Foetal Abnormality

A number of groups representing people with disabilities are calling for foetal abnormality to be excluded from being a reason for legal abortion.
  • Prenatal genetic diagnoses are seen as a 'slippery slope' which will lead to discrimination and elimination of all disabled persons.
  • China wants the right to life to apply only to those already born so it can continue to "relieve burdens on society."
  • Amniocentesis is not a fool-proof process and can have dangers, including miscarriage of a healthy foetus.
  • Amniocentesis is usually offered to women over 36 years of age.
  • Genetic counselling is recommended for all women wanting amniocentesis.
Prospective parents hope that their baby will be born without any impairments or disability. Advances in medical technology now enable doctors to identify disabilities within the early weeks of pregnancy. It is common practice for the doctor to recommend an immediate legal abortion.

The understanding is that if the abortion is performed as early as possible, it will be safer and less psychologically traumatic. The couple are usually advised that termination is the sensible decision, and consoled with the prospect that they can try again.

Current medical practice raises serious ethical questions and is seen by some to have disquieting historical connotations with the eugenics movement, particularly the T4 programme during the Nazi era.

Governments and health authorities are faced with ever-increasing demands for funding and resources. Providing support services for disabled persons is expensive and draws on funds that some feel would be better spent in other areas. Some government departments are already looking at ways of scaling down services to people with disabilities. 

Prenatal testing and diagnosis
Doctors can now test for disabilities in the early weeks of the first trimester (12 weeks). Most testing is done around 15 to 20 weeks.

The most common genetic abnormality is Down syndrome affecting one in 800-1000 live births.

It is usually associated with women becoming pregnant at an older age. When the mother is under 25, the occurrence of Down syndrome is one in 1000-2,000 births; for women aged 30 one in 1,000 births; and for women at 40, one in 100 births. These figures vary slightly with different studies .
92% of Down's syndrome foetuses detected prenatally are aborted.

A large 1991 study revealed that approximately 92% of foetuses with Down syndrome detected prenatally are aborted.

A Danish study found that one-third of babies who were diagnosed as chromosomally abnormal with Turner’s syndrome, and not aborted, turned out to be normal.

Neural tube defects cause conditions known as spina bifida (open spine), anencephaly (lack of brain formation), and encephalocele (an abnormal closure of the spinal column). Babies with anencephaly usually die within a few hours or days of birth.

Major congenital malformations occur in around 2% of pregnancies and up to 50% of these will be detected in a well performed ultrasound at 18 to 20 weeks gestation. However, ultrasound does not detect all abnormalities — a perfect healthy baby cannot be guaranteed. 

The perspective of people with disabilities
Routine abortion following prenatal testing, profoundly disturbs many people with disabilities. They fear that medical attitudes of “search and destroy” will influence peopel to regard them as “burdens” on the community.

Alison Davis, co-ordinator of No Less Human, a British advocacy group for disabled persons, wrote about their concerns in March, 2003.
Pressure is put on pregnant women to be diagnosed for disability and agree to an abortion if problems are found.

She wrote of the pressure put on pregnant women to be diagnosed for disability and agree to an abortion if problems are found.

“The Association for Improvements in Maternity Services reported having ‘a stream of complaints’ from women who tried to refuse pre-natal tests and were ‘bullied or treated like pariahs.’ They noted that this had the effect of some women choosing not to have any pre-natal care until 24-weeks to avoid pressure to be screened and to abort if a disability was detected.”

Davis criticises the lack of counselling support for women who choose to continue with their pregnancy.

Informed consent about the foetuses disabilities
Alison Davis asserts that many women advised to agree to an abortion, may not be adequately informed about their baby’s condition. She cites a survey in which 60 women were asked to rate how much they knew about Down’s syndrome.
“ Doctors are notorious for giving negative judgements about the lives of disabled people."

The majority knew very little and complained that they were not adequately briefed or prepared before the nuchal translucency test.
“Sadly this ignorance of the facts about disability is not just on the part of parents. Dr Theresa Marteau, Professor of Health Psychology at Guy’s and St Thomas Medical School, London, has described a study of 84 consultations with parents prior to pre-natal testing for Down’s syndrome.”

“Only two of the consultations included any information at all about Down’s syndrome, and both of those were inaccurate. It is clear that parents are sometimes given ‘grossly inadequate, or frankly misleading’ information about their child’s disabling condition.”

“Some parents are not even given details of support groups which could give accurate information. Doctors are notorious for giving negative judgements about the lives of disabled people."

The condition is not what or who I am
“Much of the difficulty in giving parents information about disability in their unborn child, stems from the fact that doctors are trying to describe a disability without mentioning the person who has that condition.”

Spina bifida is what I have, not what I am, but many doctors refer to me as being a ‘spina bifida.’
“It is rather like trying to describe a short-sighted person by stating the prescription for his glasses. Spina bifida is what I have, not what I am. But still many doctors refer to me as being a ‘spina bifida.’ In a similar vein, parents are asked to make life-or-death decisions about a person, of whom they know nothing except that they have particular conditions.”
Peter Singer on dealing with the disabled
Peter Singer, now Professor of Bioethics at the Centre for Human Values, Princeton University, is a known advocate of abortion for disabled babies and lethal treatment after birth. 

He said: “Killing a disabled infant is not morally equivalent to killing a person. Very often it is not wrong at all.” 

He is opposed to killing animals. In his 1993 book “Practical Ethics”, he argued in favour of killing newborn babies with spina bifida and Down’s syndrome, up to 28 days old. More recently, he allows that it would be more humane to kill the baby as soon as possible after birth.
When Singer compares severely disabled babies to animals, he has been accused, by disability activists, of insulting the disabled. In fact, what he wants is to make us take cows, pigs and dogs far more seriously. He believes that severely disabled or defective animals who cannot live except in terrible pain, can legitimately be killed. Singer believes that this should also be the case for human babies. He says: 
“Almost everybody accepts that some people can be killed. The concept of brain death’ – the belief that people on respirators can legitimately be killed – shows that. We have begun to think in terms of quality of life, instead of all life equally being sacred. That’s why it is logical to now start thinking about severely defective babies, and whether it is always wrong to kill them.

"All I say about severely disabled babies, is that when a life is so miserable it is not worth living, then it is permissible to give it a lethal injection. These are decisions that should be taken by parents – never the state – in consultation with their doctors.

"What do people think amniocentesis and the selective abortion of Down’s Syndrome foetuses are? All I am saying is, why limit the killing to the womb? Nothing magical happens at birth. Of course, infanticide needs to be strictly legally controlled and rare – but it should not be ruled out, any more than abortion."
"...the care of the disabled consumes substantial time and resources on the part of the caregiver.”
The economics of pre-natal testing and eugenic abortion
Joyce Arthur of the “Pro-Choice Action Network” in Britain, argues that “the issue of abortion for genetic reasons is not about the eugenics or discrimination against disabled people. However, the care of the disabled consumes substantial time and resources on the part of the caregiver.”

She notes that most parents do not feel they can give up their disabled child for adoption. Even if others raise the child, it merely shifts the burden. It is unfair that taxpayers should have to foot the bill for the institutionalised care of a disabled child, if the parents don’t want the responsibility themselves.

Joyce Arthur says: “The planned birth of a disabled child could even be considered a form of child abuse, as disability tends to impose a poor quality of life on people.” She argues that disabled babies have a right not to be born.

Test cases of “Wrongful Life” lawsuits
A doctor comments:
"The Los Angeles Times reported that a California couple whose daughter was born with spina bifida sued their doctor for “wrongful life,” alleging that they were not informed of their daughter’s condition prior to her birth and given the opportunity to consider abortion.
"The doctor should have detected the child’s condition and informed the parents prior to birth—this should be the standard of the medical profession. The doctor should not, however, be required to present abortion as an option. Most states have conscience clauses protecting medical professionals—provisions in state law that immunize medical professionals form liability for refusing to take part in abortions.

"I’m not sure how the case law treats failure to advise that abortion is a “medical option,” but it shouldn’t treat such failure any differently from a doctor’s refusal to perform one. The same policy concerns—protecting the consciences of medical professionals—are equally applicable to physicians who refuse to present abortion as an option as they are to those who refuse to perform the abortion itself. 

"If allowed to proceed, such suits could subject medical professionals to legal liability for failure to present abortion as an option - even if that refusal is due to religious reasons. Free Exercise jurisprudence being what it is under Smith, the state can probably do this constitutionally, but they should not do so as a matter of policy—forcing physicians to choose to follow their consciences or face legal liability benefits no one." 
Nicholas Perruche
Nicholas was born in January 1983. Four weeks into his gestation, his four-year-old sister contracted German measles. His mother, aware that German measles can cause severe congenital handicaps, told her physician that if she tested positive for the disease she wanted an abortion rather than risk giving birth to a severely handicapped child. Mrs. Perruche underwent two blood tests, two weeks apart. Laboratory error gave contradictory results. Instead of pursuing the matter further, her physician advised her that she could "safely continue her pregnancy."

Nicholas's profound handicaps became evident soon after his birth. He cannot hear, cannot speak, and is mostly blind. His heart is weak. He moves only when carried or put into a wheelchair. Mrs. Perruche suffered a mental breakdown when Nicholas was two, requiring psychiatric care. His parents subsequently divorced.

Today, Nicholas lives in a government institution and spends alternate weekends with his mother and father. But his parents were concerned that after the age of twenty, he would probably have to leave the institution and require permanent private care. The family first went to court in 1988. Arguing that the error of the laboratory and the physician had brought suffering to the family, the Perruches were awarded approximately $13,000 in damages.

"Wrongful birth" suits claim that the negligence of health-care providers  prevent the mother from exercising her right  to abortion.
Had the case ended here, it would have been novel enough, presenting the first appearance in French legislation of a concept native to the U.S. legal landscape, namely, "wrongful birth." "Wrongful birth" suits claim that the negligence of health-care providers (e.g., failed sterilisations, failing to inform about a prenatal test, or misdiagnosing a foetus's handicap) prevent the mother from exercising her right of autonomy and thus to abortion.

But Nicholas's case is not solely one of wrongful birth. In addition to arguing for damages on their own behalf, the Perruches sued the laboratory and the physician on Nicholas's behalf, arguing that Nicholas himself had been harmed by their errors. On four occasions, Nicholas was awarded damages, but each time the verdicts were reversed on appeal.

The Cour de Cassation, the French equivalent of the Supreme Court, upheld a 1991 lower court ruling that awarded Nicholas damages. The court argued that because the errors of the physician and the laboratory "had prevented Mrs. Perruche from exercising her choice to end the pregnancy in order to avoid the birth of a handicapped child, the latter can ask for compensation for damages resulting from his handicap." The Perruches were awarded about $68,000 with a further $250,000 to cover the cost of Nicholas's lifetime care.

Ethicists criticised the French court decision for encouraging eugenics.
With this decision, the French courts imported the additional U.S. concept of "wrongful life." The ruling caused an uproar in France. Persons with disabilities criticized the decision as demeaning of them as human persons. Ethicists criticized it for encouraging eugenics.

The first successful "wrongful life" case in the United States was the 1984 decision of the New Jersey Supreme Court in the case of Peter Procanick (whose mother, like Josette Perruche, contracted German measles in her first trimester). But Procanick saw no overwhelming congressional response. U.S. obstetricians and gynecologists certainly did not go on strike. Ethicists seem to have barely batted an eye. 

The reason for the different response lies in the respective countries abortion laws.

In France, abortion is available up to the tenth week of pregnancy to any woman "whose condition places her in distress."
In France, abortion is available up to the tenth week of pregnancy to any woman "whose condition places her in distress." "Distress" is simply defined by the woman. After ten weeks, only "therapeutic" abortions are permitted, for situations that pose a threat to the woman's health or when "there is a strong possibility that the unborn child is suffering from a particularly serious disease or condition considered incurable at the time of diagnosis."

Disability, feminism and eugenics
In 1996, Australian Joan Hume delivered a paper to the Women’s Electoral Lobby National Conference in Sydney. Her paper was titled "Disability, Feminism and Eugenics: Who has the right to decide who should or should not inhabit the world?" 

Hume said that the subtitle of the paper was a rephrasing of a question asked by Hannah Arendt in her book about Adolf Eichmann and the Nazi extermination programme “Who has the right to decide who, or who should not inhabit this world.” 

“In this paper I wish to explore the implications of the resurgence of the ‘new eugenics’ as a philosophy underpinning modern reproductive practices, from the perspective of the abuse and denigration of the rights in people with disabilities in general, and women with disabilities in particular.”

These practices infringe women’s rights and should be a matter of grave concern for all feminists.
“These practices, I believe also infringe women’s rights and should be a matter of grave concern for all feminists. The following discussion is not about the rights and wrongs of the abortion debate, but adopts a disability-rights interpretation of new reproductive and genetic technologies.”

“In the United States compulsory sterilisation laws were passed in the early 1900s. By the 1930s, in addition to sterilisation laws, 41 states had laws which prohibited the marriage of the “insane and feeble-minded”, 17 prohibited the marriage of people with epilepsy; four outlawed marriage for ‘confirmed drunkards’. By January 1935, some 20,000 people with disabilities had been sterilised, nearly half of them in California. The Californian law was not repealed until 1980, and more than 20 states today still have operative eugenic laws.”
Respectable eugenics in pre-war Europe
In the 1920s in pre-war Germany, a book was coauthored by Alfred Hoche, a noted psychiatrist, and Karl Binding, a prominent scholar of criminal law. In "Permission for the Destruction of Life Unworthy of Life," they argued that economic savings justified the killing of "useless lives. This book came at a time of great economic stress in Germany and the way for eugenic euthanasia had already been paved by mass starvations in German mental hospitals in World War I

Hume says, "It is important to stress that its origins were not based in Nazi doctrine, but adopted by the Nazis at least a decade after tireless promotion by the medical profession, particularly prominent psychiatrists.”

In the 1920s and 1930s not only Germany but much of Europe promoted eugenic ideas with forcible sterilisation of the 'unfit.' The Nazis took office in 1933 and passed sterilisation laws  in 1934. These laws, written by eminent doctors, targeted genetically-determined conditions such as ‘inborn feeblemindedness, schizophrenia, manic depression, hereditary deafness, blindness, epilepsy, Huntington’s disease, severe malformations and alcoholism. 
Eugenic sterilisation laws aimed at people with disabilities were passed barely six months after the Nazis took office in 1933.
Although harsher than other European countries, Germany's law represented the view of many of the 'experts' at the time.

Some 60,000 people subjected to sterilisation in Sweden between 1935 and 1976. Most were women, and the majority were labelled as mentally defective, although most probably had only minor physical or social disabilities.

In Germany 300,000- 400,000 people with disabilities were sterilised under this program by 1939. These sterilisation laws and the subsequent euthanasia programme were aimed at ‘lives not worthy of living.” They were implemented as being in the better interest of public health and as an economic imperative.

The link between then and now is the medical profession's reluctance to accept deformity, disability and abnormality of any kind. Being unable to effect a 'cure' many look to abortion to make the problem go away.

Detecting foetal abnormalities
In Australia, Hume says that the although the law does not sanction the sterilisation of women with intellectual disabilities, it is practiced "privately and covertly." 

She points to an article published in The Weekend Australian entitled "Death Before Deformity," which apparently examines the impact of new pregnancy tests on the incidence of foetal abnormalities in the Australian population and the attitudes towards disability which are sanctioning these practices. The writer of the article sees society moving " slowly but surely down the road towards an expectation of a perfect baby - or rather one free of major imperfections." 

Hume reports that:
  • In Victoria, the number of malformed foetuses terminated under 20 weeks gestation rose from 153 in 1992 to 186 in 1994
  • In 1993, 61 Down's foetuses were diagnosed in Victoria, all of whom were terminated
  • In South Australia in 1991, more than 70 % of foetuses with spine bifida were terminated compared with about 20% in 1980
  • In 1987, 22% of all Down's pregnancies in South Australia were terminated but since a certain diagnostic blood test has been available to all South Australian women the proportion seeking termination for Down's Syndrome rose to 60%.
There is an increasing trend to abort for abnormalities of less severity, such as a missing hand
Where such eugenic abortions were once performed almost solely for severe abnormality, it is becoming more common for women to choose to abort for relatively minor reasons, that are easily correctable by surgery (e.g., a 'hare' lip or cleft palate).

Women who have chosen to give birth to children with Down syndrome, or other disabilities, frequently comment how these children have enriched their lives. This leads disability groups and others who are opposed to eugenic abortions to believe that the increase in abortions for foetal abnormalities is largely based on fear and ignorance of the particular disability rather than on unbiased information. 

There are, of course, some parents who just don't want the hassle of a less than perfect child. Some claim that disability is (or can be) so burdensome for the family of the disabled person that this alone justifies abortion of a disabled unborn child. In 2001 in the UK, doctors aborted a 28 week old foetus with a bilateral cleft lip and palate (the Chief Crown Prosecutor decided not to prosecute the doctors involved).  A baby born prematurely at 28 weeks has a 91% chance of survival.

Under Britain's Abortion Act, as it was amended in 1990, it is legal for doctors to terminate the life of a foetus up to the point of birth if there is a "substantial risk" of the child being "seriously handicapped". Some people are calling for a clarification of the definition of "serious handicap."

Women, and men, have reported that when an abnormality has been discovered by pre-natal tests, doctors have often painted a pessimistic future for the child, if permitted to be born, based on a 'worst case scenario.' It has also been reported that there are seldom referrals to organisations that can give accurate information and support from others who have children with the same diagnosed condition. Disability rights groups have claimed that this is often due to ignorance on the part of medical professionals, and, in some cases, prejudice.

Pre-natal screening and eugenic values
People with disabilities are angered by the presumption that a pre-natal test that test positive for an disabling condition will inevitably be followed by an abortion. They have gathered stories of women with disabilities who have been under pressure not to have children, as well as non-disabled women who have been subjected to pressure to choose abortion when a foetal abnormality is detected.
The prospect of having a disabled child is not acceptable for many prospective parents

Women is these situations have been given to understand that it is neither socially acceptable nor responsible to carry to full term a foetus that has a disabling condition.

In "Disability, Feminism & Eugenics," Hume has this to say, "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."

The tendency to try to eliminate disability through abortion is seen as having disastrous implications for people with disabilities. One of the most serious aspects of this policy is that it is seen to advance attitudes and practices that encourage a phobia toward people with disabilities.

People without disabilities tend to believe that those who are disabled lead blighted, tragic lives.
Hume points out that there is a "tendency for people without disabilities to believe that those who are disabled lead blighted, tragic lives." She goes on to say:

"People with disabilities feel that this view ignores and invalidates their actual lives and experiences. Activists have repeatedly asserted that it is not the disability so much which restricts equality and full participation in society, but the combination of social stigma, systemic barriers and persistent use of demeaning devaluing language."

Disability activists point out that just as poverty can't be eliminated by killing all poor people, disabilities can't be eliminated by killing all unborn children who test positive for disabling conditions. What is needed they say is the eradication of all forms of discrimination against people with disabilities.