Human Tissue Act 1964 Discussion Document
I wish to clear up some misconceptions surrounding the recent release of the 'discussion document' from the Ministry of Health. The media have only picked up part of the document and put too much weight on it. i.e. presumed consent with regard to organ donation. I must stress that as this is a 'discussion document' it only puts presumed consent up there with other options, to be discussed...
Presumed consent VS informed consent is a whole different, very complex argument and I would recommend people read the discussion document and balance the presumed consent option with the other available options.
My main concern that led me to send out a press release over the weekend was about the availability of the discussion document to ordinary New Zealanders, as opposed to the merits of the contents.
The MOH have spent the past two years putting this document together, and they say that everyday New Zealanders can have their say in the direction that legislation will go in regards to many issues that affect 'our' bodies.
There are some major issues involved in this discussion document that will affect every single New Zealander, i.e. what will happen to your body after you die? The transplanting of animal organs into humans etc.
I would imagine that most New Zealanders would like to have a say in these matters, but in reality will not be able to.
Even though it is supposed to be a 'public consultation discussion document' the MOH have released it in a very low key way so that most people in New Zealand would not even be aware of it's release. The MOH counter this with the pathetic excuse that it is available on their website. How many people do you know go to the Ministry of Health website everyday and trawl through it's contents to see what's new?
Other 'cop outs' include a Ministry spokesperson saying in the media today that the document was posted out to 'interested parties.' That means it was mainly posted out to medical professionals and drug companies.
As they are the only people aware of this document it means the submissions in regard to it will mean that it will be biased in their favour and will not be a true reflection of the wishes of the general public of this country.
Other areas about the document release that concern us are:
a.. As an 'interested party' I received a copy of the 140 page document just a few days ago. At the back of the booklet is a form to register to go the public meetings and make a submission. The registration ends tomorrow! (Tuesday 14 April) With the timing of the release around Easter Holidays, even those who are 'interested parties' possible being away will not be able to register in time.
b.. Even if you manage to register in time, you only have two weeks before the meeting to write up your submissions. The MOH gets Two Years to write the questions, we get two weeks to write the answers!
c.. Even if the MOH publicized widely the release of the document, again most people wouldn't have a clue what it is about and would ignore it. It was released as - "Review of the Regulation of Human Tissue and Tissue-based Therapies Discussion Document." It should have be publicized in 'Layman's Terms' i.e. "What do you want to have happen to your body after you are dead? Are you for or against having animal organs transplanted into humans? here is your chance to have your say." (document)
d.. The MOH spokesperson in the media also said "There would be a second opportunity for public consultation when the proposed legislation went before the health select committee." This is another 'cop out' as the proposed legislation would have already been proposed and put forward to the select committee as the preferred option based on the submissions received (by 99% of the medical profession only). An everyday member of the public would be more than happy to put their opinions forward in a discussion document. But would they be prepared to travel to Wellington (at their own costs for travel and accommodation - as select committees do not pay expenses) and attend a select committee to try and 'reverse' a proposal that has already been put forward?
e.. If new laws regarding organ donation (and other issues) are passed and the general public are not happy with it, the government will turn around and say, "well you had your opportunity to have your say during the consultation phase" I think most people will respond with, "What, when was that? I didn't see that!"
f.. Though my fight with the government has been on organ donation for the past two years, this is not about this issue, it's about the right of 'the people of New Zealand' to have an input whatever their views on organ donation are. Presently the submissions will be biased in favour of the doctors and drug companies. This is not democratic...