Last weekend, I visited New Jersey for the wedding of my wife's high school and college friend. We stayed with my mother-in-law and father-in-law. Just before leaving for the airport to return home from New Jersey, my mother-in-law gave my wife and me her copy of People & Families Magazine. The magazine is a publication of the New Jersey Council on Developmental Disabilities. I have never read the magazine, and I don't keep up with what is happening in the disability field in New Jersey. I find it difficult enough to keep up with disability issues in Illinois. With that in mind, I don't know the politics of the New Jersey Council on Developmental Disabilities. In the middle of the plane ride back to Chicago, my wife, who had been reading the magazine, turned to me, gave me a concerned look, and motioned toward a specific page in the magazine.
The article was an Op-Ed by Norman Reim titled "The Debate Over Genetic Screening and Prenatal DNA Analysis." The article examines recent evolutions within genetic technology and what that means for people with disabilities. Discussing genetic engineering and DNA Analysis, the writer makes some broad points that are generally positive and that support informed choice (taking in a wealth of diverse information before making a decision regarding giving birth to a child with a disability) and disability inclusion. For example, he writes, "We as a society need to be very cautious in opening up a vast area of governmental and even public opinion intrusion into the decisions a woman and her family make about having children....professionals, officials, and others with authority have had a poor record in predicting the quality of someone's life with a significant disability. (People & Families, p. 15, Spring 2013)" I interpret this statement to say that rather than opening up choices and information, genetic screening and prenatal analysis actually limit choices. This is because if a woman tests positive for a child with a disability, than there is an assumption that the child will be aborted. According to an article from the USA Today, "Between 60% to 90% of women who receive a prenatal Down syndrome
diagnosis end the pregnancy, according to a 2012 analysis of 24 studies
in Prenatal Diagnosis." Because the information available about disability is skewed toward the negative, when a diagnosis of disability is made, "You feel like the rug is pulled out from under you. You feel very heavy. You feel very, very alone. (With Down Syndrome Diagnosis Comes a Wrenching Choice, USA Today, May 1, 2013)."
Reim trips up later in the article, when writing about Preimplantation Genetic Diagnosis (PGD). That's the section my wife was reading when she turned to me on the plane. Through PGD, a woman may select an embryo to be implanted into her uterus. In theory, the process could be used to weed out embryos that carry disability, and could be used to intentionally implant embryos that carry disability. Several years ago, PGD caught the attention of Little People of America when a New York Times article reported that some PGD providers had "denied requests to use the process for selecting deafness and dwarfism, (Wanting Babies Like Themselves, Some Parents Choose Genetic Defects, New York Times, December 5, 2006)." In the article, a doctor who denied requests was quoted to say, "In general, one of the prime dictates of parenting is to make a better
world for our children . . . Dwarfism and deafness
are not the norm, (Wanting Babies Like Themselves, Some Parents Choose Genetic Defects, New York Times, December 5, 2006)." While dwarfism is obviously not the norm, it is inaccurate and irresponsible to suggest that a child without dwarfism is in a better world than a child with dwarfism. In addition, refusing to implant an embryo with dwarfism has consequences that go beyond one embryo that is or is not implanted. The consequences negatively impact how society views and treats all people with dwarfism.
Around 2007, LPA adopted a position paper on PGD that endorsed choice. Basically, the paper said that if the process of PGD is going to be made available, then people with dwarfism and others should have the freedom to choose how to use that process. That means, using the process, a person could select either an embryo that carries disability or one that does not. If the Op-Ed in People & Families is any indication, Reim would disagree with the LPA Position Statement. Talking about a couple who used PGD to implant a child who would be Deaf, and about a woman who used the process to give birth to a child with dwarfism, Reim writes "Cases such as these reflect arrogance and selfishness." He then compares the choice to implant an embryo that carries disability with purposely disabling a child after he or she is born. Reim's position on PGD is disappointing and his comparison to disabling a child after birth is inaccurate. His comparison is inaccurate because technology exists that allows someone to make a decision about an embryo, but no disabling after birth technology exists. In fact, it could be argued that the opposite is true. In the world of dwarfism, technology is developing that may eliminate the disabling impairments that are associated with dwarfism. If and when that technology developments further, a parent will have a choice as to whether or not to pursue the treatment. The same principal of choice must be applied to PGD. The parent, not the scientist or doctor, must decide what embryo to implant.
We all have different opinions regarding quality of life. Some of us, even some of us with disabilities, would not choose to give birth to a child with a disability. Some of us would. But we need to fight for the freedom to choose. Unfortunately, if we don't fight hard and advocate for the disability and dwarfism community, assumptions about the quality of life of people with disabilities will lead to the regulation of the use of genetic and medical technology. That will take decisions out of the hands of parents.