Informed consent or institutionalized eugenics? How the medical profession encourages abortion of fetuses with down syndrome.

• Author: Dixon, Darrin P.

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.

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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. Furthermore, patients' values reflect a combination of individual perspectives and social norms. While a great deal of variation exists among patients, some trends may be observed. Some women reject prenatal testing because they know they would not have an abortion for moral, religious or personal reasons. Others reject such testing because of the risk of miscarriage. But a vast majority of women at increased risk (those for whom it is medically indicated) of chromosomal or other detectable conditions under the old guidelines choose prenatal screening and/or testing. (1) Several factors contribute to this trend. Just as medical professionals are not neutral about the value of information, neither is our society, which views the gathering of information as a sign of responsible behavior and good decisionmaking. (2) In the context of prenatal testing, patients may believe that getting information about the fetus is not only the right thing to do, but a form of reassurance and a way to get a sense of control over the potentially overwhelming experience of reproduction. (3) This trend contributes to the massive increase in prenatal testing and the need to know whether a child has a disability.

This article does not propose the elimination of prenatal testing. Rather, it proposes that the genetic testing and counseling should not be biased against the birth of children with disabilities. Genetic testing and counseling should not convey directly or indirectly the message that the lives of persons with disabilities are worth less than other lives, or that the only practical alternative is to prevent their existence through abortion.

Overall, prenatal testing should be a way for women and their families to reduce the stress and anxiety associated with the unexpected birth of babies with special needs and also a conduit through which women are given information to help them appreciate the value of children with special needs and expand their knowledge of available services and treatment options for such children. However, the practical result of prenatal testing tends to be an increased termination rate of fetuses diagnosed with Down Syndrome or other genetic anomalies.

Is Abortion the Solution to Down Syndrome?

On May 9, 2007, Amy Harmon of the New York Times wrote an article titled, "Prenatal Testing Puts Down Syndrome in Hard Focus." (4) In this article she stated that 90% of women who receive a positive diagnosis of Down Syndrome choose to have an abortion. The New York Times received thousands of emails and letters by readers, such as George E Will, who found the 90% percent statistic to be morally problematic, probably untrue, and a sign of medical procedural failure. This article will discuss the human, societal, and medical aspects of prenatal genetic testing of Down Syndrome fetuses that contribute to a high abortion rate.

Before examining the various contributing factors, it should be noted that the statistic that "90% of women who receive a positive fetal diagnosis of Down Syndrome choose to have an abortion" (5) may be too high. That number may be overestimated and the source should be questioned for several reasons. First, although no official data exists, medical professionals report that often women abort when they discover there is mental retardation or a serious anatomical birth defect, sometimes incompatible with life. (6) But some argue that the women who choose to have prenatal testing are the women most likely to be considering abortion, so the population having prenatal testing is more likely to be predisposed to have an abortion. (7) Second, some doctors do not refer patients for genetic counseling or prenatal testing if they say they would not consider abortion. (8) Third, all the numbers are suspect because there is no birth certificate when a baby is aborted and a lot of states do not track abortions (e.g., Pennsylvania) which results in a lack of good epidemiology. (9) Fourth, many cities like Pittsburgh have Down Syndrome clinics that are instrumental in helping children develop and become a part of the community. (10) Fifth, after extensive research, it appears the abortion rate varies significantly by region. (11)

Professor Elizabeth Gettig, (12) MS, CGC, stated that during the 1980's she practiced genetic counseling in North Carolina and after a positive Down Syndrome diagnosis, almost 100% of the women aborted because of a lack of economic resources. (13) In contrast, in Pittsburgh she found that about half of the women with a positive diagnosis for Down Syndrome continue the pregnancy and about half abort. (14) She gives several reasons for this disparity. First, the Pittsburgh region has a higher percentage of Catholics. Second, there are more services than most cities in Pittsburgh to assist children who have disabilities. (15) Lastly, the new federal law protects all children with disabilities so that from ages 0-3 parents of children with disabilities receive free services for the disabled child and all children at age three receive an Individual Educational Plan so that they can start developmental daycare and other services before going to school. (16) Furthermore, because the services are better, the child has a better chance of living independently and becoming an integral part of the community.

Other genetic counselors, journalists and medical professionals find different statistics. Elizabeth A. Balkite, (17) stated that in her own experience she believes the termination rate for Down Syndrome pregnancies to be roughly 60%. (18) She thinks that the other 40% keep the baby or place the baby up for adoption. (19) Ellen Wright Clayton, M.D., J.D., believes the number is closer to 50 percent. (20) In the January 29, 2007 Newsweek article titled "Golly, What Did Jon Do?," George E Will stated, "At least 85 percent of pregnancies in which Down Syndrome is diagnosed are ended by abortions." (21)

The 90% New...