domingo, 2 de diciembre de 2018

BioEdge: Architects of Victoria’s right-to-die law publish ‘manual’ on how to push legislation through

BioEdge: Architects of Victoria’s right-to-die law publish ‘manual’ on how to push legislation through


Architects of Victoria’s right-to-die law publish ‘manual’ on how to push legislation through
The Victorian Parliament by night  
One year ago, in December 2017, the Australian state of Victoria legalised euthanasia and assisted suicide. This has given new heart to supporters in other states who have been lobbying for years for the “right-to-die”.
Helpfully, the Australian Healthcare Review has just published a review of how supporters were able to break the log-jam in Victoria – essentially a how-to manual for activists written by the government’s former Ministerial Advisory Panel, the brains trust for the process.
Here are a few of the elements which the authors highlight in their article.
1. Victoria passed a Charter of Human Rights in 2006. Its emphasis on autonomy helped to enable passage of a law decriminalising abortion in 2008 and then last year’s euthanasia legislation.
2. Victoria’s Labor government, headed by Premier Daniel Andrews, supported the legislation, although it was eventually decided on a conscience vote. A report from the parliament’s Legal and Social Issues Committee endorsed it. “Government support was essential,” report the authors.
3. As members of its Ministerial Advisory Panel (MAP), the government appointed seven men and women with distinguished professional qualifications, all supporters of a change in the law. The chair, Brian Owler, was a former federal president of the Australian Medical Association.
4. The MAP had extensive discussions with stakeholders in legalised euthanasia, such as health professionals and administrators, legal groups, medical colleges, nursing and allied health groups, consumer and carer groups and mental health providers. Consultative workshops were held throughout Victoria.
5. The support of the Department of Health and Human Services was essential to the process. It provided expert legal and political advice, and administrative support. The Health Minister dedicated “significant departmental resources required, for the process of consultation to develop a high-quality bill.”
6. Skilful media management ensured that messaging was “consistent and accurate”. The members of the MAP were given media training. Journalists were given extensive briefings at each major step “to ensure that the public messaging of a complex model containing strict criteria was clear and that the work was reported accurately. In addition, different lobby groups undertook public campaigns to engage the media and the general public, as well as to directly lobby politicians, which was helpful in balancing the differing arguments.”
The authors conclude that “This process has been a tangible example of democracy at work at a time when many may feel cynical about political processes.”
It would be interesting to read an account of how the legislation passed from the point of view of its opponents.

Sunday, December 2, 2018

Many scientists were aghast this week when a Chinese expert in CRISPR, He Jiankui, announced the birth of gene-edited twins – probably the world’s first “designer babies”.

Dr He is being described as a “rogue scientist” who ignored the rules. But that is the way that whole field of reproductive technology has advanced. Bob Edwards, who won the Nobel Prize in Medicine for developing IVF, never sought ethics approvals or worried about the safety of the children.

In fact, he was an unashamed eugenicist. As Edwards said in 1999: “Soon it will be a sin for parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children.” Edwards did not even seem to worry about the higher rate of birth defects among IVF children. They were just collateral damage of the “clinical imperative”.

Yet now Bob Edwards is regarded as a hero -- because his risky experiment worked.

I think that it is a bit unfair to label Dr He as a rogue. In fact, his robe-tearing, scandalised colleagues agree that editing the human genome is ethical. They are just worried that he did not tick all the boxes and do all the paperwork. This is very bad public relations for them and for the Chinese government.

In fact, given the deteriorating place of human rights in China at the moment, He Jiankui will be lucky to escape a long prison term -- or even execution – to regild the government’s tarnished image as a watchdog of uber-ethical science.

Michael Cook
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