Preface

In November 1994, DAWN Canada (Disabled Women's Network) and the National Action Committee on the Status of Women (NAC) co-sponsored a conference which focused on reproductive technologies and their implications for women's equality and the recognition of disability rights. The Conference represented a landmark event in the history of the Canadian women's movement in that it was the first official forum to examine reproductive technologies from both a disability rights and feminist perspective.

Women with disabilities were particularly concerned about genetic technologies and their potential to reinforce discriminatory attitudes about life with a disability. Other participants worried that imposing restrictions on the use of genetic technologies could translate into restrictions on a woman's access to abortion services. One of the major outcomes of the Conference was the recognition by advocates of each perspective that there is a need to construct a critical analysis of genetic technologies which upholds both disability rights and reproductive rights as compatible interests. This is a complex undertaking, and while the dialogue continues, a collaborative strategy has yet to emerge.

The discussions that took place at the DAWN Canada NAC Conference inspired the Research Team preparing this Paper to find a way to carry on the dialogue between disability rights activists and feminists. Consequently, this Paper was prepared with two objectives in mind. First, to advance the development of a united strategy between feminists and disability rights activists. Second, to offer some initial thoughts on policy options which could be implemented to regulate genetic technologies in a manner that respects and upholds both human rights and women's reproductive autonomy.

Introduction

"Biomedical researchers are currently redefining human geography. These modern explorers are elaborating a new human map, based on genes, that is likely to alter our views of the world - and our place in it - even more profoundly than did the maps generated by Columbus and other fifteenth- and sixteenth-century explorers. More important, this newest expression of territorial expansion and colonization, a process I call geneticization…is likely also to alter our perceptions of self and other, of normality and abnormality, particularly in the area of procreation. This can be seen most clearly in the consideration of the impacts of prenatal genetic testing and screening on women."

Thanks to the work on the Human Genome Project and the media reports it has attracted over the past several years, the public has received a steady stream of information on the latest gene to be discovered by science. Such announcements are generally greeted with enthusiasm, and the hope that genetic solutions will save us from our human frailties. But, this hope may be overly optimistic and ambitious. While genetic technologies may offer a few more keys to unlock the genetic puzzle, they have not necessarily produced the solutions required to solve the puzzle.

For example, although hundreds of human genes have been identified and mapped, in many cases, a corresponding cure or treatment regime has not yet been developed. Moreover, although many common diseases are suspected of being genetically linked, in most cases, the risk must be augmented by other genetic or environmental factors in order for the disease to occur. Nor does the detection of a chromosomal disorder, such as Down's Syndrome, predict the severity with which the syndrome will be expressed.

Advocates of new reproductive technologies, particularly prenatal technologies, argue that this technology will expand women's reproductive choice and decrease the incidence of disability in society. This argument is over simplistic at best, and belies the significant social and ethical implications underlying such technologies for women's reproductive autonomy and the equality rights of women and men with disabilities.

It is possible that prenatal diagnostic testing can offer women more control over the occurrence of the birth of a disabled child by providing relevant information about the genetic status of the fetus during pregnancy. However, because there are no therapeutic interventions available for the majority of conditions which prenatal testing detects, the options open to women following a positive diagnosis consist of preparing for a life with a disabled child or terminating the pregnancy.
Negative perceptions about a life with a disability, combined with the difficulties in obtaining adequate social supports may cause a woman to believe that her only real choice is to terminate her pregnancy.

Disability rights activists harshly criticize the intent of prenatal testing and the more often than not, follow-up procedure of aborting disabled fetuses. They are suspicious of the manner in which prenatal testing has been allowed to outpace therapeutic strategies. They argue that gene location is the means for a strategy of eugenics by eliminating defective fetuses.

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