Whose right to choose? The 'new' genetics, prenatal testing and people with learning difficulties
Title:
Whose right to choose? The 'new' genetics, prenatal testing and people with learning difficulties
Author:
Ward, Linda M.
Appeared in:
Critical public health
Paging:
Volume 12 (2002) nr. 2 pages 187-200
Year:
2002-06-01
Contents:
Developments in the new genetics, including the Human Genome Project, have been the subject of much media coverage and some public debate. But the views of disabled people-- arguably one of the groups most affected by these developments--have, until recently, been largely absent from this public discourse. The rapid growth and routinization of prenatal testing has been subsumed under a rubric of 'improvements in prenatal care', even though the anticipated outcome of the increasing numbers of prenatal tests available remains selective abortion of fetuses detected as having an impairment. This paper sets out to surface and explore some of the fundamental issues, assumptions and contradictions hidden in 'normal practice' in this area, in particular the tension between two of the apparent goals of prenatal testing programmes: an extension of parental choice and a commitment to impairment prevention. It begins by reviewing in detail some of the critical arguments put forward by disabled people on the implications of the 'new' genetics and developments in prenatal testing for disability rights. It then considers the particular (and hitherto largely ignored) issues affecting people with learning difficulties (intellectual disabilities) who have been particularly excluded from the debate. One innovative initiative, aimed at sharing information on the subject with a group of people with learning difficulties and finding out their responses and opinions on policies and practice relating to prenatal testing and abortion, is described, along with some of the dilemmas involved in developing a strategy for developing and sharing accessible information on the subject to people with learning difficulties more widely. The paper concludes with a review of the issues and assumptions demanding further public attention in a society now officially committed, via the Disability Discrimination Act, to combating discrimination against disabled people and promoting their equal rights.
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