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Tuesday, November 16, 1999 Published at 05:21 GMT


Health

Gene screening debate goes public

IVF experts can weed out embryos at high risk of genetic defects

People are to be asked whether potentially defective embryos should be weeded out from IVF treatments using new gene techniques.


Ruth Deech: "It is important to consult the public"
The Human Fertilisation and Embryology Authority (HFEA) and Advisory Committee on Genetic Testing (ACGT) will launch a major public consultation exercise on Tuesday.

They want the public's views on whether, and how, genetic screening techniques should be used to help couples with serious genetic disorders in their families have healthy children.


[ image: Sperm carry genetic information]
Sperm carry genetic information
Modern technology could potentially be used to eradicate many of these diseases in the long term.

However, the HFEA has stressed that it will not re-consider its ban on using the technology to enable parents to make choices about their children on social grounds.

Pre-implantation Genetic Diagnosis (PGD) is currently used to detect whether an embryo created in the test tube is carrying a genetic defect that will give rise to an inherited genetic disorder, such as cystic fibrosis.

It can also be used to determine the sex of an embryo in cases where a family is at risk of passing on a serious sex-linked disorder, such as muscular dystrophy, to a male child.

Peace of mind


[ image:  ]
Many of the tests used in PGD are not new and are currently used in prenatal diagnostic tests such as amniocentesis or chorionic villus sampling.

But PGD may also offer some couples greater reproductive choice, enabling them to begin a pregnancy knowing that only unaffected embryos have been transferred.

HFEA chairman Ruth Deech said: "New scientific and medical advances, especially in the field of genetics, often cause public unease and present us with complex social, ethical and regulatory questions. We feel it is time the public had a say.

"The HFEA decided it would be unacceptable to allow PGD to be used to test for any social, physical or psychological characteristics, or any other conditions that are not associated with serious, often life-threatening, medical disorders."


The BBC's Fergus Walsh takes a look at the issues
The ACGT chairman, Reverend Dr John Polkinghorne, said: "Important issues are raised in this consultation relating to the use of PGD to help couples at risk of serious medical disorders of genetic origin in their families.

"We shall welcome the help that responses will give to us in the careful consideration of these important questions."

Four centres in the UK are currently licensed to carry out PGD and one more to carry out the embryo biopsy part of the procedure only.

Approximately 20 babies have been born following 200 PGD treatments in the UK.

PGD was first successfully used in 1990 to produce two sets of twin girls.

It is estimated that everybody carries one or two abnormal genes that could cause defects.

However, the defect will only appear if both parents carry the same abnormal gene.

Anti-abortion group concern

Anti-abortion pressure group Life said more efficient methods of detecting "defects" would "permit this country to proceed further along the road of callous discrimination".

Spokeswoman Angela Corless said: "The blatant truth is that this testing is done in order to search out and destroy less than able babies and so it is discrimination against disabled people before birth.

"Life opposes such discrimination before birth and after and urges all people of goodwill to oppose such discrimination too.

"Many people who have a disability lead autonomous and productive lives and are valued members of our society.

"It is not a disability that affords them a poor quality of life; it is the lack of care and concern that so-called civilised society shows them."



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Pre-implantation Genetic Diagnosis

Human Fertilisation and Embryology Authority (HFEA)

Advisory Committee on Genetic Testing (ACGT)


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