; 2001).

Genetic technology1 and disabled people

Genetic research has made many positive contributions to human life such as overcoming deadly diseases and maximising food production. This same technology however, has sometimes abused ‘subjects’ – whether human or animals – and is often involved in unethical practices. For example, researching vulnerable groups such as disabled people without consent (Diesfeld, 1999; Griffo, 2003). Historically, the implications of genetic research contributed to a widespread rejection of anything less than complete and perfect and therefore, those with impairments were consequently considered as lesser human beings. Thus, contributing to the creation of the notion of disability as deviance and disabled people as a different species whose lives are not worth living. This is then used widely to justify ‘euthanasia’ and the elimination of defective bodies (Wendell, 1996; Fitzgerald, 1999; Wilson, 2001; Barile, 2003; Albert, 2004).

Disability from the social perspective is a socially created notion and it is culturally produced by the disabling society. This however does not deny the physical and functional limitations of living with impairments. Therefore the solution according to many social policy theorists is sought in restructuring the society, especially the economy (Barton, 1996; Oliver and Barnes, 1998). Genetics technology and genetic research is not the solution to disabled people’s problems. In the contrary, they are contributing factors for creating disability when seeking perfection to bodies and minds. Disabled people’s movement had long rejected genetic research, and called for cautions when using such research (Shakespeare, 1995; Inclusion International, 1996; Albert, 2004). They contended that genetic research had negative impact on disabled people and that such research had been disempowering to disabled people. In brief, they argue that society should look beyond the individual and their biology (i.e. genes) into the wider social, political and environmental factors in line with the social perspective on disability.

Pfeiffer for example, links genetics debate concerning disabled people with the Social Darwinism theory which promoted ‘survival for the fittest’. This motto has been used as a point of reference in genetic engineering which aimed at improving the human genome to produce a ‘better’ and ‘fitter’ species (Pfeiffer, 1994; Suzuki, 2001). Social Darwinism argues that social policy should allow the weak and unfit to fail and die and this is justified as morally right (BCODP, 2002-3 . Ideas emerged from Social Darwinism such as abortions, euthanasia and including only the fittest people in public life, have led to segregating those with impairment from mainstream society and often subjecting them to discrimination and abuse (DAA, 1997; Wertz, 1999).

Social Darwinism argues the need for keeping fit and healthy bodies by means of improving food stocks. The increased population of the world gives justification for improved food production especially in developing countries. For this reason, food modification (Genetically Modified Food2 – GMF) has been an issue in genetic technology research during recent years. Yet, the focus continues to produce the best food to maintain fittest bodies and mind.

What went wrong in doing genetics research?

Research has an impact on the lives of those who are researched and has potential to act as a political tool in bringing social change in society. The impact of research can be twofold for this discussion. For example, some traditional research such as survey methods perpetuated the passivity of research subjects and served as an additional tool in their oppression. On the other hand, participatory and emancipatory research played an essential role in empowering research partners and helped in bringing them into the decision-making processes.

The problem arises when certain research method becomes a further means of exacting control over certain group such as disabled people and subjecting them to abuse and inequality such is the case with medical research (Bury, 1996). Previous research including genetic research often failed to take note of the wider relevance of research to all groups in the community as well as how research can include people and benefit them rather than exclude them. Genetic research, instead pointed the finger to the need for eliminating defective members when attempting to reach perfect and full production process in society. Disabled people were subsequently excluded from mainstream society on the ground of their biological genetic limitations.

The main disadvantage of genetic research is related to what is called genetic determinism – which means that human appearance and behaviour is entirely dependent on genetics and has little to do with social and economic factors. Society therefore, may decide to withdraw resources from people with genetic disorders because it sees these conditions as preventable (DAA, 1997). Equally, genetic research plays a role in conceptualising differences between people who have genetic disorders and those who don’t leading to negative attitudes and discrimination against them (Health Canada, 2004-5).

Discrimination associated with such genetic technology research may be seen in areas of employment, health care and insurance, especially in the developed world. The media are full of reported incidents where employers and insurance companies denied their services to disabled people on the ground of their genetics testing results (DAA, 1997; BBC, 2001). UNESCO’s Universal Declaration on the Human Genome and Human Rights has recognised this important issue in Article 8.

Similar to other technologies, genetic research will find its way to the developing world sooner or later within our global village. Right now, this technology is not too remote for disabled people in the developing world whose main concern is surviving. Disabled people in these countries will be affected by such technology in one way or another. Therefore, they have the right to be informed about genetic developments and the right to contribute to debates and policies concerning this issue. The failure of western bioethics to attend to cross cultural issues leaves people with impairments in developing countries unprotected and furthers their vulnerability.3

Developing human rights perspective: the right to life and participation4

As argued earlier, vulnerable groups such as people with impairments are under increasing abuse by modern technologies including genetic medical technology. This is perhaps due to a widespread dominance of a medical approach to disability and development.5 In countries lacking legislation to protect the rights of minority groups or countries with poor human rights records, disabled people are often at further risk of abuse by genetic technology such as selective abortion, and eugenics policies, etc.

There is a general agreement concerning the impact of genetics on people lives and this is coupled with caution towards cloning technology. In fact, the World Health Organisation condemned human cloning – which means the production of genetic duplication of another human where genetic code is copied deliberately from one person to make another person with the same genetic material (HGPI, 2003; Lexican EncycloBio, 2004). Their argument centred on social and ethical grounds in the sense that human cloning would be contrary to human dignity and it would violate the uniqueness of the human being as well as violating the rights of the child. The social implication of human cloning is seen in disturbing the relations within the family structure. Moreover, human cloning is expected to be used to reinforce rather than to combat society’s prejudices, and discrimination against vulnerable groups. Finally, WHO recognized the possibility of using this technology as a profit making industry – with purely commercial interests – and warned for the need for legal provisions in this area (WHO, 1997).

There are different views towards human cloning. Briefly, supporters of this technology argue of the potential medical benefits that will break new grounds and relief the suffering of many around the world who may be able to use this technology to improve their quality of life by improved medical treatment – including reproductive solutions – and disease prevention (DH, 2003). Their opponents however, criticise human cloning on a wide range of ethical and religious grounds that undermine the dignity and integrity of human beings and violate the natural rights of humans. For example, the Vatican Mission to the United Nations in 2003 has strongly opposed human cloning and supported a total ban on cloning research altogether (UN, 2003). Yet, there is no consensus on the morality of human cloning, even within secular research traditions (TCPS, 2002). The current risks of physical, social and psychological harm associated with cloning – physical harm to embryo as well as psychological harm to the right of the child and their family – is significant and may justify a prohibition on such experimentation (BBC, 2002).

Based on the analysis put forward, there is a pressing need to develop ethical codes of practice concerning genetic research relating to disabled people. UNESCO’s Universal Declaration on the Human Genome – which is based on a human rights approach to life – recognises the need for regulating genetic research for protecting the dignity and integrity of human beings (UNESCO, 1997). New power relations are necessary where genetic technology researchers place their skills at the disposal of disabled people who should be considered as equal partners in setting up the agenda of such codes and in deciding on their components including enforcement mechanisms to deal with abuses targeting disabled people. These mechanisms may include various measures such as social, economic, and political including legal measures. The recent debate over genetic issues in the discussion of the UN’s draft disability convention is a step in the right direction (UN ESA, 2004). Such debate can also benefit from the recently concluded consultations concerning UN cloning treaty negotiations (UN, 2001).

The international convention on disability

It is widely established that disabled people have often been marginalized from participation in development cooperation projects (PHOS, 2002; Yeo and Moore, 2003; Thomas, 2004; Hulme, 2004) especially in policy planning both nationally and internationally. This perpetuated their invisibility in society particularly in terms of their equal human rights. The new disability convention comes to bridge this gap and focuses specifically on the rights of disabled people (Rapley, 2003; Turmusani, 2003; Nagata, 2004).

The draft Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities (UN ESA, 2004) has recognised the importance of involving disabled people in debating genetic technology issues in its 4th Session of the Ad Hoc committee held in the United Nations HQ, New York between 23 August and 3 September 2004. In particular, this issue has been brought up by the Australian disability organisations (People with Disability Australia, Australian Federation of Disability Organisations and (Australian) National Association of Community Legal Centres. The current draft disability convention however, is still not fully developed and it will be further deliberated in the Fifth Session of the Ad Hoc Committee scheduled in January 2005.

One important issue discussed under the Australian proposal concerns the right to life. The Australian proposal suggested that this right – which is mentioned in article 8 of the convention – should be made more direct to deal with disabled people since the life of disabled people are more likely to be at risk compared with other people. In particular, the proposal concludes that genetic testing, genome project and other eugenic policies represent threat to disabled people. This has been in fact highlighted by the genome declaration – which is important to consolidate into the body of draft disability convention – concerning the impact of bio medical issues over the lives of disabled people (UNESCO, 1997). Eugenics, euthanasia, and recent developments in the cloning project are all issues that affect disabled people directly or indirectly (Pfeiffer, 1994; Shakespeare, 1995; Wendel, 1996, Fitzgerald, 1999).

The right to life however is inseparable from the right for a decent living especially for those with mental disability and those in institutions. This does not undermine the right for independent living and inclusion in community life (Mandesi, 2004). For preventing violation against human rights of disabled people, the Australian proposal suggested the inclusion of specific rights into the convention such as the right for freedom from torture or cruel, inhumane or degrading treatment or punishment. In the same spirit, the proposal has also noted a number of missing elements from the current convention including for example the right to liberty of movement (particularly for disabled immigrants and disabled refuges or disabled people in situation of emergency), and freedom of religion (expressed previously as spirituality).

Currently there is a passing reference in a footnote to biomedical and genetic research under Article 21 concerning the Right to health and rehabilitation. Specifically, item F of this article reads ‘Encourage research and the development, dissemination and application of new knowledge and technologies that benefit persons with disabilities’. In the footnote there is explanation which reads as follow: some members of the Working Group suggested there should be a specific mention of the fields of (bio) medical, genetic and scientific research, and its applications, and its use to advance the human rights of persons with disabilities. It is important that this debate be developed further.

Another important issue discussed in the 4th Session of the Ad Hoc Committee on disability concerns the mechanisms for the implementation and monitoring of the convention. Delegates emphasised the need for a separate article for this issue. The role of the state in collecting information necessary for formulating and implementing policies to give effect to this convention is highlighted bearing in mind legally established safeguards for data protection and internationally accepted norms to protect human rights and fundamental freedoms. The role of the State was similarly emphasised when discussing the concept of reasonable accommodation7 for disabled people according to Article 4.

In this connection, the Australian proposal has suggested specific mechanisms for monitoring the implementation of this convention at the national level including the establishment of independent commissioner or ombudsman to observe the rights of disabled people. At the international level, it is suggested the set up of a treaty monitoring body made up of disability experts to deal with States submitted periodic reports which outlines the progress in implementation of the convention at the domestic level. Moreover, establish a procedure for individual complaints against states violation of human rights of disabled people (including a framework for international cooperation) and a position and office of Special Rapporteur on Disability.

Given the universal scope of this proposed convention, cultural and socio-economic variations among societies in terms of level of development as well as national abilities to accommodate various conventions articles should be clearly noted in this convention. More emphasis should be given to research practices and the political impact of research approaches in the identification and removal of disabling barriers. Although there is a passing reference to genetic research in the discussion of 2004 Report, there is still clear absence of proper terminology referring to disability research as political tool for the empowerment of disabled people. This has also been voiced in the Australian proposal, which argued for a distinction in approaches to disability research from research that treats people with disability as problems to be eliminated to an approach that allow their emancipation.

Concluding remarks

Recent years have witnessed a global shift in the perception and treatment of disabled people towards a human rights perspective in line with the social model of disability mentioned earlier (Oliver and Barnes, 1998). This perspective views people with disabilities as not only subjects in the development process, but also partners and owners of the development process and its production (Wardak et al, 2003). The shift to the human rights perspective has been endorsed at the level of the United Nations, notably through the United Nations Standard Rules on the Equalization of Opportunities for People with Disabilities, 1993 which will have a supportive role to the future disability convention and the commitment of the UN to establish the Ad Hoc Committee in 2002 to address the issue of establishing a convention to protect and promote the rights of person with disabilities.

This account addresses disability and genetic technology issues within the context of the above draft disability convention. Specifically, it highlights how such technology influences disabled people in relation to their right to life, stereotyping and level of participation in society. The paper explores the wider and global implications of genetics advancement and calls for more safety measures to be put in place, given the widespread violations of human rights of disabled people worldwide (Despouy, 1993). There is need for a holistic approach to disability taking note that civil and political rights (freedom rights including the right to life and participation) and economic, social and cultural rights (equality rights) are interdependent and interrelated.

Article reprinted with permission from Disability World. A bi-monthly web-zine of disability news and views. Issue No. 26 December 2004-February 2005. See www.disabilityworld.org

Notes

1. Researcher specializes in disability and development issues with policy research experience. This brief analysis attempts to highlight few policy issues concerning genetic technology in the new draft disability convention. Yet, further research on this subject can enrich this analysis. Email: Turmusani@hotmail.com
2. The science of learning about genes is known as genetics. The Oxford English Reference Dictionary defines genetic as an adjective relating to genes or heredity. Gene on the other hand is defined as: a unit of heredity which is transmitted from parent to offspring (i.e. eye colour), usually as part of a chromosome (Pearsall and Trumble, 2002). Scientists use tools to find out about a person’s genes or to change them and this is known as genetic technology. The deliberate modification of an organism by manipulating its genetic material is called genetic engineering (DAA, 1997).
3. In this context, Genetically Modified Food involves a process of isolating genetic material from one organism and inserting a copy of it into another organism in order to produce a species with new characteristics (e.g. some crops have been genetically modified to make them resistant to weed killers, or to produce their own insecticide) (http://www.maf.govt.nz/MAFnet/schools/activities/johngmf.htm). Some argue that this process is unnatural and may involve long term damaging effects resulting from mixing unrelated organisms with each others (IFST, 2004).
4. Currently, traditional methods of food production in many developing societies are hampered by western technology. People have left their productive lifestyle and now live as consumers of imported western products. This situation creates debts, poverty, and disease, which often creates impairments. The relationship between healthy food and disability has been well established in recent years. For example there is increasing evidence of the relationship between malnutrition and impairment world wide (DAA/UNESCO, 1995; DFID, 2000; WHO, 2004).
5. Promoting the human rights of all people has direct impact on peace building and sustainable development. Protecting the rights of disabled people by specific provisions reduces discrimination and socio-economic and political exclusion (UNDP, 1998).
6. The medical needs of people with impairment should not justify the controlling practices of medical professionals over disabled people’s bodies by acts of sterilization and eugenics. On a larger scale, the exclusion of disabled people from mainstream society will be perpetuated unless and until disability issues are considered as inseparable component in the development agenda.
7. ‘Reasonable accommodation’ has been defined as: necessary and appropriate modification and adjustments not imposing a disproportionate burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on a basis of equality with others of all human rights and fundamental freedoms.’
   

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