ABSTRACT: Many women are unprepared to make prenatal decisions about fetuses diagnosed with Down Syndrome because of societal pressures to have "normal" children, a negative view of persons with disabilities by many in society, a fear of legal liability by those in the medical community, the lack of genuine informed consent before undergoing genetic testing and abortion, and the failure of non-directive pre-abortion counseling in the medical community. Moreover, medical professionals fail to communicate correct and unbiased information before and during the genetic screening, diagnostic testing, and abortion decision-making process. This article addresses the contributing factors and causes that ultimately lead to a lack of informed consent and a very high abortion rate for fetuses diagnosed with Down Syndrome.
There are numerous contributing factors to what some may call a high termination rate of fetuses that have tested positive for Down Syndrome. One major factor is the direct and indirect influences of medical professionals, which include genetic counselors, family physicians and obstetricians and gynecologists. In this article, I support the ethical principle of nondirective counseling and the genetic counselors who seek to achieve nondirectiveness. However, I suggest genetic counselors and many medical professionals have a deference to the use of medical technology and the belief that patients desire the maximum amount of information. This ingrained deference hinders most medical professionals from being neutral and often causes a subtle promotion of prenatal testing and abortion. Overall, increased prenatal testing contributes to the high abortion rate of fetuses diagnosed with Down Syndrome, a lack of genuine informed consent, greater intolerance of people and especially children with disabilities, and less money for research and development of effective treatments. To the extent that women are encouraged to terminate their pregnancies, prenatal testing and abortion of affected fetuses cannot be considered morally justified because the decision lacks genuine informed consent.
Similarly, other medical professionals, such as family physicians, obstetricians and gynecologists, contribute to the problem. Initially, almost all women seek prenatal treatment from a family physician or obstetrician and gynecologist. However, these medical professionals tend to spend significantly less time with patients compared to genetic counselors, which can result in miscommunications. Moreover, these professionals may encourage prenatal testing and the use of "up front" consent forms to reduce legal liability. In addition, these medical professionals typically receive inadequate genetic training, which can result in the misinformation, and most discouraging, undue influence, bias or prejudice against persons with disabilities, which circumvent informed consent. Time constraints, fear of liability, little genetic training and the practice of directiveness can easily result in a negative tone that manifests itself in phrase such as, "I'm sorry," or "Unfortunately, I have some bad news to share" and conversations void of the positive reality that many individuals with Down Syndrome can become semi-independent and with good medical care can live into adulthood. Lastly, both medical professionals and patients and their families may overly rely on genetic technologies, which are far from perfect. The assumption that these technologies are 100% accurate can lead to many injudicious and erroneous choices depending upon the degree of inaccuracy. Yet, medical information is only part of what women and their families use to make their decisions. Their decisions are likely more substantially swayed by societal influences and pressures.
It is important to realize that genetic counselors and other healthcare professionals bring their own values into the prenatal testing process, with patients also adding different and competing values and background knowledge to the process. …