World Down Syndrome Day is less than a month away and the Jerome Lejeune Foundation (Paris, USA, Spain) has joined with DownPride (Canada and the Netherlands) to form an international coalition of Down syndrome advocacy organizations to draw attention to the spread of cell-free DNA, or so-called non-invasive prenatal screening (NIPS), throughout Europe and the rest of the world. This human rights campaign and petition drive is being called "Stop Discriminating Down".
NIPS has been commercially available in the U.S. since Ocober 2011, but it hasn't yet been approved by most European ministries of health. Advocates in the U.S. and abroad are concerned about what impact increasingly advanced forms of prenatal screening will have on the Down syndrome community. Our campaign, "Stop Discrminating Down", focuses attention on the threat of NIPS to the fundamental human rights of those with Down syndrome, and most especially their right to life (See Article 10 of the UN Convention on the Rights of Persons with Disabilities).
The topic of prenatal screening can be a polarizing one, because it cannot be disassociated from the topic of abortion. In fact, it cannot be denied that genetic prenatal screening tests, namely cell-free DNA tests, or so-called non-invasive screening tests are unique among medical diagnostic tests in that they are tests that have been developed to provide information that has no therapeutic end. At best, these tests allow families time to prepare for the birth of their child, or to consider placing their child for adoption after birth. The majority of families, though, make another choice.
Amniocentesis was first used to prenatally diagnose Down syndrome in 1968, just about the same time higher courts and legislative bodies in both Europe and the U.S. began to address laws that decriminalized and broadened access to abortion. In fact, children conceived with disabilities became the first consequence of the legalization of abortion and it has been reported that the population of those living with Down syndrome in the U.S. has been reduced by about 30% since the Roe vs Wade decision in 1973 (de Graaf, Buckley, Skotko, 2015).
It is ironic that also in 1968 President Johnson signed the Fair Housing Act that provided legal protections to minority groups in housing, just one in a series of actions attempting to more fully integrate minority groups into U.S. society. Civil rights legilslation would eventually include persons with disabilities through the landmark Americans with Disabilities Act in 1990.
48 years after the first diagnosis of Down syndrome by amniocentesis, prenatal diagnosis has become even more widespread and sophisticated. Consequently, we have seen the abortion rate following prenatal diagnosis increase to around 67% in the U.S. and to over 92% in most of northern Europe. In cultures that value inclusion and acceptance, these tests seem contradictory to the desired ethics of modern and welcoming societies. They are, instead, increasinly ubiquitous tools that are being used to discriminate against a community of people based only upon a variation in their genome. In some cultures, it is feared, they may even be used to discriminate based upon sex.
The now deceased disabilities rights activist, Adrienne Asch, stated that “prenatal diagnosis is not a medical procedure to promote the health of the fetus. It is a procedure to give prospective parents information to decide whether or not to eliminate a possible future life.” By the way, Adrienne Asch provides good evidence that this is not a prolife/prochoice issue. She was not a prolife advocate, and she supported a woman’s right to abort in other circumstances. She did, however, oppose disability selective abortion because, as she said, a prenatal diagnosis can provide nothing more than a “first impression” of who a child will become. It is an incomplete picture, and not one that a parent should use to make such a grave decision as to deny their child - and themselves - the gift of life.
So, a positive prenatal diagnosis of Down syndrome or another genetic anomally can only have 3 potential ends: 1.) allow the parent to terminate the pregnancy, or 2.) prepare the parents and physicians for the birth of a child with a disability, or 3.) allow the parent to consider placing their child for adoption after birth. Imagine if we replaced "Down syndrome" with "sex" in this context. Would we respond to these three potential ends differently? Resoundingly, I expect, the response to the first possibility would be unfavorable. The rejection of a baby because she is a female (the usual case) is universally seen as discriminatory in spite of the practice of sex-selective abortion in some cultures.
Dr. Jerome Lejeune called targeting babies conceived with a genetic anomaly for abortion through prenatal diagnosis “chromosomal racism” and the Americans with Disabilities Act whose 50th anniversary we celebrated in 2015, called for equality of opportunity for those with disabilities. So...
This last question gets into a difficult legal matter that is now being debated in some states. The majority do abort after a positive prenatal diagnosis, but some question whether or not the U.S. Supreme Court's abortion decisions apply to selective abortion, or to abortion in general like when contraception fails. Consdering selective abortion is an act of discrimination, it is reasonable to ask if was included in the courts intent, but that is a question for legal scholars to ponder in the midst of a culture that believes there should not be any reasonable restriction on abortion. Aside from legal hair-splitting, though, reasonable people would have to see that there is an clear contradition between laws that extend protections to people with disabilities, and the use of prenatal diagnosis as a tool to selectively discriminate against individuals with disabilities.
If societies can suffer from cognitive dissonance, then clearly this is a serious case. If they can, then our campaign, "Stop Discriminating Down" is an attempt to help society heal through its resolution of its contradictory desires. We cannot both value the contributions of persons with disabilities and enshrine their rights in law, and at the same time will their demise through an expansion of prenatal screening technologies that most often lead to selective abortion.
Please take a moment to sign our petition, and then share it with your contacts around the world. Let's bring our voices together in defense of those with disabilities as we prepare to celebrate genetic diversity on World Down Syndrome Day.