Anya, a 36-year-old woman and her 41-year-old husband, Dev, came to the Woman’s Center to discuss issues about “advanced maternal age.” This would be their first child. Women 35 years and older are considered to be “advanced maternal age” and have an increased risk for having children with chromosome abnormalities. These women are offered prenatal testing (chorionic villus sampling performed between 10 and 12 weeks gestation or amniocentesis performed at approximately 16 weeks gestation) to determine if the fetus has a chromosome abnormality such as Down syndrome. The testing is optional; the counseling before the desired test is not.
As Marge, the genetic counselor, began the session, she noted some tension between Anya and Dev. They stated they were here because they wanted to have a chorionic-villus-sampling (CVS) to determine if the fetus had any chromosome abnormalities. At 36 years old, Anya has a 1/149 chance (less than 1%) to have a child with a chromosome abnormality. The risk to have a miscarriage due to the procedure is approximately the same — about 1/150. The risk of a miscarriage due to an amniocentesis is approximately 1/270. As the discussion continued, Dev took charge. He wanted to know if the sex of the baby could be ascertained with accuracy. Marge said that it could, and asked if there were any know sex-linked disorders, such as hemophilia, in the couple’s family history. Dev said that there was not.
Marge continued with the counseling, emphasizing that gender testing is a personal decision and depends on individual experiences, what couples think they would do with the information, and how much risk they want to take to obtain that information. Anya asked, “How many people have CVS just to see if the baby is a boy or girl?”
Marge was surprised by the question and answered her by saying that a sonogram performed at about 18 weeks usually could give the couple this information with almost no risk to mother or child. She also asked Anya why she asked the question. Dev stated emphatically that their reasons were none of Marge’s business. He repeated what Marge had said earlier: “It is a personal decision!” Anya said that Dev wanted a boy. If the baby was a girl she would have to terminate the pregnancy. At this point, Dev interrupted and said, “This time it is my turn. I want a son! I cannot understand why you are reluctant now, when it was important to me — and to my family, and for that matter, to your family. You had two previous terminations for yourself, for your education and your convenience.” he said. “This time I want a baby before it is too late for us — and I want a son.” He said they wanted the CVS because the procedure is performed earlier in the pregnancy, which would, in turn, would enable Anya to terminate the pregnancy at an early gestational age (before 15 weeks gestation). Anya’s OB — in fact all the OBs in the local area hospital — will not terminate a healthy pregnancy. The only organization in town that terminates unwanted pregnancies perform a termination up until 15 weeks gestation.
Marge continued the discussion with Anya and Dev for the next two hours. At the end of the discussion, there was no change in the situation. She (Marge) felt appalled and conflicted. Dev and Anya were not concerned about chromosomal abnormalities. Dev even said, “We don’t need your counseling. Just sign off on this so we can schedule the test!”
There are few things in society more controversial than sex-selection and abortion — and the use of abortion as a tool for sex-selection. Add to this “paternalism” in genetic counseling and overlay it with the wife’s reluctance and the husband’s insistence — and throw in cultural customs and beliefs, and Marge faces the proverbial Gordian Knot. To add fuel to the fire, in January 2012 Canadian Medical Journal published an editorial by Editor-in-chief of the Rajendra Kale saying that parents should not be told the sex of their child until the fetus is at least 30 weeks gestation. Why does he advocate withholding information? “A pregnant woman being told the sex of the fetus at ultrasonography at a time when an unquestioned abortion is possible is the starting point of sex selection,” Kale wrote in the editorial published online Jan. 16. Two large organizations — the Society of Obstetricians and Gynaecologists of Canada, and the American Congress of Obstetricians and Gynecologists (ACOG) — agree that sex selection is unethical. Still, withholding information about the sex of a fetus also is not ethical, according to ACOG. Nonetheless, Kale argued that a woman has a right to information about herself as it relates to her health and medical care; the sex of the fetus is medically irrelevant information. The only exception should be in cases of rare, sex-linked illnesses.
Why should abortion be discouraged when women seek it for the purposes of gender selection, but not discouraged when sought for other reasons? If the fetus is truly a non-entity that lives or dies depending on the mother’s decisions about what happens to her body, then I am not sure why abortion for sex selection purposes should concern anyone except the parents. The Code of Ethics of the National Society of Genetic Counselors (NSGC) says that genetic counselors should “respect their clients’ beliefs, cultural traditions, inclinations, circumstances, and feelings . . . and refer clients to other competent professionals when they are unable to support the clients.”
However, such a hands-off approach is causing deep social concern. Though concentrated in China and India, abortion for sex-selection is practiced in rich and poor countries and in Buddhist, Hindu, Christian, and Muslim societies alike. Because of males’ greater vulnerability to childhood disease, nature ensures that 105 boys are born for every 100 girls, so the sexes will be equal at marriageable age. Yet China’s sex ratio is 121 boys per 100 girls; India’s is 112. The usual rationale for this stresses traditional “son preference” in South and East Asia. Families want a son to bear the family name, to inherit property, and to carry out funerary duties. However, in her fascinating book, “Unnatural Selection: Choosing Boys Over Girls, and the Consequences of a World Full of Men,” Mara Hvistendahl has little patience with this account, which fails to explain why some of the richest, most outward-looking parts of India and China have the most skewed sex ratios.
All of which leads to the questions: Does a human fetus have any worth at all? Is a fetus the property of the woman who bears it? Does the father have any rights — and, if so, what are their limits? Do people have a right to medical information unrelated to their care? Is mandatory counseling an unwarranted intrusion on a couples’ privacy? How much individual autonomy can — or should — be exercised to the detriment of society? Is gender selection inherently biased? Perhaps a fetus is not just a “blob” of cells. Perhaps it is something more. However, I am not sure that health professions should, or even can, arbitrate such matters.
Dr. Kale’s editorial is most certainly too late. In-home pregnancy tests available online that can determine fetus gender at seven weeks from maternal blood. A report in Journal of the American Medical Association (JAMA) confirmed the accuracy of 6,000 pregnancy tests similar to the ones being sold to consumers. And women can choose (or be coerced into) an abortion without any questions. People can learn the fetus’s gender quite early and choose whether or not to have a son or daughter, for better or for worse. A few states in the U.S. already have laws prohibiting sex selection abortions; their effectiveness remains to be seen.
Whole industries are developing around conceiving a male or female offspring, including sperm and embryo sorting, for example. One such company is Gender Select in Kentucky. Another is Pink and Blue, which asks parents to sign a waiver saying they are not using the kit for sex selection abortion.
Now, back to our case study. In the face of Anya’s distress, it is difficult for Marge to recommend that this couple proceed to CVS. The easy way out for Marge (cutting this Gordian Knot with a single swing) is to recommend that Anya and Dev purchase a gender-identification kit online, discuss the results, and make their own decision. On the other hand, Anya and Dev do need counseling — marital counseling – and it is possible that Anya may indeed need an advocate. The couple needs follow-up and referral — if they will accept it.
Leah Curtin, RN, ScD(h), FAAN, is Executive Editor, Professional Outreach for American Nurse Today.
American Pregnancy Association. Amniocentesis. http://www.americanpregnancy.org/prenataltesting/amniocentesis.html. Accessed Jan. 19, 2012.
Devaney SA, Palomaki GE, Scott JA, Bianchi DW. Noninvasive fetal sex determination using cell-free fetal DNA. JAMA; 2011;307:223-320.
Hvistendahl M. Unnatural Selection: Choosing Boys Over Girls, and the Consequences of a World Full of Men. 2011.