My daughter’s paradoxical genes

My daughter Juliet was born with two genetic conditions that have been historically discriminated against. Recent comments about her genetic conditions expose a moral paradox in current medical standards of care.
One of Juliet’s genetic conditions is that she has a third copy of the 21st chromosome in every one of her cells. In the late 1950s, a French physician, Jerome Lejeune, identified this extra chromosome as the genetic cause of Down syndrome. In most Western countries, it has been standard of care for the past several years to offer prenatal testing for Down syndrome to all expectant mothers. Should the test be positive, medical guidelines require that the physician counsel his or her patient on abortion.
Ethicists consider this mandatory in order to respect a woman’s autonomy. The argument is that the mother must have the opportunity to receive a prenatal diagnosis in order to respect her right to choose to abort. Furthermore, policymakers support prenatal testing for Down syndrome by claiming savings to public welfare programs for each Down syndrome pregnancy that is terminated. Their rationale is that the abortion avoided a life that most likely would have accessed public supports.
It is a paradox, then, that ethicists, physicians, and policymakers have taken the exact opposite position for my daughter’s other genetic condition.
In addition to a triplicate 21st Chromosome, Juliet also has a duplicate X-chromosome in each of her cells. This double-X condition is commonly diagnosed as “female.”
Since the advent of ultrasound, sex also can be diagnosed prenatally. However, the Ethics Committee for the American Congress of Obstetrician and Gynecologists (ACOG) issued an opinion in 2007 that said it was unethical to use prenatal testing for sex selection. This was the same year that ACOG also recommended that all women be offered prenatal testing for Down syndrome. For double-X, prenatal testing is unethical if its purpose is to abort based on the sex of the baby; for Trisomy 21, it is ethically required to offer prenatal testing in order to allow for aborting the baby based on its genetic condition.
There is an inconsistency in the reasoning supporting testing for Down syndrome but not for sex. Somehow it is not disrespecting a woman’s right to choose by denying her the information of what sex her child is. Yet it has not been demonstrated why the reasons given to support banning prenatal testing for sex selection should not also apply for banning prenatal testing for selecting against Down syndrome.
ACOG’s Ethics Committee recognized that testing for sex selection reinforces societal sexist attitudes and discrimination against women. Earlier this month, this same concern was voiced on the international stage. The United Nations Population Fund hosted an international forum to address the sex imbalance occurring in Asian countries due to sex selective abortions against girls. Nobuko Horibe, the Director of the UN’s Asia and Pacific Regional Office declared at the opening, “We must join forces to ensure that sex selection is understood as discrimination against women and girls and should end.” Horibe further justified a “zero tolerance” approach to prenatal testing for sex selection based on societal consequences. Due to what has been called the “gendercide” against girls in Asian countries, there is a “marriage squeeze.” With more men and fewer women, Horibe expressed concerns about the “risks of potential social unrest, increased sexual violence against women, and trafficking.”
This consequentialist objection to prenatal testing for sex selection and the expressivist justification for its prohibition, however, has not been applied to prenatal testing for Down syndrome. Commentators, parents, and advocates, however, have objected to prenatal testing to select against Down syndrome because it, too, expresses discrimination against those with the condition. Further, the proponents of prenatal testing for selecting against Down syndrome fail to consider the societal consequences of reducing the number of individuals with Down syndrome. To the contrary, in France, where 96 percent of fetuses with Down syndrome are aborted, a Parisian Deputy in Parliament wondered last month: “The real question I ask myself is why is there still 4 percent?”
Some may object that it is an unfair comparison, equating the genetic conditions of female and Down syndrome. Clearly, decent people intuit, reducing the natural balance of women in society has a negative, sexist impact. Conversely, decent people may also intuit that Down syndrome is associated with intellectual disability, which should be avoided and reduced when possible. Recent research, however, informs what we are losing and whether Down syndrome is something to be avoided.
Studies have found that if you know someone with Down syndrome, you typically have a more positive view of the condition. Down syndrome “suffers” from the stereotype of individuals with the condition being generally loving, sweet, and compassionate. Further, recent research of thousands of parents, and hundreds of siblings and individuals with Down syndrome reported what it was like having a family member with the condition. Overwhelmingly, parents and siblings reported loving their family member with Down syndrome and individuals with Down syndrome said they enjoyed their lives. Most significant, in considering what the world is missing by reducing Down syndrome, is the fact that more than three-quarters of parents had a more positive outlook on life and almost 90 percent of siblings said they considered themselves better people because of their family member with Down syndrome.
It is taken as a given in this multi-cultural, diversity-sensitive, on-line connected society that we live in an interconnected and inter-dependent world. The justification for protecting endangered species is not only out of respect for the species itself, but also out of a concern that their elimination would be detrimental to biodiversity and ecological health. But, why are we not also concerned about the societal impact of reducing the natural number of individuals with Down syndrome? Why is selective abortion not also considered discriminatory against those with Down syndrome and their families? Further, why is it not cause for concern that by depleting the number of fellow citizens roundly considered more compassionate, society may become coarser—and, coarser still because there will be fewer individuals who would consider themselves better people because they were deprived of a brother or sister with Down syndrome?
These concerns will be drawn into even greater focus in light of the news made recently by Sequenom, a testing company. On October 17, 2011, it announced the release of a more accurate prenatal test for Down syndrome that can be performed earlier than ever before in a pregnancy. If current practice continues, the new test will result in more prenatal diagnoses of Down syndrome and, in turn, more selective abortions. What will it take to view the high percentage of abortions to be the “gendercide” -- equivalent against Down syndrome such that there is another UN official calling for zero tolerance to the unethical practice of selectively aborting Down syndrome pregnancies? So long as the paradox of my daughter’s genes remains, these questions will persist, and the world will be deprived of the natural number of individuals with Down syndrome. Mark W. Leach is an attorney from Louisville, Kentucky and a 2012 Master of Arts in Bioethics candidate. 


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