The experiments on sequencing human genome were initiated with the aim that understanding the sequence will illuminate new ways of treating disease and disability. However, such tests have yielded little success in correcting impairments in a fetus. Instead, the studies have led to discovery of methods that can be used to identify whether an unborn child has abnormalities associated with disability or disease. With the increase in popularity of prenatal tests, there have been increased diverse opinions and perceptions among the stakeholders. On the one hand, the medical community asserts that prenatal tests are a useful way through which parents can give birth to healthy babies. On the other hand, people with disability dismiss such perspectives arguing that selective abortion that follows prenatal testing is morally wrong. However, analyzing the issue from the perspective of people with disabilities, prenatal testing and selective abortion is morally wrong.
Prenatal testing and selective abortion is morally wrong because it demonstrates or passes discriminatory and negative messages not only about the disabling trait but also about the mother carrying the unborn child. This argument has been widely referred to as expressive argument. Its central message is that for tests to discriminate against disabling traits demonstrate negative and hurting attitudes about people who live with those similar traits. To exacerbate this, people with disabilities who experience discrimination daily in their lives because of having one different trait view that prenatal testing repeats and underscores the same behavior by letting that trait dominate the whole discussion1. In other words, a single trait is used as a representation of a whole person. Gaining an understanding of a single characteristic is used as a justification to abort an otherwise wanted fetus. Based on this, prenatal testing sends a hurtful message that human beings are reducible to one trait which is considered undesirable.
The problematic nature of prenatal testing is demonstrated in everyday life whereby people are overlooked because of having an undesirable trait. Feminists and rights groups with similar interests have also cited prenatal testing as problem arguing that it supports discriminatory attitudes towards females. In other words, the sex of the fetus is used to obliterate the whole. For instance, some parents have been noted saying that they do not want to give birth to a child after discovering it is a girl2. In addition, by supporting the development of testing methods on some characteristics while ignoring others, the medical community is spreading the message that some features require the attention of prospective parents.
The arguments for people with disabilities against prenatal testing and assisted suicide have been criticized by various professionals especially those that support abortion. While it is acceptable that a woman has the right to decide whether she does not want to give birth to a child at a given time due to certain circumstances, it is unclear whether it is morally right to abort a wanted pregnancy after the discovery that the child has defects. However, many argue that the distinction is unclear. For instance, a woman who has three children decides to abort a fetus because she does not want a fourth child might be suggesting the worthiness of families with four children or the irrelevance of the fourth born. The same applies for prenatal testing where one trait represents an individual and justifies abortion. In addition, pro-prenatal testing have questioned why not wanting a fourth child could be a legitimate reason for abortion and not disabling traits.
People with disabilities who call for an end to prenatal testing have attracted criticism for presuming that selective abortion is morally wrong and other methods of preventing disability are right. For instance, these groups support the prescription of folic acid as a way of preventing spina bifida. Similar methods are aimed at protecting the health of the mother as well as the unborn child. However, disability critics argue that assisted death through abortion does not protect the unborn from anything but rather kills the fetus. On the other hand, the mainstream population perceive selective abortion differently. To them, there is no difference between selective abortion and using other ways to prevent disability3. They argue that there exists no difference between fetus with disability and a born child with disability. In fact, they suggest that all parents have the responsibility of loving and caring for their children regardless whether they are disabled or not. Their justification is based on the premise that a pregnant woman is not yet a parent until the child is born. Therefore, in the same way a couple may decide that it is not in their best interests to give birth to a child, so does a couple that decides not to give birth to a child that has disability features.
One of the most popular arguments used by people with disabilities against prenatal testing is the parental attitude argument4. According to this argument, carrying out prenatal testing to select or dismiss an unborn child demonstrates problematic attitude toward parenthood. The argument asserts that prenatal testing stems from fallacy and fantasy that parents can assure or create perfection for their young ones. The supporters of this argument point out that if only parents understood what they should seek for in parenting, then they would understand how traits of a child are irrelevant.
The parental attitude argument also points out that prospective parents who refuse to give birth to children with disabilities ignore the fact that disabling traits come along with other strong traits that are source of pride, enjoyment, and as problematic and annoying as other childrens traits. Therefore, parents who think that a disability trait precludes every other trait that could be strong, then their actions are based on stereotype and misinformation5. If prospective parents were to realize that prenatal testing is a fallacy and fantasy, then they could understand that good parenting is based on raising a child regardless of his/her traits and the nature of the relationship they develop.
Disabled people argue that assisted death and prenatal testing are based on misinformation about what life of a disabled person and that of their families entails or what it is like6. The central theme of this argument is the question whether disability is a form of neutral human variation or if it is different from differences usually perceived as nondisabling features like the skin color, eye color, and hair color. Most of the beliefs on the need for assisted death are not informed by empirical data but rather assumptions that disabled peoples lives are characterized by agony and frustrations. In fact, these assumptions are used to justify that many marriages break up due to having a disabled child. To make matters worse, the medical fraternity perceive childhood disability as a negative aspect for both the child and their families7. However, this is contrary to studies on the life satisfaction of disabled people and their families. The studies reveal that families with disabled children do not fair better or worse than those with normal children8. In addition, recent evidence suggests that families with a disabled child lead happier lives than what the society perceives or expects9.
Allen E. Buchanan, Choosing Who Will Be Disabled: Genetic Invervention and the Morality of Inclusion, Social Philosophy and Policy 13 (1996): 18-46.
Dorothy C. Wertz and John C. Fletcher, Sex Selection through Prenatal Diagnosis: A Feminist Critique, in Feminist Perspectives in Medical Ethics, ed. Helen Bequaert
Holms and Laura M. Purdy (Bloomington, Ind.: Indiana University Press, 1992), pp. 240-53.
Nelson, Meaning of the Act.
Asch, Reproductive Technology and Disability, p. 88.
Murray, Worth of a Child, pp. 115-41; and Adrienne Asch and Gail Geller, Feminism, Bioethics, and Genetics, in Feminism and Bioethics: Beyond Reproduction, ed. Susan M. Wolf (New York: Oxford University Press, 1996).
J. A. Blier Blaymore, J. A. Liebling, Y. Morales, M. Carlucci, Parents and Pediatricians Views of Individuals with Meningomyelocile, Clinical Pediatrics 35, no. 3 (1996): 113-17; M. L. Wollraich, G. N. Siperstein, P. OKeefe, Pediatricians Perceptions of Mentally Retarded Individuals, Pediatrics 80, no. 5 (1987): 643-49.
Philip Ferguson, Alan Gartner, Dorothy Lipsky, The Experience of Disability in Families: A Synthesis of Research and Parent Narratives, in Parens and Asch, Prenatal Genetic Testing.
M. W. Krauss, Child-Related and Parenting Stress: Similarities and Differences Between Mothers and Fathers of Children with Disabilities, American Journal of Mental Retardation 97 (1993): 393-404.
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