Birth of an ethical dilemma

By Chris Barton

Asperger's Syndrome NZ said it would pave the way to genocide. Otago University's Professor Donald Evans said it would wind the social clock back in New Zealand by at least a generation and a half.

DPA NZ described it as a muddle-up that made disabled people feel really unsafe. For the Catholic Church, it crossed a boundary and marginalised the unborn. And world-renowned human reproduction expert and BBC documentary star Lord Robert Winston couldn't see why people were getting so worked up.

They were all talking about the Bioethics Council's Who gets born? report. What had got many of them going was the council's recommendation that since we have the technology, parents, if they wished, ought to be able to choose the sex of their kids.

The culprit in the furore stems from in vitro fertilisation (IVF), the 1978 miracle of modern medicine that enabled embryos to be created outside the womb. Fast forward to the late 1990s and IVF combines with preimplantation genetic diagnosis (PGD). Test tube babies can now be genetically screened - as embryos just a few days old - for certain conditions and illnesses, plus whether they are male or female.

Yes, we do have the technology. But PGD is not going to be everyone's cup of tea. It's invasive and expensive, costing around $11,000. The report on the "cultural, ethical and spiritual aspects of pre-birth testing" does, however, raise big questions about how and when this medical technology should be used.

The council's role is to engage with such debates, consult with the public, report back to government on what it finds and suggest what direction it thinks laws relating to these matters should take. The following three scenarios outline some of the deliberations and ethical minefields canvassed.

SCENARIO 1
The parents of a family with three boys and one girl lose their daughter in a car crash. They decide to have another child and wish for a girl. To fulfil their wish the mother undergoes IVF with PGD. Four embryos result - three male and one female. The female embryo is implanted and the mother gives birth to a healthy baby girl. The parents instruct the IVF clinic that the remaining three male embryos should be stored.

At present this scenario is illegal in New Zealand. Sex selection for social reasons - such as providing gender balance to a family - is prohibited under our Human Assisted Reproductive Technology (HART) Act 2004. Offenders are liable to imprisonment for up to a year or a fine up to $100,000. It is, however, allowed in other countries including the United States.

Sex selection is abhorrent to groups like Asperger's Syndrome NZ because it opens the possibility of selecting against having boys - on the basis that Asperger's is more prevalent in males. For Donald Evans, director of Otago University's Bioethics Centre, sex selection should remain prohibited because it opens up the possibility of discrimination against women and may undo decades of work in gender equality.

Martin Wilkinson, chair of the Bioethics Council disagrees: "If people do it, it's unlikely they'll do it because they have a great commitment to the male or the female sex, it's because they'd like a boy instead of a girl because they've got loads of girls or they'd like a girl because they've got loads of boys."

He says the council came to its conclusion because it couldn't see any good reason for a coercive law that interferes with something as fundamental as parent's decisions about reproduction.

Wilkinson says the council found no appetite from the people it spoke to that sex selection, unlike some other types of PGD, should be provided free by the government. In a sense, that put sex selection into the category of a luxury service.

If sex selection is not important enough to be provided free for everybody, Wilkinson says it's difficult to argue that PGD should be withheld from everyone because some can't afford it.

SCENARIO 2
The parents of a 3-year-old girl suffering from leukaemia find that, despite treatment, the prognosis for their daughter is not good. Using IVF and PGD the mother has another baby "tissue-matched" to her sick child. Doctors successfully transplant compatible umbilical cord blood cells from the newborn baby into the sick child who then recovers from of her life-threatening disease.

This scenario also can't happen here, but does occur elsewhere. The benefits of umbilical cord blood are also very real - just look at the thousands of parents who have stored their baby's cord blood (at a cost of $2,500 plus an annual storage fee of $200) at Auckland's CordBank facility.

Last year one CordBank family successfully transfused their child's cord blood (containing stem cells) at Auckland's Starship hospital to help the child's immune system recover after chemotherapy for a neuroblastoma.

Part owner of CordBank, Jenni Raynish, says two other families are currently seeking treatment in America for their children's birth related brain injuries. In the case of brain trauma (including cerebral palsy) the stem cells contained in cord blood have shown remarkable regenerative benefits. Raynish said discussions are also underway for two families who want to participate in a trial in Florida which is using cord blood to treat Type 1 diabetes.

But the problem with our HART Act is that while it allows saviour siblings, under the oversight of the Ethics Committee on Assisted Reproductive Technology (ECART), they're only permitted to alleviate an inherited disorder.

The council's report highlights the discrepancy in the law, saying if it's OK to help a sick sibling for an inherited disorder such as the blood disease Beta Thalassemia, it should be OK for other types of serious disorders.

Having negotiated their way through ECART approval, parents face another hurdle in New Zealand - getting dispensation from the Minister of Health to use the cord blood for a sibling. Currently our Human Tissue Act only allows autologous use of cord blood - for the use of child from which it came.

Concerns about saviour siblings centre on the rights of the donor child - particularly when more invasive procedures such as bone marrow transplants are involved. Issues of informed consent arise and lead to questions about whether the child might become regarded as something akin to a spare parts factory. The council recommends more research to ensure the rights of children in these circumstances are fully protected.

SCENARIO 3
A woman who is aware she has genes that are linked with a high chance of getting breast and ovarian cancer wants to have children. She opts to conceive using IVF and screens out the problem BRCA genes. Remaining embryos carrying the BRCA genes are discarded.

While it seems this scenario is legal in New Zealand, mothers would have to travel to an IVF clinic in Australia because the service isn't currently offered here. The problem with using PGD for diseases like these is that they are "late onset" conditions.

The concern is that the person may have a good life until the disease occurs and by then a treatment may be available. There's also the problem of the disease being "low penetrance" - that while someone may have genetic susceptibility to breast cancer, that's not a guarantee the disease will actually develop.

The issue raises questions about which types of PGD should be funded. At the moment the Ministry of Health funds 40 cycles of IVF/PGD a year to detect serious inheritable genetic diseases. Fertility Associates Dr Mary Birdsall says the current funding is failing to meet demand.

"It's inadequate in that couples need to wait for more than a year in order to get their cycle of PGD." She says couples seeking to select out Huntington's Chorea, Cystic Fibrosis and Spinal Muscular Atrophy are the most common uses of PGD here.

Others include cases of chromosomal translocation which cause frequent miscarriages. There are also older mothers, or mothers who have previously had Down Syndrome babies, who use preimplantation genetic screening (PGS) which looks at chromosomes rather than genes.

Birdsall says while PGS technology isn't perfect, it is beneficial to some women who don't wish to face the difficult decision of whether to terminate a pregnancy if a Down Syndrome baby is detected during pre-natal testing.

She says the long waiting list for PGD puts added stress on couples choosing not to conceive naturally so they can avoid having a child with an inherited disease.

Delays of a year or more - if during the IVF PGD cycle the couple finds there are no suitable embryos to replace - also mean less chance of success because of the impact of the mother's age on egg quality.

The council argues that our existing laws are broad enough to include late onset and low penetrance conditions for PGD and that it should stay that way. Critics say opening up PGD to such a wide scope paves the way for all manner of "designer babies" and is another step down the "slippery slope" toward eugenics. Disabled people are particularly worried such moves reinforce the view that their lives have a lesser value, and are poorly protected.

Others argue that PGD involves "playing God" or that it interferes with the natural order. Then there are complex arguments about the moral status of the embryo.

From a Catholic perspective all embryos, even those with genetic abnormalities have as much right to exist and be selected as those free of genetic abnormalities.

Professor Mark Henaghan, dean of faculty law Otago University and member of ACART, says it's worth noting that all uses of preimplantation are a form of discrimination. "If you choose an embryo that doesn't have a certain gene, you're discriminating against that defect. It's really a question of whether you think there is any great harm in doing that."

Henaghan says Iin most cases PGD involves a positive rather than a negative discrimination. The test, he says, is whether you can show actual harm resulting from PGD. If there's not, then it's hard to argue against the freedom of parents to make their own choices.

PANEL OF SPECIALISTS

The Bioethics Council was set up in 2002. It was created after the Royal Commission on Genetic Modification reported public concern that decision-making was not adequately addressing the ethical, cultural and spiritual dimensions of genetic modification and biotechnology.

Its members are:

* Associate Professor Martin Wilkinson, a specialist in community health and philosophy at the Auckland School of Medicine, chairs the council;

* Dr Helen Bichan, Wellington, has qualifications in psychological medicine and public health;* Dr Waiora Port, (Te Aupouri [Ngati Pinaki], Te Rarawa [Ngati Maroki]), Auckland, a respected kuia with long-standing community knowledge of Maori health issues;

* Brett Stephenson, (Te Kapotai and Ngati Wai), senior lecturer in Environment Science at Te Whare Wananga o Awanuiarangi in Whakatane; * Dr Marie Bismark, Wellington, a lawyer who specialises in health law and patients rights;* Dr Mark Fisher, Hastings, a scientist with experience in farm animal reproduction and animal welfare;

* Dr Peggy Fairbairn-Dunlop, the inaugural Director of Va'aomanu Pasifika at Victoria University of Wellington;

* Associate Professor Rosemary Du Plessis, a sociologist at the University of Canterbury; * Tahu Potiki, (Kaati Moki, Kaai Te Ruahikihiki), Dunedin, former Chief Executive of Te Runanga o Ngai Tahu;

* Dr Huia Tomlins-Jahnke, (Kahungunu, Ngai Tahu, Ngati Toa Rangatira and Ngati Hine), Palmerston North, an associate professor of Maori education at Massey University.

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