Foetal abnormaility

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.

Abortion & Foetal Abnormality

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 .
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."

When Singer compares severely disabled babies to animals, he has been accused, by disability activists, of insulting the disabled.

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.

"Wrongful birth" suits claim that the negligence of health-care providers  prevent the mother from exercising her right  to abortion.

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.

These practices infringe women's rights and should be a matter of grave concern for all feminists.

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.