GESTIÓN EN SALUD PÚBLICA: Genetic diagnosis should be a government priority

domingo, 17 de abril de 2016

Genetic diagnosis should be a government priority – Savulescu

Genetic diagnosis should be a government priority: Savulescu

by Xavier Symons | 16 Apr 2016 |

Julian Savulescu, together with Monash IVF stakeholder Kelton Tremellen, has called on the Australian government to subsidise preimplantation genetic diagnosis, arguing that genetic screening is in the interests both of children and of future generations. In an article that forms part of The Conversation’s series on ‘big ideas’ for the 2016 Australian federal election, Savulescu and Tremellen list what they see as strong reasons to fund genetic testing for prospective IVF parents.

Savulescu and Tremellen suggest that, insofar as we “count the value of the life of a child produced by IVF as a benefit”, it is very cost effective to screen children for congenital conditions like cystic fibrosis.

“While the Australian government does pick up the tab for the majority of IVF costs, it pays absolutely nothing towards the costs of genetic testing, which are borne by the prospective parents. This appears to be a strange position when one considers the costs associated with care for a child born with cystic fibrosis, estimated to be over A$30,000 a year.”

They also suggest that there are ‘impersonal reasons’ that count in favour of government subsidies for prenatal genetic diagnosis:

“…we also feel intuitively that a world without cystic fibrosis is a better world… Sometimes these reasons are called “impersonal reasons”, reasons that are unconnected to harm and benefit to persons… The implication of this for IVF and genetic selection is that we have some direct impersonal reasons to support these.”

Savulescu and Tremellen conclude their article with suggestion that it would be in the government’s interest to support genetic testing for “non-disease traits”:

“These arguments suggest much more funding should be put into IVF and genetic selection to avoid serious disease. But they also extend to other non-disease traits. It is better if people have talents and gifts, are happy, co-operative, empathetic, altruistic and so on… Genetic selection should be supported to have children who will have better lives, not merely healthier lives. It ought to be a priority.”

The argument advanced in the article reflects Savulescu’s general bioethical theory of procreative beneficence – the view that parents have an ethical duty wherever possible to bring into existence healthy children.

- See more at: http://www.bioedge.org/bioethics/genetic-diagnosis-should-be-a-government-priority-savulescu/11838#sthash.kul4Agdp.dpuf

Former Austraiian Prime Minister Bob Hawke, who is now 86, has publicly backed euthanasia, even for teenagers. He says that he fears the indignity of "losing his marbles" -- something he is trying to keep at bay with crosswords and suduko. He told euthanasia activist Andrew Denton that his second wife, Blanche d'Alpuget, will know what to do if he ever reaches that stage.

Acting as a poster boy for euthanasia is a sad end to a distinguished career. But it is, in a way, understandable. Dementia must be terrifying for people without adequate family support because of fractured relationships. And Mr Hawke, sadly, fractured his in a very public way by divorcing his first wife Hazel, who had been his spouse when he was Prime Minister, to marry his biographer, Ms d'Alpuget.

Hazel went on to be one of the most respected and best-loved women in public life in Australia. People praised her honesty and courage when she admitted that she had been diagnosed with Alzheimer's disease. She even published a book about it. Eventually she had to enter a nursing home where she lived for four years before her death. Mr Hawke was not there to help her.

For all of his intelligence and charm, Bob Hawke is wrong about euthanasia. Dementia is a disability and a civilised society does not solve the problem of disability by killing the disabled. The real indignity comes when the "abled" neglect their responsibility to care for the weak and vulnerable