Disability, Human Rights and Contemporary Genetics

Abstract

In recent years, disabled people have been organised as a new social movement to promote their civil and human rights. At the same time, advances in genetic knowledge, especially the development of prenatal and preconception screening programmes, offer active selection against the birth of people with genetically based disability. Many disabled people are deeply concerned that selective genetic technologies bias the social context in which reproductive choices are made, implicitly questioning the right of disabled people to exist. However, it can be argued that bodily variation, even in the forms that lead to disability, should be acknowledged as part of the diversity of human embodiment. Steps in this direction can be seen in the language of human rights instruments such as the United Nations Convention on the Rights of Persons with Disabilities. Genetics can offer support for the idea that genotypic and phenotypic diversity is a natural and positive part of human societies.

Key Concepts:

  • During the last quarter of the twentieth century, disabled people began to be organised as a new social movement to promote their civil and human rights. As a result, many of the barriers to full participation of disabled people in society are beginning to be dismantled.

  • At the same time, advances in genetic knowledge have led to the growing use of technologies of genetic testing, in prenatal and preconception genetic screening programs as well as postnatal testing.

  • Genetics therefore holds out the promise of improving population health by reducing/eradicating genetically based disability, through selection against the birth of people with disabilities rather than through the amelioration or cure of genetic conditions.

  • The disability rights movement and genetics therefore represent two distinct ways of thinking about the biological meaning of disability.

  • Although many disabled people welcome medical and specifically genetic research, others have concerns about the way that the ready availability of genetic testing and screening changes the context in which reproductive decisions around disability are made.

  • Some people argue that bodily variation, even in the forms that lead to disability, should be acknowledged as part of the diversity of human embodiment.

  • Genetics offers some support for the idea that genotypic and phenotypic diversity is a natural part of biological populations and of human societies.

  • A number of recent legal instruments, including the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), seek to protect the human rights of disabled people. Nevertheless, within the disability community there is concern that selective genetic technologies challenge the fundamental right of disabled people to exist.

  • Issues raised by the debate on variation and genetics will become increasingly important for nondisabled people as well, as the genetic factors that play a role in both normal variations and behaviours and common diseases are uncovered.

Keywords: disabled people; prenatal genetic screening; preconception genetic screening; human rights; unconvention on the rights of persons with disabilities; eugenics; discrimination

References

Abberley P (1987) The concept of oppression and the development of a social theory of disability. Disability, Handicap and Society 2: 5–21.

Asch A (1999) Prenatal diagnosis and selective abortion: a challenge to practice and policy. American Journal of Public Health 89(11): 1649–1657.

Barnes C (1998) The social model of disability: a sociological phenomenon ignored by sociologists? In: Shakespeare T (ed.) The Disability Reader: Social Science Perspectives, pp. 65–78. London: Cassell.

Campbell J and Oliver M (1996) Disability Politics: Understanding Our Past, Changing Our Future. London, UK: Routledge.

Marteau TM and Drake H (1995) Attributions for disability: the influence of genetic screening. Social Science and Medicine 40: 1127–1132.

Oliver M (1990) The Politics of Disablement. Basingstoke: Macmillan.

Oliver M (1996) Understanding Disability: From Theory to Practice. Basingstoke: Macmillan.

Paul D (1992) Eugenic anxieties, social realities and political choices. Social Research 59(3): 663–683.

Rapp R (2000) Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America. New York: Routledge.

Rehmann‐Sutter C (2002) Genetics, embodiment and identity. In: Grunwald A, Gutmann M and Neumann‐Held EM (eds) On Human Nature. Anthropological, Biological, and Philosophical Foundations, pp. 23–50. Berlin: Springer.

Rogers L (1999) Having disabled babies will be ‘sin’ says scientist. Sunday Times, July 4, pp. 28–29.

Scully JL (2002) A postmodern disorder: moral encounters with molecular models of disability. In: Corker M and Shakespeare T (eds) Disability/Postmodernity: Embodying Disability Theory. London: Continuum.

Scully JL (2008) Disability Bioethics: Moral Bodies, Moral Difference. Lanham: Rowman & Littlefield.

Scully JL (2012) The convention on the rights of persons with disabilities and cultural understandings of disability. In: Anderson J and Philips J (eds), Disability and Universal Human Rights: Legal, Ethical, and Conceptual Implications of the Convention on the Rights of Persons with Disabilities (SIM Special 35), (in press). Utrecht: Netherlands Institute of Human Rights [SIM].

Shakespeare T (1999) ‘Losing the plot’? Medical and activist discourses of contemporary genetics and disability. Sociology of Health and Illness 21(5): 669–688.

Shakespeare T (2006) Disability Rights and Wrongs. Abingdon: Routledge.

Thomas C (2007) Sociologies of Disability and Illness. Basingstoke: Palgrave Macmillan.

Vanier J (1999) Becoming Human. London, UK: Darton, Longman and Todd.

Further Reading

Gabe J and Conrad P (2000) Sociological Perspectives on the New Genetics. Oxford, UK: Blackwells.

Kerr A and Shakespeare TW (2001) Genetic Politics: From Eugenics to Genome. Cheltenham, UK: New Clarion Press.

Morris J (1991) Pride against Prejudice. London, UK: Women's Press.

Parens E and Asch A (2000) Prenatal Testing and Disability Rights. Washington DC: Georgetown University Press.

Contact Editor close
Submit a note to the editor about this article by filling in the form below.

* Required Field

How to Cite close
Scully, Jackie Leach(Jul 2012) Disability, Human Rights and Contemporary Genetics. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005214.pub2]