Disability, Human Rights and Contemporary Genetics

Abstract

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.