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Follow the money
Is the elimination of children with Down syndrome the first sign of a new eugenics?
By the year 2030, Denmark will become Down syndrome-free. If this happens, the landmark elimination of this minority group will be due to the introduction of a national prenatal testing program in 2004. The number of DS births halved in 2005 and has dropped by 13 percent every year since then. Niels Uldbjerg, professor of gynaecology and obstetrics at the University of Aarhus, told the Copenhagen Post that this is a “tremendously great accomplishment”.
But is it? Or is it a form of latter-day eugenics?
Although the United States is far bigger and more diverse than Denmark, the development of non-invasive prenatal diagnosis (NIPD) could make Down syndrome births a rarity there as well. Normally, they account for about 1 birth in 691. But when statistics show that when pregnant women are diagnosed with a DS child, as many as 90 percent terminate it.
Up until now, diagnostic techniques have been invasive and carried a risk of miscarrying the child. A good number of women refuse the testing and some give birth to DS children. But with non-invasive screening, the risk disappears. More women will have the test and nearly all DS children will be aborted.
Some consider this eugenics.(1) Eugenics – selecting people based on genetics out of a belief that it improves the human race – has been taboo since the compulsory sterilization laws in Germany under the Nazis. These evolved into the euthanasia of the disabled and were a precursor to the Holocaust. While no one is predicting government-mandated breeding policies, many people are worried that NIPD is ushering in an era of privatized eugenics.
Children with Down syndrome are the first to be affected. In recent years, abortions of DS pregnancies have outnumbered live births worldwide.(2) In France and Switzerland, over 85 percent of all DS pregnancies are terminated.(3) A recent United States study found that the gap between expected versus actual live DS births is widening due to DS pregnancies being terminated.(4) Given this impact, it is no wonder that prenatal testing is regarded by some as Eugenics 2.0.
A gross exaggeration, respond proponents of prenatal testing for DS. It’s not compulsory! Expectant mothers are free to choose whether to accept screening or diagnostic testing and to decide whether to continue or terminate following a diagnosis.(5)
The reality, though, is different. Many women are too scared to say No to testing and then to an abortion. Doctors admit to being poorly trained in counseling their patients and to even urging them to terminate.(6) There are too few genetic counselors for current prenatal testing programs. When NIPD arrives many more will be needed. Older diagnostic systems are invasive and women risk miscarrying. So “risk-free” diagnosis will be far more popular.
There are other problems. Doctors do not provide educational materials to their patients, nor do they discuss the third option of adoption following a diagnosis.(7) It’s not surprising, then, that mothers say that prenatal testing makes them anxious, regardless of the test results. A significant number believe that their decision was inconsistent with their values.(8) Sure, there’s no compulsion. But there is heavy-handed social pressure.
Commercial interests also stand to benefit from the introduction of NIPD. In the US, the National Institutes for Health (NIH) funded the confirmation of nuchal translucency as a first-trimester screening test for Down syndrome with millions of public dollars.(9) Just this year the NIH granted a private laboratory US$2 million for its efforts at developing NIPD, in addition to private funding.(10) In Europe, a multi-national consortium is supporting the Orwellian-named SAFE project: Special Non-Invasive Advances in Fetal and Neonatal Evaluation.(11)
In[m1] many countries, prenatal testing for DS is funded by taxpayers. Governments justify funding prenatal testing based on a claimed benefit that fewer children with Down syndrome mean more healthcare dollars for other people. Not surprisingly, because the patient does not have to pay the cost, there are more tests and more terminations.(12)
Supporters of public funding argue that it is cheaper to offer subsidized prenatal testing and abortions than to pay the medical bills of a child with Down syndrome.(13) Governments, therefore, are involved in a program intended to reduce the number of lives with DS. The new eugenics looks a lot like the old eugenics.
This eugenic inspiration becomes even more evident when considering what governmental programs do not fund. In the United States physicians are not required to have regular training on ethical, non-directive counseling and disability awareness. Testing laboratories are not required to also provide balancing information about DS to go along with the offering of their testing. In the US genetic counseling sessions are not covered by medical insurance and there is no public funding for parent support organizations, a helpful resource recognized by both patients and professional guidelines. Furthermore, governments fail to run public awareness campaigns on the value and dignity of a life with DS. They fail to combat stigmatization of people with Down syndrome.
What a contrast with reactions to the scandalous treatment of girls in Asia! It is estimated that 100 million girls are missing as a result of sex-selective abortion. It may be a mother’s choice, but Americans are not buying that argument. They are calling it gendercide. Meanwhile the Government funds prenatal testing that targets children with Down syndrome with an equally brutal result.
Following the money, and what it funds and what it does not, reveals that the current administration of prenatal testing for DS appears much more like the old eugenics that the civilized world pledged would happen “never again.” As a woman with a child with Down syndrome told a Danish newspaper, “We should not have an ethnic cleansing type of situation, which this resembles. They are going after one specific handicap. What’s next? Will it be children with diabetes who will be rejected?”
Mark W. Leach is an attorney from Louisville, Kentucky pursuing a Master of Arts in Bioethics.
(1) See e.g. McCabe LL, McCabe ER. Down syndrome: coercion and eugenics. Genet Med 2011 May 6; Stein JT. Backdoor eugenics: the troubling implications of certain damages awards in wrongful birth and wrongful life claims. 40 Seton Hall L. Rev. 1117 (2010); Dixon DP. Informed consent or institutionalized eugenics? How the medical profession encourages abortion of fetuses with Down syndrome. Issues Law Med 2008;24:3-59.
(2) Cocchi G et al. International trends of Down syndrome 1993-2004: births in relation to maternal age and terminations of pregnancies. Birth Defects Research (Part A) 2010;88:474-479.
(3) Boyd PA, et al. Survey of prenatal screening policies in Europe for structural malformations and chromosome anomalies, and their impact on detection and termination rates for neural tube defects and Down’s syndrome. BJOG 2008;115:689-696.
(4) Egan JF, et al. Demographic differences in Down syndrome livebirths in the US from 1989 to 2006. Prenat Diagn 2011; 31(4):389-94.
(5) Chervenak FA, McCullough LB. Ethical considerations in first-trimester Down syndrome risk assessment. Curr Opin Obstet Gynecol 2010;22:135-8.
(6) Cleary-Goldman J, Morgan MA, Malone FD, Robinson JN, D’Alton ME, Schulkin J.Screening for Down syndrome: practice patterns and knowledge of obstetricians and gynecologists. Obstet Gynecol 2006;107:11-17; Wertz DC, Drawing lines: notes for policymakers, in Prenatal Testing and Disability Rights (Parens E, Asch A ed., 2000).
(7) Driscoll DA, Morgan MA, Schulkin J., supra; Lindh HL, Steele R, Page-Steiner J, Donnenfeld AE. Characteristics and perspectives of families waiting to adopt a child with Down syndrome. Genet Med 2007;9(4):235-40.
(8) See e.g. Lalor, J Fetal anomaly screening: what do women want to know? J Adv Nurs 2006;55:11-19; Seavilleklein V. Challenging the rhetoric of choice in prenatal screening. Bioethics 2009;23:68-77.
(9) Malone FD et al. First-trimester or second-trimester screening, or both, for Down’s syndrome, New Eng J Med 2005;353:2001.
(10) Gene Security Network receives $2M grant from NIH to fund clinical trials to apply parental support for non-invasive prenatal diagnosis. available at http://www.businesswire.com/news/home/20110427007058/en/Gene-Security-Network-Receives-2M-Grant-NIH.
(11) Maddocks DG et al. The SAFE project: towards non-invasive prenatal diagnosis. Biochem Soc Trans 2009;37:460-5.
(12) See Boyd PA, et al., supra.
(13) See Andrews LB. A conceptual framework for genetic policy: comparing the medical, public health, and fundamental rights models. Wash U L Q 2001;79:221; (citing Sally Lehrman, Prenatal Genetic Testing: The Topic In-Depth, DNA Files (Nov. 1998), at http://www.dnafiles.org/about/pgm3/topic.html. (last visited Sept. 18, 2003). California's Genetic Disease Branch frankly reported in a government-sponsored study recounting the societal benefits resulting from genetic testing, “it saved a total of $108 million in 1993 by preventing 265 cases of Down Syndrome through prenatal testing and the abortion of affected fetuses.”); Morris JK, Alberman E. Trends in Down’s syndrome live births and antenatal diagnoses in England and Wales from 1989-2008: analysis of data from the National Down Syndrome Cytogenetic Register. BMJ 2009;339:b3794; Ball RH et al., First- and Second-Trimester Evaluation of Risk for Down Syndrome, Obstet Gynecol 2007:110(1):10-17; Gekas J, et al. Cost-effectiveness and accuracy of prenatal Down syndrome screening strategies: should the combined test continue to be widely used? Am J Obstet Gynecol 2011;204:175.e1-8.
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