Prenatal Technologies May Not Offer Reproductive Choice

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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.

The Medicalization of Disability
Given the rise of medical influence during the past century, the medical profession has been well-placed to exercise a powerful role over the lives of persons with disabilities. Medical professionals and scientists have historically characterized disability as a defect, deficiency, dysfunction, abnormality, failing or medical "problem" that is located in an individual. As a result, societal (and medical) attention is directed at fixing or curing the individual or returning the person to "normality." Where so-called “normality” is not achieved, attempts are made to make the person as "normal" as possible.

The "medicalization" of disability espouses an ideology of the individual in that it affixes the "problem" of difference to the body of the disabled individual. Under this ideology, the responsibility for any and all disability-related barriers is placed on the individual, rather than on the social institutions which have excluded persons with disabilities by maintaining barriers to their full participation.

Genetic technologies and the ideology of geneticization threaten to reinforce the traditional view of disability as a medical problem. Language such as defect, abnormality and congenital malformation is sometimes used to describe fetuses in which a disability has been detected. These labels demonstrate that once again, disability is being framed in the context of individual pathology, rather than in a social context.

Prenatal technologies will not eliminate disability from society. The Council of Canadians with Disabilities estimates that only 3% of genetic conditions may be affected by gene therapy. Eighty-five percent of adult disability is caused after the age of 13, and more than 90% of infant disability is because of social and not genetic causes. A person is far more likely to become disabled because of situations such as ageing, illness, unsafe working conditions, toxic environments, violence, poverty, lifestyle choices, poor nutrition, etc. Consequently, despite the hype offered by the media and the scientific community, it is unlikely that gene identification will significantly reduce the incidence of disability or improve the social status of persons with disabilities.

Not only has disability been regarded as the problem of the individual, it has also been characterized as a medical problem requiring a medical solution; that is, the care and intervention of professionals such as doctors, social workers and rehabilitation counsellors. Consequently many people with disabilities have been isolated from society, and forced to live in conditions of dependency and oppression. Framed as an illness or individual defect, disability has been ascribed a negative value.

People with disabilities are disturbed by prenatal testing because, to them, it represents a return to an individual-based, medical model of disability at a time when they have only just begun to experience the dignity of rights and the hope for a barrier-free society. Their apprehension about prenatal testing arises from a history of eugenic practices that have contributed to the brutal oppression of disadvantaged groups. For example, during the last century, people with disabilities were subjected to non-therapeutic sterilization, institutionalization, and, in Nazi Germany, mass killing.

It can be argued that historically, disability-based discrimination occurred because society was, to a large extent, uninformed and uneducated about the value of human diversity, and in particular, about the potential of people with disabilities. People with disabilities are concerned that genetic technologies and their capacity to be used by science to designate “good” and “bad” genes, run the risk of replicating the discriminatory mistakes of our past.

It is conceivable that, in a respectful environment, prenatal technologies could offer positive benefits in the form of new treatments and increased support for reproductive choices. However, to preserve the integrity of our humanity, we must listen to the views of those most affected, and we must use the lessons of the past to guide us into the future.

The Relationship of Disability Rights and Women’s Reproductive Choice
It is women who are subjected to prenatal testing, and women who must make sense of, and cope with the results of such testing.

As more and more genetic conditions become amenable to prenatal diagnosis, it is not unreasonable to imagine that society generally, and the medical profession specifically, will place enormous pressure on women to undergo such testing and to follow through with an abortion when the results are positive. This process has the potential to subtly, but effectively, shift the responsibility to ensure healthy babies from society to the private choices of women.

Traditionally, women have assumed the responsibility of caring for the health of the family. Prenatal testing now conveys the message that women are also responsible for protecting the well-being of society by aborting fetuses found to be unsatisfactory. In other words, women who knowingly choose to give birth to a baby with a disability may be accused of weakening or burdening society. Prenatal testing, therefore, has the power to promote the compulsory abortion of disabled fetuses. Although no government would probably ever dare, at least not in the foreseeable future, to require the systematic abortion of disabled fetuses, the medical, social and economic pressures compelling such a practice are so powerful that refusing it may not be a realistic choice for women.

In fact, prenatal testing is often cast as a means of meeting a public health need. The economic costs that disabilities place on the social welfare and medical systems are relatively high, and testing and selective abortions are presented as a very cost-efficient way of reducing the incidence of disability on society. Implicit in this formation is that making use of prenatal testing technology is the act of a responsible citizen and mother-to-be. Women who do not comply with testing, or who decide to continue with a pregnancy after a diagnosis of fetal disease or disability are viewed as socially irresponsible, irrational and selfish.

If a woman was assured that she would receive the emotional, social and financial support necessary to ensure the nurturing of her child, and if she was confident that her child would be accepted as a valued member of the community, whatever his or her genetic make-up, more women might choose to forego testing. These avenues of intervention, along with increased acceptance of people with disabilities, provide an alternate route for addressing the social and economic barriers that confront families of children with special needs. These alternative approaches would also address the issues in such a way that the responsibility for “curing the problems of society” would not rest on the shoulders of childbearing women.

From The Ethical and Human Rights Implications of Prenatal Technologies: The Need for Federal Leadership and Regulation by Yvonne Peters and Karen Lawson. For a full copy of the study, contact The Prairie Women’s Health Centre of Excellence, (204) 982-6630 or visit: www.cewh-cesf.ca/PDF/pwhce/ethical-human-rights.pdf