GESTIÓN EN SALUD PÚBLICA: BioEdge: Fertility tourism: Australians travelling to US to have ‘designer babies’

domingo, 9 de junio de 2019

BioEdge: Fertility tourism: Australians travelling to US to have ‘designer babies’

BioEdge: Fertility tourism: Australians travelling to US to have ‘designer babies’

Bioedge

Fertility tourism: Australians travelling to US to have ‘designer babies’

by Patrick Foong | 8 Jun 2019 |

Australian intended parents are spending A$20,000 to select the sex and eye colour of yet-to-be-born babies via with IVF at American fertility clinics. Blue is the favourite eye colour. Compared to headline features like high IQ, Olympic athletic ability or freedom from Alzheimer’s, these are modest product specs. But when all is said and done, these parents are still creating “designer babies”.

This is forbidden under Australian law. Unlike the United States, where the fertility industry is very lightly regulated, gender selection is banned throughout Australia. According to the Ethical Guidelines on the use of Assisted Reproductive Technology in Clinical Practice and Research 2017 (ART Guidelines), sex selection is only permitted for medical reasons, when a genetic disease is sex-related.

While these guidelines are not legally enforceable, Australian fertility clinics cannot practise without accreditation. And the Reproductive Techology Accreditation Centre (RTAC) Code of Practice requires fertility clinics to comply with the ART Guidelines.

In addition, in three states ie. Victoria, Western Australia and South Australia, legislation exists that bans using PGD for sex selection except in situations where the parents wish to avoid transmission of a sex-linked disease i.e. for medical reasons. But in New South Wales, there is no equivalent legislation. Therefore the ART guidelines apply and these guidelines have similar provisions.

So, as it currently stands, the law reflects a consensus in the community that parents should not “design” their offspring for cosmetic, competitive or lifestyle reasons. This reflects a long-standing concern about slippery slopes and a fear of reviving eugenics.

But this consensus may be changing. The Daily Mail Australia has reported that an American clinic, The Fertility Institutes, has helped 370 Australian couples to choose their child's sex, with 14 of them opting to choose the eye colour as well.

This is relatively small compared to claims by other clinics. Kolb Fertility Australia told The Age last year that it was sending 15 to 20 couples every month to an associated clinic in California. That amounts to hundreds every year. A California-based website called Gender Selection Australia is touting for business here. “Because gender selection for family balancing purposes is not legal in Australia, hundreds of Australian families each year are going overseas to choose the gender of their baby via IVF,” it says.

One needs to take such claims with a grain of salt. California fertility clinics are very competitive and could be exaggerating the popularity of their services in Australia. But clearly there is a demand for “designer babies”. How long will Australian law continue to ban them?

In 2017 there was a public consultation about non-medical sex selection. As a result the Australian Health Ethics Committee (AHEC) recommended that an existing ban should continue as there was no adequate support for a change in the ART Guidelines. However, it was not categorial. Here is the key passage:

“... in some circumstances, sex selection for non-medical purposes is consistent with the guiding principles … AHEC acknowledges that the motivations of those seeking to use sex selection for non-medical purposes cannot be easily identified. What is presented as a desire to introduce variety could conceal cultural and/ or personal biases. AHEC also recognises that many of the issues surrounding ART are as much social and political as they are ethical. With any controversial practice, society’s readiness to accept a practice is a relevant and important consideration. At the time of publication [2017], there is limited research into the question of whether Australians support the use of sex selection for non-medical purposes.”

This suggests both that AHEC has no in-principle objection to sex-selection and that that more studies will be done to assess whether the consensus has changed.

This means that pressure from “desperate” Australian couples or the precedent of changing legislation overseas could change AHEC’s mind on the matter.

On the first score, my assessment is that “designer babies” are still viewed with repugnance in Australia, even by a local media which is normally sympathetic to taboo-busting medical procedures. On the other hand, immigrant couples from China, Korea, India and other counries are well-known for their strong preferences for male offspring. If there is enough pressure to accommodate them, AHEC might recommend changes to its guidelines. This does not seem likely at the moment.

Like Australia, common law jurisdictions such as the United Kingdom, Canada and New Zealand ban sex selection except in situations where the parents wish to avoid transmission of a sex linked disease. Only a few jurisdictions in the United States permit it. But Australian legislators, who are often critical of the laisser-faire, commercially permissive ethos existing in the US, are unlikely to follow the lead of the “cowboys”.

So, putting on my horizon-scanning cap, I believe that there is little chance that Australia will legalise “designer babies” within the next five years. But as soon as social pressure builds up, we can expect a change.

Dr Patrick Foong is a law lecturer at Western Sydney University. His research interest lies in bioethics and health law

The news of a 17-year-old Dutch girl suffering from anorexia nervosa who died of 'euthanasia" flew around the world this week. It was an error. The Royal Dutch Medical Association (KNMG) clarified what happened: "She decided to stop eating and drinking to bring her own death. In The Netherlands, this is not considered euthanasia or physician assisted suicide." The media issued corrections and moved on.

I'm curious to know more about this sad story. In her autobiography, Noa said that she had been raped and that this had provoked a psychological crisis. Sadly, this could easily have been true. No one queried the truth of her story, possibly because sexual abuse is known to trigger anorexia. But without that back story, would the world have been so sympathetic to her decision to starve herself to death?

The KNMG says that stopping eating and drinking under medical supervision is not physician-assisted suicide. Really? She committed suicide and she was assisted by physicians. As Humpty Dumpty said, "When I use a word, it means just what I choose it to mean—neither more nor less." If Noa's death wasn't physician assisted suicide, then I'm a Dutchman.

Isn't the real news here something altogether different? Dutch doctors who were unable or unwilling to treat a 17-year-old rape victim for anorexia nervosa gave up on her and allowed her to kill herself. In her time of greatest need, they abandoned their patient.