Genetics - drawing the line

As scientists predict the possibility of cloned babies within months, New Zealand is still wrestling with the question of how far we should go with genetic technology. SIMON COLLINS reports.


"Playing God" is an accusation that geneticists like Auckland University's Dr Ingrid Winship have had to think about for years before human cloning became an imminent reality.

Unlike Italy's Dr Severino Antinori, Dr Winship is not threatening to create new human beings.

But her genetic testing of babies in their mother's wombs and independent adults is creating ethical dilemmas which society is only starting to understand.

The issues are about to come before Parliament via two bills before the health select committee.

The Human Assisted Reproductive Technology Bill, introduced in 1996 by Hamilton Labour MP Dianne Yates, would license fertility clinics and ban genetic screening, human cloning and the sale of sperm or embryos.

A similarly named Assisted Human Reproduction Bill, introduced by former Justice Minister Sir Douglas Graham in 1998, would also ban cloning and the sale of sperm and embryos, and would give control of fertility procedures to a national ethics committee. But it would allow genetic testing.

Government officials are updating the bills to cover the latest technology, including the ability to transplant "stem cells" taken from human embryos in the first two weeks after conception, when the cells are undefined and still have the potential to grow into brains or kidneys or any other part of the body.

Scientists believe that such "pluripotent" cells, transplanted into people with serious health problems, could grow into new tissues to relieve Parkinson's and Alzheimer's diseases, diabetes, heart damage and serious burns.

On Friday, United States President George W. Bush approved federal funding of research using particular stem cells which have already been taken from the embryos of 60 women in six countries.

Mr Bush refused to approve federal funds for taking new stem cells from other embryos, because the process means that those embryos could never develop into human beings. Morally, many people see taking stem cells from embryos as just an early form of abortion.

However, Britain allows researchers to take stem cells from embryos. Lord Robert Winston, who chaired the science committee in the House of Lords, said in Auckland last week that embryos were not morally equivalent to human beings because 90 per cent of them never developed into foetuses anyway.

Attorney-General Margaret Wilson, who is in charge of the new legislation here, says the cabinet is now wrestling with the issues and a decision will be made by the end of the month.

The issues span a whole spectrum of new scientific possibilities, from merely testing foetuses for genetic defects, through stem cell transplants and selecting embryos for "positive" features such as intelligence and appearance, to cloning whole human beings.

Scientists can explain how the new techniques work. But ultimately, where to draw the legal line on this spectrum is an ethical issue which will be decided by MPs on behalf of all New Zealanders.

For the bulk of Dr Winship's work in the genetic clinic at Auckland Hospital, there is no issue. She tests people to see if they have a family genetic predisposition to certain kinds of cancer, as 300 New Zealand families are predisposed to bowel cancer and 400 are liable to get breast cancer. For them, she recommends regular physical checkups of their bowels or breasts.

But she also offers blood tests to pregnant women at 11 weeks or 15 weeks to see whether their babies have Down Syndrome or other genetic disorders. Such tests are available on the public health for all pregnant women over 35, and Dr Richard Fisher of Fertility Associates says 70 per cent of such women have the tests.

"Eighty per cent of the embryos in women at the age of 37 are abnormal. By the time you get to 42, 90 or 95 per cent of the embryos will be abnormal," Dr Fisher says.

Most such embryos never develop into foetuses. But if they do, and parents find at 11 or 15 weeks that they face having a deformed baby, most choose to abort. As a result, the number of babies born with Down Syndrome, spina bifida and other disorders has dropped dramatically.

Dr Winship insists this is not "playing God".

"The underpinning philosophy is pro-choice. If technologies exist in practice, we have no right to impose them or withhold them."

Even the Green Party, which has led the fight against genetic modification, supports such testing.

"I totally support genetic testing as long as it's not misused," says Green MP Sue Kedgley.

But anti-abortion groups are alarmed. Bernard Moran of the Society for the Protection of the Unborn Child (Spuc) says the tests are not foolproof, citing parents who chose to have their babies naturally despite being told they had defects - and then were delighted when the babies turned out not to have disabilities after all.

The former Disabled Persons Assembly, now called just DPA, believes that mandatory testing of foetuses or embryos for genetic defects leads to viewing people with disabilities as less than "normal".

It quotes Nobel peace laureate Oscar Sanchez Arias: "For equality to exist, we must avoid standards that define what the 'normal' human life should be ... The only 'normal' quality that can exist among human beings is life itself."

At first glance, stem cell transplants seem like an easier issue - harder to see as a form of abortion, because the stem cells are taken from embryos which have been created artificially in fertility clinic test tubes.

If not used for research, these embryos may be frozen for a few years in case couples want more children, but then they will be destroyed anyway.

What harm can it do to take a few for research - especially when that research has the potential to relieve Parkinson's disease, Alzheimer's and other debilitating conditions?

On this basis, many anti-abortion members of the United States Congress support stem cell transplants.

National Party associate health spokesman Dr Paul Hutchison, a former chairman of North Shore Fertility, says stem cell research has "great potential for alleviating suffering".

"In nature, both eggs and sperm are being destroyed every day spontaneously, as are early embryos," he says.

"So if there is overwhelming evidence that humankind can benefit from embryonic stem cells, then to prohibit that is going to deny help to individuals with some pretty awful diseases and seems to me to be wrong."

However, Spuc's Mr Moran believes that any deliberate destruction of embryos must be opposed on principle. Even the tiniest embryo already carries the full genetic imprint of a human individual.

"It's a person, it's a someone, and however small, you don't dispose of it," he says.

"If you depart from that, if you allow just a little bit ... Bush is talking about 60 stem cell lines, so why not 600, why not 6000? You can't allow just a little bit of death."

Mr Moran says it is possible to take stem cells from adults without the need to destroy embryos.

Dianne Yates also suggests that stem cells should be taken only from adults, even though the "multipotent" potential of adult cells is much more narrowly defined than the "pluripotent" cells in early embryos.

At this stage, few are prepared to go further and allow selection of embryos for intelligence, strength or general health - assuming that scientists may soon find out which genes determine such things, which at present is unknown.

"The repercussions of allowing us to come up with designer babies with cranked-up IQ or whatever - you would be on the slippery path to eugenics," says Sue Kedgley.

Dianne Yates agrees: "I come to it from a radical feminist perspective, which says women are not just there as 'rent-a-womb' gestational mothers or egg producers.

"I don't think science should be used for frivolous or cosmetic reasons - just because I want a baby with black hair and brown eyes rather than blond hair and blue eyes."

And at the extreme, no one contacted for this article would allow cloning of whole human beings as Dr Antinori proposes.

Quite apart from "Brave New World" implications, cloning at this stage of our knowledge involves a huge risk of deformed children: Scottish scientists produced 277 sheep clones before one, named "Dolly", came out normal.

Alliance MP Phillida Bunkle, who founded Fertility Action in the 1980s, says that rather than giving priority to any of these high-tech solutions, we should tackle the environmental factors which spawn illness and have caused a dramatic drop in human fertility in the past 20 years.

She points to "an epidemic of endometriosis" - a womb disorder which is usually treated by removing the womb.

Both this and declining male sperm counts have been linked to factors such as the breakdown of plastics in the environment and dioxin from bleached tampons.

Other factors are believed to be eating disorders such as anorexia and obesity, and a huge increase in the venereal disease chlamydia, which is now the leading cause of tubal infertility.

"Protecting fertility is protecting something very precious. That is the core of women's health. We don't do it," Ms Bunkle says.

"Instead, we fiddle around with ultra-high-tech, glammed-up interventions costing millions of dollars because they are scientifically exciting, not because they really solve problems."

* The Independent Biotechnology Advisory Council, of which Dr Winship is a member, has published a discussion paper on Cloning and Stem Cell Research, available on the IBAC website or from IBAC at PO Box 530, Wellington, phone 0800 504 222. It will publish a paper on genetic testing in October.

Feature: Cloning humans

Professor Severino Antinori

Human Cloning Foundation

bioethics.net

Religious Tolerance looks at cloning