Cheaper, more Accessible Prenatal Screening-Keeping Out that Which is Unwanted.
Three major pharmaceutical companies in the US have been vying to bring cost effective prenatal screening tests (using the new protocol of using a single maternal blood sample to prenatally determine Down syndrome and some 64 other conditions) for some time. In fact Sequenom’s test “MaterniT21” is currently available for patient access in 20 US markets. Meanwhile Aria has come out in the financial pages with an announcement of a new test that will cost far less than it’s predecessor Sequenom and it’s competitor Genzyme.” Aria is not the first company to offer such a test, but it plans to do so for a fraction of the price that Sequenom currently charges per test. “…Sequenom’s cash price for its MaterniT21 test, launched in October last year, is $1900. Song says Aria’s test will cost “hundreds of dollars,” but declined to be more specific. For the Aria test, the blood from the pregnant mother can be taken in a doctor’s office. Aria will do the testing in its lab in San Jose.”
So as the cost of deselecting Down syndrome from the human family decreases, the ongoing commodifying of the lives of citizens with disabilities and the technology used to make these lives obsolete becomes cheaper and more accessible.
But what is the real cost? Where is the greater public discourse on what it would mean to our existence is we no longer had citizens with Down syndrome, dwarfism, Trisomy 18, and 13 or cleft palate in the world? What other conditions might become less valuable and more of a target for prenatal elimination in society?
In Canada women have the legal right to make decisions about the progressions of their pregnancy. But what constitutes “informed decisions”? If the conditions of life for your unborn fetus are described to you in way a way that makes their existence seem untenable-is it little wonder that 80-90% of pregnancies with an early determination of Down syndrome (using the old prenatal technology of Triple Screen Blood Tests) end in termination?
When this writer met with the Executive Director of the Society of Obstetrics and Gynaecology in the spring she agreed that what Canada desperately needs is fair and balanced information in the prenatal setting, about not just the challenges of of a life with disabilities, the but joy and benefits inherent in it. Thank-fully organizations like the Canadian Association for Community Living are heeding the call for this type of material.
The question lingers-who will pay to produce it and can we come to some mutual understanding on what fair and balanced information is? That remains to be seen. Lettercase / Cannister Marketing company has created a wonderful plain language booklet that does the job (complete with references for support for all three options when facing a pregnancy in the US, but they have faced the same dilemma Canada will. Who will pay, the Pharmaceutical companies, the medical community or non-profit advocacy groups? It seems to this writer in order to come together, we need to start to talk. Because what I know to be true is that these tests are coming to Canada-and coming soon. Wouldn’t it be wonderful to have these resources in place before the tests are available at your local medical clinic or Dr.’s office?
Women have the right to make informed decisions…the simple existence of this test (one that could serve to eliminate Down syndrome entirely) says a lot about where the community stands on the value of a life with disabilities. There is an awful lot to do. Finding common ground in respecting the rights of many groups of vulnerable citizens is a good place to start.
If you would like more information on the current state of prenatal screening in Canada and in the US, please feel free to contact me at the co-ordinates below. Inclusive Humanity offers facilitated dialogues, roundtables, and workshop/lectures on this topic and many others.