Toi Te Taiao: The Bioethics Council meeting minutes - 19 June 2006

Held at the Centra, Auckland

Present

• Martin Wilkinson (Acting Chair)
• Eamon Daly
• Helen Bichan
• Simon Wright
• John Pennington
• Cordelia Thomas
• Piri Sciascia
• Waiora Port
• Chappie Te Kani.

Martin opened the meeting at 10 a.m. and welcomed Professor Richard Faull from the University of Auckland.

Karakia

Piri Sciascia gave a karakia.

Apologies

Graham Robertson, Chris Cunningham, Anne Dickinson, and Charlotte Severne.

Minutes of the Previous Meeting

The minutes of the meeting held on 17 May 2006 were confirmed as a true and correct record of the meeting on the motion of Martin Wilkinson, seconded Waiora Port, subject to the following amendments:

• Page 1, correct the spelling of Eamon’s name to “Daly”
• Page 4, before the introduction of the guest speaker note the departure of Helen and Eamon
• Page 5, replace text beneath the heading ‘Guidelines on the use of Human Tissue for future unspecified research’ with:

The Acting-Chair proposed that once the discussion document is available a working group be set up consisting of Cordelia, Martin, Graham, Eamon.

Actions:

• Establish a human tissue working group once the discussion document is available: Secretariat
• Delete duplicate references in actions
• Put the minutes, as amended, on the website - Secretariat

Matters Arising

Regarding the setting up of a working group on the Guidelines on the Use of Human Tissue for Future Unspecified Research – the working group would meet once the discussion document was issued. Cabinet had approved the guidelines for consultation sometime from July to mid October. Cordelia would be meeting this week with Ministry of Health and would get a more definite date then.

Action list

• Minutes of May meeting were corrected and placed on website.
• Prepare a contents page for the handbook of policies – Action: Secretariat
• The secretariat had met with Barbara Nicholas and Ian Hicks from the Ministry of Health to explain the work the Council had in mind in relation to the embryo project. They will inform ACART and arrange for ACART to meet with Martin and Charlotte at the July meeting .
• Reply to Sylvia Rumball– completed.
• World Congress in China – deferred. John to send out details of the meeting prior to the Congress in China.
• Contract negotiations with Mauriora-Ki-Te-Ao.
• Defer meeting with Steve Maharey.

Actions arising

• Prepare a contents page for the handbook of policies – Action: Secretariat
• Send out details of the meeting prior to the Congress in China- Action: John.

Acting Chair’s Report

The Acting Chair said that when work was to be done by the Secretariat that work needed to be left as an Action Point for the Secretariat rather than allocated to a specific secretariat member. Work would then be allocated by John to ensure the workload was balanced correctly.

From time to time Council members receive invitations to talk about the work of the Council. Part of the job of Council members was to respond to community requests for dialogue. It was agreed that this process needed to be planned and evaluated.

Presentation by Professor Richard Faull - “Embryos 101”

Martin introduced Professor Richard Faull of the University of Auckland, speaking on the biology of stem cells.

Professor Faull gave a presentation on human embryonic stem cells and adult stem cells in the context of research on conditions affecting the brain. He highlighted how evidence over the past few years had proved that the human brain still makes new brain cells (neurogenesis). Therefore, the human brain could repair itself just like all other organs in the human body. In the future, research needed to determine how to enhance and improve that repair process by stem cells and develop new treatments for patients. However, there was no question that adult stem cells were less versatile and less vigorous than embryonic ones. Adult stem cells did not proliferate in great numbers in the human brain, but there were still a lot of them present. To understand adult stem cells one needed to understand embryonic stem cells and so human embryonic research is vital.

“Blue Skies” Debate on Embryos

The Council members debated the decision making processes involved in using human embryos for research. This was followed by general discussion.

Report from Embryo Working Group

Cordelia outlined the relationship with ACART and the progress made by the working group.

The EWG are preparing a brochure about embryos. It is at the design and printing stage. It will be printed in English and Maori.

Charlotte will investigate options for holding wananga.

Action: Investigate options for holding wananga - Charlotte

The Talking Embryos seminar will be held on an evening in mid-late August for 2 to 3 hours. There will be about 4 speakers, giving balanced perspectives.  Sir Paul Reeves has been approached to be the chair. The secretariat will approach a speaker with a science background.

Action: Arrange Talking Embryos seminar - Secretariat

The EWG had agreed to get a web discussion going and the secretariat has met with moderator to get that under way.

Action: Negotiate contract for web discussion - Secretariat

The EWG was putting together a proposal for the focus groups and was contacting people to help with getting the various perspectives.

Work had been on the budget and project plan. Details about the wananga are needed.

Action: Cordelia to contact Charlotte regarding wananga - Cordelia/Charlotte

Action: Cordelia to circulate proposal for focus groups, then set a next meeting date. - Cordelia

Report from Tikanga Working Group

Chappie said that the TWG had dealt with two issues:

• It had met to discuss the Charles Royal contract and had decided to segment it.  One part was under way and further consideration would be given to whether we continue to the second. Charles would be doing a literature review and analysis, then that would come back to the TWG for consideration, and a decision on whether to proceed with the second section.
• The TWG discussed whether to support a joint proposal with ESR, GNS and Nga Pae O te Maramatanga Nga to FRST to pick up the MWG recommendation from the Xeno Report to enable intercultural dialogue process. Chappie said he would be seeking clarification of the proposal. John cautioned about any duplication in these processes.

Chappie reported that he and Waiora had attended the Matauranga Taketake: Traditional Knowledge 2006 Conference (Indigenous Indicators of Wellbeing: Perspectives, Practices, Solutions) held by the National Institute of Research Excellence for Maori Development and Advancement, and he distributed a report of discussions at the conference.

Action: Clarification of ESR, GNS and Nga Pae O te Maramatanga Nga proposal - Chappie

Discussion of Council Review

The Acting Chair said that in relation to the recommendations there were three questions: what did the Council think of what they were saying, did Council agree, and, if not, what should Council do about that.

One set of recommendations was about improving the uptake of the advice given by the Council. There were questions about Council’s relationship with stakeholders, and some points about the danger of workload and burnout of Council members, and about duplication and relationships with MfE.

There was a recommendation to set up an ad hoc group of Ministers, which was not the role of the BEC to arrange. There was another that the Chair and the CE of the Ministry liaise more closely than in the past.

As far as the practical changes are concerned, there seemed to be more things for the Chair – liaising with the CE and the Minister, meeting other Ministers.

John said that if the Secretariat was going implement the top–level recommendations  – i.e. to drive the implementation of Council’s recommendations more effectively –there needed to be consideration of how the Secretariat was resourced.

Martin summarised three questions: was there a risk of burn-out amongst the Secretariat and them not having enough resources; was there a risk of burn-out for Council Members; how could Council ensure there was the right balance between what Council did and what the Secretariat did. After discussion he said that these things should be discussed between the Chair and the CEO, with recommendations back to Council.

Martin said that once the Minister had been briefed about the review they would both talk over the recommendations and he would brief him on the Council’s work programme.

Piri suggested a meeting of the Council with the Minister, the CEO and advisory members.

Secretariat’s Report

The Secretariat’s Report was tabled.  No issues arose.

Financial Report

The Financial Report was tabled.  There was discussion about the need to improve the Council’s financial planning processes and for the Budget Working Group to meet.  There may be a need for a new working group to consider work programme proposals.

Action: Arrange a meeting of Budget Working Group - John

Cordelia’s Travel Proposal

Cordelia’s proposal was discussed.  It was noted that the conference coincided with the World Congress of Bioethics.

Eamon moved and Wairora seconded that the Council approve Cordelia’s travel proposal.  The motion was carried.

Other Business

Barbara Nicholas Navigation Network Proposal

The Council was being asked three things:

1. Would Council write a response to the paper being circulated prior to the Steven Rose workshop?
2. Would Council members like to attend the workshop?
3. Would Council make a financial contribution?

Given the Council’s responsibilities to Maori, a question was raised about whether Steven Rose has worked cross-culturally.

Council agreed to each of these in principle.

Action: Seek clarification from Barbara by preparing a set of questions, which will be circulated to Council for comment - Secretariat

Appointments

Council was briefed on the process and progress.

Meeting Dates

Next Bioethics Council meeting to coincide with the Talking Embryos seminar.

Other 2006 meetings are provisionally scheduled for:

• Thursday 19 October
• Monday 4 December

Secretariat to email members to confirm availability.

Action: Email members to confirm availability - Secretariat

The meeting closed at 3.45 with a karakia.

Decision list

• Minutes, as amended, to be placed on the website
• Cordelia’s travel proposal is approved

Action list

• Investigate options for holding wananga - Charlotte
• Arrange Talking Embryos seminar - Secretariat
• Negotiate contract for web discussion - Secretariat
• Progress wananga - Cordelia/Charlotte
• Circulate proposal for focus groups, then set  EWG meeting date - Cordelia
• Clarification of ESR, GNS and Nga Pae O te Maramatanga Nga proposal - Chappie
• Arrange a meeting of Budget Working Group - John
• Email members to confirm meeting dates - Secretariat
• Clarify Rose proposal and circulate response to Council for comment - Secretariat