1. What is Preimplantation Genetic Diagnosis?

PGD is a way of examining in the laboratory human embryos produced by "in vitro fertilisation" (IVF) technology.

(i.e. by mixing sperm and eggs in a test-tube .)

If a genetic disabling condition is found, or if the embryo carries the gene of a disabling condition, the embryo is thrown away.

If not, the embryo is implanted in a woman’s womb, in the hope that s/he will grow and develop and be born.

"Preimplantation" diagnosis means that the embryo is examined before implantation in a woman’s womb.

2. How is PGD performed?
   
   
• After being created by IVF technology, a biopsy is carried out to remove a cell from the developing embryo.
• The biopsy is usually performed 2-5 days after fertilisation, when the embryo consists of 6-10 cells¹.
• The cell that has been removed is then tested to see whether the embryo carries a genetic disabling condition.


3. Which disabling conditions can PGD detect?

PGD is used for people who have a family history of genetic disabilities, such as cystic fibrosis, Huntington’s disease and Tay-Sachs disease.

Such people can opt to use IVF and PGD technology to make sure that the embryo implanted does not have the condition in question.

4. Do parents have a "right" to a non-disabled baby?

It is natural and right that parents should hope that their children will not suffer illness or disability, and that they should give their children the best possible start in life.

There are ways of protecting unborn children from disability that are not destructive – such as not smoking or drinking alcohol during pregnancy, but taking supplements of folic acid which can prevent the disability spina bifida occurring.



These positive measures are entirely consistent with pro-life thinking. It is true that they cannot prevent every disabling condition, but it must be recognised that children are a gift, not a right, and that parents do not have a "right" to have a child, or to have a particular sort of child.

   

Children are not commodities and cannot be produced to a particular "specification".

5. Is PGD acceptable to prevent serious disability?

It is often suggested that both PGD and pre-natal diagnosis "prevent" disability, but what this means is that PGD prevents anyone with a disability being born. Instead they are destroyed before they can develop in their mother's womb and then be born.

• This is fatal discrimination, and denies the fundamental right to life of all human beings.
• It is also offensive to people living with a disability, who realise that if this technology had been available before their birth, they too would have been destroyed in the name of "preventing disability".


6. Is PGD preferable to pre-natal screening leading to abortion of disabled babies?

Both PGD and pre-natal screening aim to detect disabled individuals so that they can be destroyed – by being thrown away at the embryonic stage, or by being aborted if they are older.

• The two kinds of diagnosis are essentially the same, the only difference being the age at which the disability is detected and the disabled individual destroyed.
• The reason why the NHS is prepared to fund both PGD and screening is because they think it is cheaper than looking after people with disabilities.


7. Will PGD lead to "designer babies"?

The Human Fertilisation and Embryology Authority and the Advisory Committee on Genetic Testing suggested in 1999 that they believed it unacceptable to test human embryos for "social or psychological characteristics, normal physical variations, or any other conditions which are not associated with disability or a serious medical condition.²"

• In truth, in permitting PGD to be used to detect embryos with a disability, the concept of "designer babies" has already been approved.

"Genetic manipulation" of babies to any particular specification – for socially desirable characteristics, or for eugenic purposes - is morally repugnant.

8. Is counselling before PGD a sufficient safeguard against abuse?

PGD is unethical, because it involves facilitating the destruction of human beings, whether or not counselling has been first given to the parents.

It is important, however, to recognise that counselling is likely to be biased in favour of PGD.

• Recent studies have shown that as far as pre-natal diagnosis is concerned only 32% of obstetricians reported counselling pregnant women non-directively.
• In any case the concept of "non-directive counselling" in the field of genetics is largely a myth³.

Announcing a national pre-natal genetic testing programme for pregnant women, the Advisory Committee on Genetic Testing made it clear to health authorities that "counselling about an abortion should be given as a matter of course if the fetus is found to be abnormal.⁴"

Killing and caring cannot be presented as two equally acceptable alternatives.

Either human beings have an inherent and absolute right to life or they do not.

If destruction is presented as an ethical option, the possibility of recognising that inherent right to life is lost.

9. Does PGD respect the value and status of the human embryo?

SPUC points to the established scientific principle that the normal start of each individual human life is the moment of fertilisation, one exception being when technology is used to create an embryo as a clone of another person.

From that point on, human beings are entitled to respect proper to their human nature, to protection from harm, and to rights appropriate to their stage of development.

The right to life is the most fundamental human right of all, and is applicable to all human beings, whatever their age.

People with disabilities, whatever their age and however severe the disabling condition, have an equal and unequivocal right to life and to protection from harm.

PGD fails to respect the human value of the embryos examined in the laboratory, because the aim in doing so is to destroy those found to have disabilities. The process of "testing" embryos to decide whether they will be allowed to live or thrown away as "substandard" is a denial of the respect due to human individuals and is compounded by destroying those with disabilities.

PGD is completely incompatible with a respect for the right to life, because it entails destroying human beings who do not measure up to an arbitrary measure of "desirability."

The Consultation Document on PGD prepared by the Human Fertilisation and Embryology Authority and the Advisory Committee on Genetic Testing stated that:

"The Human Fertilisation and Embryology Act was designed to ensure that human embryos are not used frivolously or unnecessarily, and was guided by the principle that respect is due to human life at all stages of its development." (para. 51)

It is true that "respect" is due to human beings at all stages of development. However, one cannot be said to be treating "with respect" embryos that are "used" for any purpose. "Respect" towards embryos is not compatible with testing and then destroying them if they do not measure up to a particular specification.

Real respect means recognising the value of the individual and taking steps to protect him or her from harm.

No safeguards could be adequate, because PGD depends on the concept that it is acceptable to destroy certain human beings.

10. What is SPUC's view on PGD?
• It is never acceptable to reject - indeed, deliberately to seek out and destroy - those human beings who have disabling conditions.
• It is impossible for a society to "value" a group of individuals while also allowing their destruction.
• We can only acknowledge and demonstrate the equal value and dignity of every human being by welcoming into our society every child, disabled or not.
• PGD denies the human value of the embryos who are tested and selected for destruction because they have or carry a disability. PGD is never ethically acceptable.
• PGD involves the destruction of human beings at the earliest stage of development.

1 Human Fertilisation and Embryology Authority Eighth Annual Report and Accounts 1999
2 HFEA & ACGT Consultation Document on Preimplantation Genetic Diagnosis para. 22. 1999
3 Down's but not out by Tom Shakespeare The Guardian 5th November 1998
4 Mass genetic testing of pregnant women on way by Rachel Sylvester The Daily Telegraph 11th March 2000

Alison Davis 7/01. Published by 'No Less Human' a division of The Society for the Protection of Unborn Children, 5/6 St. Matthew St. Westminster. London SW1P 2JP
SPUC Scotland Paper 6
Designer Babies
Revised June 2002

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