My fellow SINner Russell Blackford has put up a post called “Down syndrome, disability, academic freedom” that he is getting a lot of flack about.
In it, he defended the rights of Professor D Gareth Jones of Otago University to publish an academic paper called “Testing times: do new prenatal tests signal the end of Down syndrome?” In this open-access article, Professor Jones and his co-author (a student) discuss the current state of prenatal screening for Down Syndrome (DS) in New Zealand and possible implications.
Since 2010, prenatal screening for Down syndrome (DS) has been offered to all pregnant women in New Zealand. The programme has been criticised by several groups, on claims that screening is eugenic and discriminatory towards those with DS. Recently, tests have been developed that may one day prove more efficient than current screening methods. They are an example of ‘Non-Invasive Prenatal Diagnosis’ (NIPD), which enables diagnosis earlier in pregnancy with less risk of complications. If the current programme raises objections, what threats does this new and seemingly more attractive technology pose to the DS community?
We argue that NIPD is simply an extension of current screening methods, raising similar ethical concerns. Presently, the programme shows little evidence of ‘eugenics’, demonstrated by moderate uptake rates and varying attitudes towards disability. We do not regard the offer of screening to be threatening, as women choose whether or not to be screened depending on their own personal circumstances. One day, prenatal testing may result in fewer people with DS; but past and present trends indicate these individuals will continue to be supported, irrespective of ‘group size’. Care and respect for the disabled will remain essential, regardless of a woman’s decision over her pregnancy.
In his article, Blackford specifically addresses the call by an organization called Saving Downs (SD) for Professor Jones to resign from his academic post due to what the press release says is “a highly offensive and discriminatory paper about prenatal testing for Down syndrome.” The main point of contention appears to be that Saving Downs does not see DS as a disabling condition. Their press release states:
Concepts that they are a “disadvantage” or “immensely difficult” are extreme forms of discrimination that reinforce negative stereotypes towards them. It exposes them to harmful attitudes, bigotry and prejudice.
SD spokesperson Mike Sullivan also takes offense at the use the wording “suffering from Down Syndrome,” as he declares
[S]uch attitudes are extremely hurtful and false. People with Down syndrome are not deformities and they are not sufferers. Such concepts are harmful, discriminatory, ablest and eugenic.
Such language is not unique or new in the debate over prenatal testing for DS and possible results of such (including a potentially lower number of people with DS being born).
What is striking about this press release, to me, are two things. First, SD is calling for the resignation of someone because they disagree with his view point. This is absolutely ridiculous for a number of reasons. Debate (even very heated debate) on sensitive issues is a sign of a healthy society, where people can express their views without worry of censure and recrimination. Suppressing dissenting opinions is not healthy for society and is more in line with dictatorship or fascism than democracy. If every time one person disagreed with another resulted in one of them losing his/her job, we would have no one doing research in academia or addressing controversial issues in research. The ability to be challenging of others’ viewpoints is the very crux of academic freedom. As the American Association of University Professors (AAUP) states:
Academic freedom is the indispensable quality of institutions of higher education. As the AAUP’s core policy statement argues, “institutions of higher education are conducted for the common good and not to further the interest of either the individual teacher or the institution as a whole. The common good depends upon the free search for truth and its free exposition” (1940 Statement of Principles on Academic Freedom and Tenure).
Attempting to suppress this indispensable quality is tantamount to destroying the ability of researchers to discuss and examine controversial topics. Even more frustrating about this is that Jones’ article is not even advocating for mandatory testing or compulsory termination. Instead, they merely a) showed how offering a choice to pregnant women is not “institutionalized eugenics”; b) reaffirmed the individual’s ability to make informed decisions; and c) affirmed that support for those with DS (and other disabling conditions) should be continued.
The second issue I have is with SD stating that DS is not a disabling condition. Although the definition of “disabling” is certainly up for debate and socially constructed, the sheer number of (generally seen as) negative symptoms associated with a DS diagnosis is immense:
- Birth defects involving the heart, such as an atrial septal defect or ventricular septal defect
- Dementia may be seen
- Eye problems, such as cataracts (most children with Down syndrome need glasses)
- Early and massive vomiting, which may be a sign of a gastrointestinal blockage, such as esophageal atresia and duodenal atresia
- Hearing problems, probably caused by regular ear infections
- Hip problems and risk of dislocation
- Long-term (chronic) constipation problems
- Sleep apnea (because the mouth, throat, and airway are narrowed in children with Down syndrome)
- Teeth that appear later than normal and in a location that may cause problems with chewing
- Underactive thyroid (hypothyroidism)
In addition, the vast majority of people who have DS have comorbid mental retardation (usually in the mild to moderate range), which is by itself a massively disabling condition. Subsequent to this are adaptive functioning difficulties that mean most people with DS will never be able to live independently. Research has also found higher direct costs of healthcare for those with DS, as well as large amounts of indirect costs, such as lost productivity, in various countries (Australia and China, most recently). Any statement that DS does not impair the ability of an individual to function adaptively in society is simply false.
In the interest of fairness, though, research into the positive aspects of a family having a child with DS has been growing:
- Most (70%) of families adapt and lead ordinary family lives.
- Most families report benefits of having a child with Down syndrome for the whole family.
- Marriage breakdown is no more frequent than for the rest of the population it may even be less frequent.
- Brothers and sisters do not have more problems than in other families and are likely to be more caring.
- Resilient families tend to use practical coping strategies they seek out information and services. They join parent support groups.
- Resilient families develop a supportive emotional climate and encourage open communication between family members.
- Ageing parents of adults with Down syndrome still living at home have better physical health and life satisfaction than typical ageing parents.
- Some families (30%) are vulnerable and experience considerable stress. In these families, everyone may be affected by practical, emotional and behavioural difficulties the child with Down syndrome, brothers and sisters and parents.
- Vulnerable families can usually be identified in the first years of a childs life and will benefit from specific support from relatives, parent support groups and professional services.
So, having a child with DS is not the end of the world, but seems to have both costs and benefits (to some families). Also not the end of the world, though, is having the choice made available to a pregnant woman to know whether or not her child will have DS, allowing her to make a decision that is appropriate for her.
Bioethics specialists can speak much more appropriately to the ethical aspects of this issue (prenatal screening and termination) than I can. As a psychologist, though, I can hypothesize about what would draw a person to be so staunchly against others having the ability to choose for themselves in this particular situation. I see two primary forces at play here.
First, based on my (admittedly brief) research into Saving Downs and the people most vocally in support of it, it seems that underlying the overarching “Keep Downs Around” mentality is an opposition to abortion in general, not just specifically in the case of DS. Certainly there seems to be concern about the reduction of the DS population, but if I were a betting man, I would place high odds that the majority of SD members are also anti-abortion/pro-life advocates.
Another second factor of influence could be cognitive dissonance. In cognitive dissonance, there is a disconnect between a person’s actions and their beliefs (i.e., you talk the talk but don’t walk the walk). For instance, let’s say I am a cigarette smoker, but at the same time I am aware that doing so is pretty terrible for my health. What happens next is that I become aware of this inconsistency between beliefs and actions, which then causes people to become anxious and uncomfortable (e.g., “Shit, I’m killing myself by smoking but I can’t stop it.”). We then try and resolve this uncomfortable dissonance in one of three ways: change our beliefs (“Ah, these can’t really be that bad for me”), change our actions (“I’m going to stop smoking”), or change our perception of the action (“I know these are bad for me, but I’ll stop smoking before I get married/have kids/some other milestone”). In other words, you rationalize your own behaviors even if they aren’t all that rational.
Now, why would I bring cognitive dissonance into this discussion? Well, many outspoken critics of prenatal screening for DS (and the subsequent decision by parents to terminate the pregnancy) have direct ties to the DS community. By this, I mean they have a child or relative with DS. Some notable (but not associated with SD, as far as I know) persons in this mindset would include George Will and Lord Brian Rix. Importantly for this article, Mike Sullivan (the spokesperson for SD) has a daughter with Down Syndrome, as apparently does another one of the primary contacts for the organization.
Looking at this from a cognitive dissonance framework, you could say most people (and I think this is an accurate statement, but would be open to data proving me otherwise) have a belief (“Down Syndrome is a disabling condition”) that does not match with a certain action (choosing to have a child with DS). But then, you either have a child with DS, or you have a test that diagnoses a fetus with DS. What do you do at that point? Three options spring to mind to reduce the dissonance between belief (DS is bad) and action (having a child with DS):
- You can then change your beliefs to “Down Syndrome is not a disabling condition.”
- You change your actions to terminating a pregnancy after a prenatal DS diagnosis.
- You rationalize having a child with DS with the belief that DS is disabling by saying “For some families it may be hard, but we are strong and can handle this, and it will have benefits for us.”
For the people in Saving Downs, they appear to have reduced their dissonance by changing their belief, now saying that DS is not a disabling condition and therefore should not be something that is “screened out” of the population. For the apparently 90% of New Zealanders who elect to terminate their pregnancy after receiving a positive for DS test result, their dissonance is instead reduced by changing their behavior. I would imagine that the people who have a DS child after electing to not have the screening would use the rationalization route to dispel their dissonance by perceiving their choice as “it was the right choice for us, and we wouldn’t do a thing differently if we could.”
So, using this framework, you can understand a bit better the reasons why the people behind Saving Downs think the way they do, as well as why Professor Jones and those that elect not to carry a DS pregnancy to full term think their way. Expanding this a bit, we can see that Jones’ statements of DS as being disabling and that people suffer from it are likely to strike a very raw chord with the SD crowd, as it directly contradicts their new, dissonance-reducing belief system. This, in turn, likely could cause them to doubt their reformulated belief, triggering that uncomfortable inconsistency and a need to reduce it by once more asserting their new belief (e.g., that DS is not disabling or a problem for families) and attempting to squash any further assaults on their new belief (by silencing Jones).
Who’s right in the DS screening debate? I certainly don’t know. What I do know, though, that the bullying behavior of SD is quite reprehensible, even if it is understandable from a psychological perspective.
