Abnomalities

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. 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.