Labour hopeful warns test smacks of eugenics

A Labour list candidate who will help to judge proposals to genetically test unborn embryos has warned that the test risks unleashing a modern form of "eugenics".

Eamon Daly, a Christchurch tetraplegic who has been appointed to the new Ethics Committee on Assisted Reproductive Technology, told a forum on disability and public life in Auckland on Saturday that many disabled people were worried about the new test.

"It potentially allows a eugenics movement to come forward - eugenics being the systematic elimination of potential traits in the human genome," he said.

"That would mean we could have people with cystic fibrosis, Down syndrome and so on eliminated from the human condition.

"A lot of people disagree with this because people who live with these impairments create a diversity within human culture that is necessary for us to go forward and progress."

Mr Daly, who is ranked 66th on the Labour list, said later that he was "open-minded" on the issue and merely wanted to raise the question.

But his warning of "eugenics" harks back to Nazi plans to "purify" the German race in the 1930s by exterminating Jews and other "non-Aryan" people.

A director of Auckland's Fertility Associates, Dr Richard Fisher, said the rules for the new test - technically called pre-implantation genetic diagnosis (PGD) - were "reasonably restrictive". But he acknowledged that some disabled people might have concerns.

"There are some within the disabled groups who still won't like that because of what it says about 'my child'," he said.

"There are probably equal numbers in those groups who would say, 'It says nothing about my child - only that, having had a child with [a disability] once, we don't want to do it again'."

The guidelines, approved by Health Minister Annette King in March, permit embryo tests for disorders that affect a single gene and run in families, such as cystic fibrosis and Huntington's disease, where there is at least a 25 per cent risk that the embryo will have the disorder.

Dr Fisher said about 30 New Zealand couples a year would take the test for these disorders, after "a bulge at the beginning because there are a lot of people waiting".

He expected a further 20 or 30 couples each year to seek the test under a separate clause covering disorders that are more common in mothers over 40, such as Down syndrome.

A third category - using the test to match the tissue type of an older brother or sister who needs a tissue transplant - will need to be approved by the new ethics committee case by case. Dr Fisher expects only "a very small number" of these and is not aware of any couple waiting for a test for this purpose.

Mrs King is expected to announce Government funding for the new tests at a Fertility Society of Australia conference in Christchurch next Saturday. But mothers over 40 do not get funding for in-vitro fertilisation now and are likely to have to keep paying under the new regime.

Mr Daly, 36, is also a member of the Bioethics Council and the Human Rights Review Tribunal. He told the weekend forum at the newly renovated Western Springs Garden Hall that he supported the plan for the new ethics committee to consider cases one by one "so there is not a principle that says every couple that wants to have PGD to eliminate Down syndrome can do so".

The ethics committee, which will meet formally for the first time on September 13, will be chaired by Auckland lawyer Philippa Cunningham.

Embryo tests

* Many pregnant women already get pre-birth tests for genetic disorders and may choose an abortion if the baby is likely to be seriously disabled.

* "Test-tube baby" technology offers the chance to pick up abnormalities in an embryo before it is inserted into the mother's womb, avoiding the worst trauma of abortion.

* Tests for these abnormalities were approved in March and are due to start in the next few months.

* But the tests raise a new question about how people with disabilities such as cystic fibrosis will feel if those disabilities are eliminated from now on.