Thursday, February 02, 2006

More from the Royal Society Alert 408 - Bioethics Council

Item #7: Xenotransplantation
The Bioethics Council carried out an examination of the cultural, ethical
and spiritual aspects of animal-to-human transplantation. In their report,
they described what they heard from New Zealanders about the subject and
also presented their own conclusions based on what they heard and made a
series of recommendations to Government. See
http://www.bioethics.org.nz/publications/xeno-final-report-aug05/index.html

Xeno. is where you mix 'human' genes with 'other' genes for medical purposes. For those of us without spiritual baggage the quote marks are entirely appropriate. Lets start with some easy ones:

3) Consistent with the framework chosen, decision-making bodies be guided
by national standards and have access to expertise. Both must be adequate
to deal with the special challenges of xenotransplantation - including its
cultural, ethical and spiritual dimensions.
So you're assuming a priori that there are cultural and spiritual dimensions to xenotransplantations? What are the spiritual dimensions of shampoo synthesis or IC chip manufacturing?

6) (a) The Minister for the Environment enables, including through the
provision of funding, an intra-cultural dialogue process (wananga) for
Maori to examine their knowledge base from which to engage with
xenotransplantation and other forms of biotechnology. This would address
tikanga and spiritual, ethical and cultural issues within te ao Maori,
including whakapapa, karakia etc
Why? Nobody asked me how the internet was going to impact my life when they were squirelling away in the CS dept at Auckland Uni. The words are different but it sounds like a nod to the religious aspects of Maori culture. If they wish to interpret it within their own paradigm, knock yourself out - it's not my job to do it for you.

Who are these people? From the introduction:
It is not our role to say whether or not xenotransplantation is safe or effective. This will be determined by the Government on the basis of advice from the Ministry of Health, reflecting the best available scientific evidence about the safety and effectiveness of xenotransplantation.

Safety is itself an ethical issue that requires people to question some of their most deeply held values. Is it wrong to do things that may carry a certain element of risk? To what extent does the presence of risk justify a curtailment of individual freedoms? As human beings, do we have a fundamental duty to respond to the suffering of others?

Moreover, there are other considerations beyond safety and its ethical aspects. As one participant in our online discussion forum said: ‘Even if science can demonstrate a good safety record, plus highly effective therapeutic outcomes, that in itself does not necessarily make xenotransplantation socially acceptable.’ (my emphasis)

One of the Bioethics Council’s key tasks is to engage with Māori and with Māori cultural, ethical and spiritual views, consistent with the Government’s commitment to the Treaty of Waitangi.
Hhhmmm, so based on a quick skim reading, it looks like this body of 'experts' exists to show appreciation for the Treaty of Waitangi wrt Xenotransplantation and discuss the wider aspects of what constitutes risk wrt the individual vs society (dialogue as a concept is so important it gets its own appendix).
Can't say i'm fussed about the ToW angle, so long as it constitutes consideration and not declaration. As for them telling me what risks should be allowed by an individual in advance, this clangs my liberty bell - who are they to tell me what constitutes risk? I would be much happier allowing things to exist and then let all of society choose what it decides, banning things in advance is always a slippery slope.

So who are these experts?
Jill White, Palmerston North, former MP
Dr Helen Bichan, Wellington, a medical practitioner with specialist qualifications in psychological medicine and public health
Eamon Daly, Christchurch, an independent researcher and PHD candidate in information technology ethics, and information privacy issues
Anne Dickinson, Wellington, Executive Officer of the New Zealand Catholic Bishops Conference and final chair of the disestablished Independent Biotechnology Advisory Council (IBAC).
Waiora Port, (Te Aupouri [Ngāti Pinaki], Te Rarawa [Ngāti Maroki]), Auckland, a respected Kuia with long-standing community knowledge of Māori health issues and a PhD candidate investigating the cultural and spiritual issues around DNA testing for Māori with a genetic predisposition to cancer.
Graham Robertson, Ashburton, a self-employed farmer and a former member of the Independent Biotechnology Advisory Council (IBAC).
Dr Martin Wilkinson, Auckland, a senior lecturer in Community Health and Philosophy at the Auckland School of Medicine.
Piri Sciascia has great depth and knowedge in Māori arts and culture as well as experience in high-level government process. Piri is Pro Vice-Chancellor Māori at Victoria University, Wellington.
Professor Christopher Cunningham has a doctorate in quantum chemistry. Chris is a Professor of Maori Health and Director of the Research Centre for Maori Health and Development at Massey University

A couple of doctors, a couple of PhD students, a professional religious person, and a guy with a great depth of experience of Maori art. I don't know what to make of Prof Cunningham, our resident quantum chemist but i'd love to hear how he ended up where he did! I can't say i'm inspired. Considering our census puts some 45% of the population as 'No Religion', i'd like to see some more transparency on where our bio-ethicists sit in relation to an absene of religion, are my (and approx. 2 million other Kiwis) viewpoint being considered?

From the FAQ:

How will the Council influence Government policy and decision-making?

By establishing confidence and trust in the way the Council operates and being seen to have moral authority based on the support of the New Zealand public for the role that it performs.

Shudder.... 'moral authority' is a term that should never by uttered let alone written down as a reason for your existence.
You have to love this as a media release:

Biotechnology decisions too important to leave to experts - Sir Paul Reeves

the rest of the speech didn't add much.

Enough. Begone ritous do-gooders. Stop trying to tell me what to do. Listen carefully, I'm going to type really slowly: I AM AN ADULT, I RATE MY OWN CHANCES OF MAKING THE RIGHT DECISION INFINITELY HIGHER THAN YOURS. LEAVE ME ALONE AND DESIST IN RESTRICTING THE OPTIONS I HAVE GOING INTO THE FUTURE. DO NOT UNDER ANY CIRCUMSTANCES ALLOW YOUR RELIGO-SPIRITUAL NOTIONS OF ETHICS TO DICTATE TO ME.

Good grief, it's sad to believe taxes pay for these people to sit around all day doing this....

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