Down Syndrome, Dwarfism and Pre-natal Testing

The elimination of human beings solely because they have mental or physical limitations and therefore must have a low quality of life, is called eugenics.

  • People with Down's syndrome may have a lesser intellect but they are some of the happiest and most loving people.
  • Dwarfism occurs about 1 in 10,000 births and can affect any baby, any time.
  • A special acceptability of abortion is assumed when the foetus is impaired.
  • Soon it will be considered a 'sin' for parents to choose to give birth to a child that has a genetic abnormality.
  • "Discrimination based on efficiency, is no less condemnable than discrimination based on race, sex or religion."
Abortion for non-life-threatening genetic abnormalities such as Down syndrome (DS) and Dwarfism, arouses much controversy.

Abortion advocates argue such children have a low quality of life, while opponents see them as victims of discrimination.

Down syndrome children have distinctive facial features and personalities

People with DS are said to be some of the happiest and most loving people one can meet. DS is genetically determined. People who have the syndrome have an extra chromosome. This has an effect on their physical appearance and it may also affect their health, perhaps causing heart defects or hearing difficulties.

Those who have DS may not be as intellectually quick as other people, but they are able to learn and to take part in physical activities such as dancing, swimming or horse riding.

Dwarfism
Dwarfs refer to themselves as "Little People." Their short stature is primarily caused by their bones not growing and developing normally. Dwarfism in most cases is genetically determined.

During childhood most dwarfs encounter progressive deformities, which can lead to disability. There can be breathing difficulties, gradual paralysis, which might eventually be fatal. Treatment to correct deformities and return mobility can enable the affected person to live independently.

Dwarfism can affect any baby born anytime, about 1 in 10,000 births. Most children with dwarfism are from average stature parents. Any couple can have a child with dwarfism.
Family history and parent's stature are usually not relevant to the child's dwarfism.


Family history and parent's stature are usually not relevant to the child's dwarfism. Some syndromes are caused by genetic mutations at the moment of conception. Other syndromes are caused by the random combination of two recessive genes that may have been dormant for generations.

Pre-natal testing
Currently most testing is done around 15 to 20 weeks into the pregnancy. The most common diagnostic tests are the triple screen (a combination of alpa-fetoprotein, HCG, and estriol, used primarily to detect DS), ultrasonography, amniocentesis, or a combination of any of these tests.

Another test is chorionic villus sampling (CVS), usually carried out between 8 to 12 weeks. Some medical studies have found the miscarriage rate to be higher following CVS than for amniocentesis.

The most common genetic abnormality is DS which affects one in 800 births. DS is most often associated with women who become pregnant at older age. For women in the 18-year old age group, the occurrence of DS is one in 2,100 births. For women aged 30, it is one on 1,000 births; and for women 40, one in 100 births.

Although not considered a severe disability, a large multi-institutional U.S. study published in 1991, showed that 92% of DS foetuses detected prenatally, were aborted.

One tragedy to this statistic that most people overlook is that waiting lists of people exist to adopt these children. These deaths are seen by some to be a great loss not only to willing adoptive parents, but society as a whole.

In September 2005,during the confirmation hearings regarding the appointment of presidential nominee Judge John Roberts as Chief Justice of the U.S. Supreme Court, Senator Sam Brownback spoke of a young man named Jimmy diagnosed with DS who operates an elevator in the Senate building.

His warm smile welcomes us every day. We're a better body for him. He told me the other day - he frequently gives me a hug in the elevator afterwards. I know he does Sen. Hatch often, too, who kindly gives him ties, some of which I question the taste of, Orrin ...

(LAUGHTER)

And Jimmy said to me the other day after he hugged me; he said Shhh, don't tell my supervisor. They're telling me I'm hugging too many people.

(LAUGHTER)

And, yet, we're ennobled by him and what he does and how he lifts up our humanity and 80 to 90 percent of the kids in this country like Jimmy never get here.

What does that do to us? What does that say about us?
Read here
Discrimination
Tom Shakespeare, a sociologist at the University of Newcastle in the UK who happens to have achondroplasia (a form of congenital dwarfism), argues that the option of abortion for a range of genetic disorders places a negative value on people with the condition, and implies that it is socially desirable to prevent the birth of certain foetuses. He says,

"Current law discriminates against the impaired foetus. The law should not discriminate between an impaired and a non-impaired foetus: a common time limit should be adopted for all pregnancies." 1

A paper "Termination of Pregnancy for Reason of Fetal Disability", was delivered by Dr Sally Sheldon, Departments of Law and Philosophy at Keele University. The venue was Pro-Choice Forum, Queen's University, Belfast, 25 November, 2001.

After examining the areas of discrimination, Dr Sheldon summarises:
"There is a danger that the special acceptability of termination will be assumed in cases where all, or most of the harm is caused by social discrimination. If parents would feel able to care for a disabled child with greater social assistance, and in the absence of prejudice and discrimination, then legally to endorse termination because prejudice exists and assistance will not be forthcoming, is worrying."
The availability of abortion may conceal the pressure placed on potential parents by the lack of financial and other support.

Whilst any society will have to make a choice about where resources are to be allocated, the availability of abortion may conceal the pressure placed on potential parents by the lack of financial and other support."

"The fundamental basis of the current regulation of abortion in England, Wales and Scotland is seriously flawed. Two doctors are deemed better paced to judge the strain put on parents by the birth of a disabled child, than the parents themselves. What special expertise do doctors have in this regard?"

It is unreasonable to expect a doctor to have special expert insight into particular parents' ability to raise a disabled child, and the positive and negative impact which such caring responsibilities will have on them."
The discrimination experienced by people with disabilities, from professionals who frequently make 'quality of life' decisions can be clearly seen in the following remark. James Watson, the co-discoverer of DNA structure, in response to the disability rights advocates he encounters, argues that "seeing the bright side of being handicapped is like praising the virtues of extreme poverty".

Eugenic implications
Eugenics is concerned with improving genetic (hereditary) qualities by controlled selective breeding. This, disability rights action groups are quick to point out, is exactly the goal Hitler had in mind when he began the T4 euthanasia programme that targeted physically and mentally disabled children, elderly patients in long-term care, and invalids from World War I.

IVF pioneer Dr Robert Edwards, at a conference in France in 1999, commented: "Soon it will be a sin for parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children."

Joan Hume, a Director of Disability Australia (DA) Ltd., presented a paper to the Women's Electoral Lobby National Conference in Sydney in 1996. This adapted section covers eugenics:

Pre-natal screening and diagnostic technologies underscore the extent to which eugenic values are operating. Eugenics operates when women with disabilities are pressured not to have children. When non-disabled women are encouraged to use the tests during pregnancy to detect and eliminate ever-increasing numbers of detectable disabling conditions.

The presumption that a positive test result will inevitably be followed by an abortion is particularly repugnant to, and disrespectful of, people with disabilities.

The message about disability is negative: the prospect of having a disabled child is not acceptable for many prospective parents. The message to all women is equally clear: it is neither socially acceptable nor responsible to carry to full term a foetus with a disabling condition.
With the emphasis on "perfect babies" the message of the new technologies is that disabilities can and must be weeded out.
Hume says: "...with the emphasis on 'perfect babies' the message of the new technologies is that disabilities can and must be weeded out by eliminating foetuses with certain defective traits. This is clearly a modern version of the earlier eugenics perception that disability is inherently bad. 

"Given the continuing widespread discrimination against people with disabilities, for a woman to give birth to anything less than a perfect baby is not only socially and economically undesirable but irresponsible."

The Canadian Disability Rights Council makes the argument that emphasising the elimination of disability through reproductive technology, without addressing the social context in which they are promoted and applied, has disastrous implications for people with disabilities such as:
  • directing resources away from eliminating environmental causes of disability and from providing support for existing people with disabilities
  • ignoring the extent to which disability is a social construct.
  • entrenching disability-phobic attitudes and practices.
Disability rights' groups assert that when people, especially medical professionals and legislators, regard disability as primarily a tragic state, and consider people with disabilities to have blighted lives, they disregard actual lives and experiences.

People with disabilities denounce the idea that they are unable to participate fully in society and the workplace because of their disability. They say that the problem is a combination of social stigma and discrimination, systemic barriers (barriers that are buried within the policies and practices of an organisation that deny a person with disabilities the same opportunity for employment as a non-disabled person), accommodation for disabilities in the workplace and persistent use of demeaning, devaluing language.

Disability organisations demand, as part of their basic human rights:
  • freedom from sterilisation without their consent
  • the right to accurate, balanced information about reproductive health and disability
  • the right to refuse prenatal testing
  • the right to carry to term a foetus identified as having a disability
  • the right to adequate social and financial support for raising a child with a disability
Eugenic abortion and mercy killing
Andrew Wragg smothered his 10-year-old son Jacob who had Hunter's Syndrome (a syndrome marked by dwarfism and other severe developmental anomalies). He denied the charge of murder and claimed diminished responsibility, saying it was a mercy killing.

Wragg told the Court that when he and his wife discovered that their second child was a Hunter's carrier, they decided to have an abortion. The diagnosis came only hours after tests revealed that Jacob had the disease and would die young.

Wragg told of the moment his wife rang with news of Jacob's condition. He said: "I was in a lecture when she rang to say that Jacob was dying. The following morning the three of us went to the hospital in Hereford to see a paediatrician, who gave us the news of which disease it was. I do not think that either of us realised the implications for Henry (their unborn son). They brought to our attention that we needed to have Henry tested.

"We discussed what we would do if the results came back that Henry was a carrier. We trusted the professional who said we did not want to bring another Hunter into the world because of the terrible things that would happen to them." The couple were given two hours to decide whether or not to continue with the pregnancy and decided on abortion.

Wragg told the court that doctors failed to discuss with him the abortion procedure. With Mrs Wragg listening in court, Wragg said: "They put a 2ft-long needle straight into Mary's stomach, into the baby. They were stabbing around trying to find it, which they eventually did. It was horrific. I could not understand why they did not tell me what was going to happen. I think if I had known, I would not have chosen to be there."

Bioethicists on Down's and Dwarfism
Peter Singer, Bioethics professor at Princeton University advocates that once identified through pre-natal testing, disabled foetuses should be routinely aborted. Those that are born, should be put to death within the time limit of 28 days.
Peter Singer has allowed that death should be administered as soon as possible after birth.

More recently Peter Singer has "allowed" that death should be administered as soon as possible after birth.

According to former geneticist David King, couples in the United States are experiencing a kind of indirect pressure not only to have pre-natal tests, but to terminate pregnancies that doctors, or insurance companies, deem unfit for life.

"In the U.S.," he wrote: "there have already been hundreds of cases of discrimination by health and life insurers and employers. One pregnant mother was told if she did not have an abortion, because her child was sure to suffer from cystic fibrosis, her whole family's health insurance would be cancelled.

King quotes the philosopher, Philip Kitcher, who has dubbed the existing situation a kind of "laissez-fair eugenics." "Although no direct coercion is imposed and 'free choice' is allowed, the end result, the shaping of the future gene-pool by social pressures and prejudices is the same."

The value of each human life
"A society that only gives space to its fully functioning members who are totally autonomous and independent, is not a society worthy of man. Discrimination based on efficiency, is no less condemnable than discrimination based on race, sex or religion." (Pope John Paul 11, during an address to an international symposium on the "Dignity and Rights of the Mentally Handicapped", January, 2004)

Wrongful life lawsuits
There have been cases in France and the United States where parents have taken legal action against doctors and hospital authorities for failing to advise them during pregnancy that their baby was disabled. They argue that the failure to detect and advise of the disability, prevented the parents from exercising their legal right to seek an abortion.

Thus the disabled child should not have been born. He or she is a "wrongful life", and the doctor and authorities, it is claimed, should pay for the child's upbringing.

Reference:
1. Shakespeare, T. (1998), "Choices and rights: eugenics, genetics and disability equality", Disability and Society, 13, 5, pp. 665-682.