This week the Harvard Gazette published an article on the “new test for Down syndrome”. It contained the usual offensive language about our community. It contains the usual misleading information about screening. It introduces a new Trojan horse of a “future treatment” to defend harmful current practice. All in a brief, typically medical focussed, article that uses smoke and mirrors to defend Down syndrome birth prevention programs.
The article reports on a presentation by Diana Bianchi, executive director of Tufts Medical Center’s Mother Infant Research Institute at the Harvard Medical School. She has a long record of being involved in developing and promoting birth prevention measures against the Down syndrome community. The Tufts Medical Center represent themselves as “an internationally-respected academic medical center – a teaching hospital where we pride ourselves not only in the sophistication of the care we provide but the compassionate way in which we provide it.’ The Harvard Medical School themselves has, as a Core Commitment, the noble “Service to Humanity”. Unfortunately we see little compassion or service to humanity in the article. One is left wondering how many people with Down syndrome Bianchi knows and loves.
To set the context: when discussing screening for Down syndrome we firstly need to acknowledge that mothers are under health care for the loving, nurturing and trusted support of their wanted pregnancies. Some parents choose screening and/or diagnostic testing to prepare for the birth of their child in a way that is respectful and loving towards their child. However, almost all unborn children diagnosed with Down syndrome are selectively aborted, with further wanted pregnancies lost through invasive testing which carries the risk of causing miscarriage and harm to an unborn child. The dignity of a child does change with a diagnosis of Down syndrome. We advocate that the focus on health care and the love and support of that wanted pregnancy shouldn’t change as a result of a diagnosis. Any discussion that simply presents advances in screening as a “good thing” without addressing the inherent harmful, discriminatory, ablest and eugenic outcomes of current practice offends the basic principle of the dignity of all human life.
Now, let’s get underway in breaking down the language used and understanding what she is actually saying whilst not saying it. The article starts with:
“A new, noninvasive screening test for Down syndrome would allow some women with high-risk pregnancies to avoid amniocentesis and in the future may provide detection early enough for treatment to improve some babies’ cognitive function.”
So, in the very opening statement we have Down syndrome presented negatively as a “risk”. There is nothing wrong with having Down syndrome, is a naturally occurring condition that has always been part of humanity. Presenting a group of people as a “risk” reflects the discriminatory bias of the author. It has nothing to do with those with Down syndrome, who have dignity, like all of us, by simply being human.
We then have new noninvasive screening presented positively to avoid amniocentesis. This is because amniocentesis caries the risk of death and harm to the unborn child. Whilst reducing harm through amniocentesis is a good thing, the implication here is that reducing harm to unborn children without Down syndrome is a good thing, whilst continuing, or even increasing harm, to those with Down syndrome is not considered to present a concern – remember that almost all unborn children diagnosed with Down syndrome have their lives ended by medical intervention. The ethical response to harm is to reduce harm to all on an equal basis. What we have here though, is an unspoken view that the value of one group of human beings has worth and shouldn’t be harmed, whereas the other group (we all know which one) can be harmed because of their genetic difference. Only the collateral damage seems to present a concern to the promoters of new screening technology.
It can’t even be implied that the new tests are safer or reduce the need for amniocentesis. As pointed out in a previous blog relating to screening in the UK, the new tests were hailed as potentially saving 300 lives per year. But, when you break it down it actually means that the saving of 300 “normal” babies could be at the cost of over a further 700 babies with Down syndrome who are selectively aborted, resulting in a potential net increase in harm of around 400 lives a year lost. So the new tests likely increase harm to pregnancies. It’s just that some lives are more valued by the promoters of screening than others. Bianchi is an expert in this area and should be upfront and honest about these matters.
Bianchi then introduces the Trojan horse argument that the new tests present an opportunity to improve cognitive function of babies. This is a Trojan horse because the new tests are about reducing harm to “normal” babies whilst finding those with Down syndrome for selective abortion. There is no therapeutic benefit to the child that relies on a diagnosis before birth. Birth preparation and increased pregnancy care can be made following an increased chance screening result. Parents who want to know before birth for their own preparation through an (almost) definitive diagnostic test such as amniocentesis or CVS should be clear about the risks to the health of their child, which statistically outweigh any likely benefit to their child.
Screening programs have only ever been developed to prevent the births of people with Down syndrome because of society’s negative bias against them. Government’s fund national screening programs because birth prevention is considered to be cheaper than providing support.
Bianchi’s statement is also a Trojan horse because she is speculating that a future possible “treatment” may be available. A future possibility cannot be used to justify a current action that harms the Down syndrome community, that’s ethics 101. To suggest that some “future oppurtunity” may arise to defend current advances in stopping people with Down syndrome from being born is offensive.
Then there is the whole concept of improving cognitive function itself. Again, Bianchi is starting from a discriminatory bias, this time that there is something wrong with people with Down syndrome and that they need improving. It’s the old, tired and failed medical model of disability. People with Down syndrome, are, well, people, and we don’t generally go around telling other people that they need fixing. Our community faces daily discrimination from a society that disables those with a genetic difference. Rather than assuming we need to “improve” people with Down syndrome, we first need to be having them at the centre of the debate and remove those social barriers they face, rather than having the medical profession tell them what is best for them.
So, in one short paragraph Bianchi has presented Down syndrome negatively as a risk, presented their lives as of less worth than their fellow humans, falsely implied that the new tests reduce harm when they are likely to increase harm, and presented a Trojan horse that a harmful screening program may have a future benefit in fixing people with Down syndrome rather than stopping them being born.
The misinformation goes on:
“Physicians recommend that all pregnant women undergo initial screening for Down syndrome, and it is recommended that those with positive results undergo amniocentesis, in which a long needle is inserted into the mother’s uterus to extract cells in the fluid around the fetus.”
This is not correct. In the US professional medical societies for obstetrics, genetic counseling, and prenatal diagnosis have issued statements saying the test is only recognized for women already considered at a higher chance for having a child with Down syndrome. That’s very different from “all pregnant women”. There is no justification as to why women should undergo screening for Down syndrome or undergo amniocentesis or CSV and expose their children to harm. It is just presented as something that should be done. No therapeutic benefit is proposed, which places it as being unique amongst other life affirming medical practices. It’s as if were invited to accept that “Doctors know best” and embark blindly down a path that can harm our children because they have decided that people with Down syndrome are less human than others.
Bianchi goes on to reiterate:
“Those alternate screening tests miss 8 percent of Down syndrome cases, however, and also give false positive results about 5 percent of the time. That means that some women may undergo amniocentesis, which, in addition to being invasive, bears a slight risk of causing miscarriage.
The new test, according to Diana Bianchi, executive director of Tufts Medical Center’s Mother Infant Research Institute, misses only a very small fraction of Down cases, meaning that fewer women would need amniocentesis.”
Now there is a whole heap of confusion going on here. On the one hand she is saying that “alternative screening tests” miss 8% of cases and that the new tests would reduce the number of amniocentesis. That’s misleading, the new test is a screening test that gives a chance result. A diagnosis requires an invasive amniocentesis or CVS test. To find the missing 8% would require invasive tests for those pregnancies. Given that almost all diagnostic tests result in the death of the patient, those 8% may actually be happy to have escaped the screening net.
On the other hand she adds confusion by bringing in the 5% false positive results. These are pregnancies with a positive screening for Down syndrome when the child doesn’t have Down syndrome. Most of these unborn children are killed through a selective termination or from an invasive test. But, this is all smoke and mirrors. The underlying assumption here is that harming those without Down syndrome is wrong and that harming those with Down syndrome is acceptable, or even desirable. Two class of human beings, one worthy of life, the other unworthy of life. This attitude by medical professionals is offensive and devalues the lives of those living with Down syndrome and other disabilities. Anything that devalues the lives of people with Down syndrome is unacceptable. The ethical focus would be to reduce harm to all of those pregnancies.
The article concludes with:
“Bianchi pointed out some of the pitfalls to approaches that utilize prenatal screening, including the potential for physicians to learn uncomfortable information, and be faced with the difficult decision of whether to share it. Another challenge, she said, is the pressure not to make a mistake, since some disappointing results may prompt parents to terminate a pregnancy.
“You better be accurate, and you better be sure you’re giving parents accurate information,” Bianchi said.”
Again, the negative language in “disappointing results” as if children are some sort of disposable commodity. And, the inference that a termination of a pregnancy as a result of a mistaken diagnosis would be a bad thing (and it is), whilst terminations involving Down syndrome is just “giving parents accurate information”. Two classes of human beings. One worth saving, the other not. And the need to be accurate – we wouldn’t want them slipping through the net now, would we?
The Harvard Medical School has as a Core Commitment of “Service to Humanity”. On this occasion, though, they have failed miserably in that goal, doing the Down syndrome community one big dis-service in their article. Not so, with one of their esteemed Associates though, who shows how this subject is handled according to the principle of service to humanity.
International disability rights expert Janet E. Lord is a Senior Research Associate of the Harvard Law School Project on Disability. She has recently published an extensive paper on the application of the UN Convention on the Rights of Persons with Disabilities (CRPD) in relation to disability screening programmes. Her qualifications in this field are impeccable. Ms. Lord participated in all of the drafting of the CRPD, serving as advisor to lead governments, expert to the United Nations and legal advisor to Disabled Peoples International. She is a leading expert on the CRPD, publishing widely in the field and designing and implementing disability law and policy reform in more than 30 countries worldwide. She knows her stuff and walks the talk.
Janet’s paper and our blog are both worth reading in detail for those wishing to pursue concerns around disability screening from a disability rights and social justice perspective. The following is the summary of her paper and demonstrates a true service to humanity in this subject area. Janet has this to say about antenatal screening for Down syndrome:
“A disability rights critique casts serious concerns over the wave of genetic testing, in particular antenatal screening.
The historical disadvantage of persons with disabilities has been shaped, reinforced and perpetuated by the idea that disabling conditions represent abnormality and pathological defect. Invidious stereotyping continues to exclude and isolate persons with disabilities who have not generally been accorded the full or equal enjoyment of human rights that international law demands.
The CRPD supports the accommodation of impairment as a natural feature of human diversity. It includes among its general principles respect for human difference, along with non-discrimination, inclusion and participation, all of which are salient features of a disability analysis applicable to law, policy and programming, including prenatal screening programs that may impact whether persons with disabilities are born.
Against these developments, disability advocacy organizations and the body that monitors CRPD implementation – the Committee on the Rights of Persons with Disabilities – are starting to turn their attention to the impact of disability selective screening policies on persons with disabilities and their families, much as sex-selective screening and abortion has triggered concerns – and conflict – among human rights advocates. Some commentators assert that disability-specific screening policies impart the harmful the message that persons with disabling conditions are unwelcome in society.
Moreover, screening for immutable disability characteristics such as Down syndrome – where there is no potential therapeutic value – reinforces internalized oppression according to which disabled persons are devalued, tagged with their impairments and branded as a burden (Newell, 1999; Houghton, 1994; Davis, 1987). Others suggest that the way such screening protocols are implemented in practice has a major impact on birthrates of certain groups of persons with disabilities, ultimately raising serious ethical questions about what kinds of people should be born. Screening policies as practiced also raise human rights concerns regarding the rights of would-be parents who are, arguably, protected against disability discrimination under the CRPD, along with other rights, including the right to information and free and informed consent to medical procedures.
A disability rights critique casts serious concerns over the wave of genetic testing, in particular antenatal screening along with embryo selection, and its implications for core principles of disability human rights such as respect for difference and non-discrimination on the basis of disability.”
The Harvard Gazette article vindicates all that Janet Lord has explained with such clarity.
So, when we see articles from medical folk like Bianchi that simply ignore a disability rights framework, let us see it for what it is. A fundamental breach of the core principles of human rights, a breakdown of commitment to serving humanity and an absence of compassion from a medical community that should be protecting the very community it harms.
Thankfully we have true advocates such as Janet Lord who work tirelessly to defend the dignity of all life and are at the coal face of a new wave of disability advocates pushing back against the new wave of medical eugenics against the Down syndrome community.
All life is precious, and we must support that through unconditional love and compassion.