Toi Te Taiao: The Bioethics Council meeting minutes - 15 October 2008

Held at the Royal Port Nicholson Yacht Club, Wellington

 Present:

• Martin Wilkinson (Chair)
• Mark Fisher
• Waiora Port
• Rosemary du Plessis
• Peggy Fairbairn-Dunlop
• Cordelia Thomas
• Brett Stephenson
• Tahu Potiki
• Huia Tomlins-Jahnke (to 2.45 p.m.)
• John Pennington
• Simon Wright
• Moana Sinclair
• Angela Sheehan (Minutes)

Apologies were received from

• Marie Bismark

The meeting commenced at 9.45 a.m.

1.  Karakia and Welcome

The Chair welcomed everyone to the meeting, and Tahu led the karakia.

2. Apologies

An apology was received from Marie Bismark, and from Peggy Fairbairn-Dunlop for absence between 11 a.m. and 1.45 p.m.

3. Minutes of Previous Meeting

It was agreed that the following amendments be made to the minutes:

• Under Chair’s Report, second bullet point, amend the spelling of Prue’s name to “Densem”.
• In item 7 – under the heading “Possible ethical issues” – replace the word “ethnical” with the word “ethical”.

That the minutes of the meeting held on 12 June 2008, as amended, be accepted as a true and correct record, and be placed on the website.

Martin / Mark - CARRIED 

4. Matters Arising from Previous Minutes

All action points were either completed or under way.

5. Council Evaluation

Council Members discussed the report prepared by Julie Warren of CRESA in July 2008 on a survey of Council Members, and they made the following comments:

General

• New Council Members coming into a project part-way through require a project briefing either by the Chair of the working group or by the Secretariat member responsible.
• There was insufficient time to work through the process during the 3 hour deliberative events.
• Facilitators must have the necessary skills.
• It would be useful to have skilled recorders to capture the richness of the deliberations.
• Authoritative information should be provided to set the scene at the beginning of deliberative events – for example by using a professional DVD.
• The process required participants to consider trade offs, but Pacific people and other groups do not necessarily think in terms of private trade-offs resulting in the formation of public policy.

Working Group

• The feedback comments are very useful for the working group.
• It would have been better for the Chair to have had previous experience on a working group before chairing the working group of a major project.
• Ideally the working group should have analysed the material from the deliberations before it came to Council.
• Involving the new Council Members in the working group hugely benefited the group and resulted in a much better report.
• Consideration could be given to hiring a project manager for major projects.

Council / Secretariat Operations and Interactions

• Council noted that they were highly appreciative of the level and quality of the support given by the Secretariat.
• Being a hands-on Council is valuable.

7. Nano Game to Facilitate a Council Deliberation

Council Members participated in a deliberative exercise on nanotechnology in the form of a game produced by Democs.

6. Satisfaction with Current Submission Process

Does Council think the submission process is worthwhile and should continue?

Council resolved that the submission process is worthwhile and should continue. The following points were made in discussion:

• Council Members were encouraged to bring to the attention of Council/Secretariat potential submissions within the Terms of Reference.
• In the past, most issues Council has submitted on have been in the health area. Council should not lose sight of other areas for possible submissions.
• It would be good to have a more Council members involved in the working groups developing future submissions.
• Council should only make submissions in areas in which Council Members have expertise.

8.  Proposal for Broader Governance of the Nano Project

The Chair said that the Nano Working Group had met in July. He is Chair of that group.

The working group recommended to Council that people from outside the Council and Secretariat should be brought into the group that would manage the project. The Chair outlined the benefits of that proposal.

There was general agreement to broadening the governance of the project, although there was a caution to ensure that the BEC maintain its independence and control.

The working group would give further thought to the “how” and “who”.

9. Proposal for a Project on Sex Selection and Organ/Tissue Donation by Incompetent Donors

Council discussed a proposal by the Secretariat for further work coming out of the “Who Gets Born?” project. 

Does Council wish to add this project to its current work programme?

Council agreed to further exploratory work into sex selection- including sperm sorting and free foetal DNA testing.

Council also agreed that further work on organ/tissue donation should be pursued and consideration given as to whether these should be combined or separate pieces of work.

If so, which Council Members wish to be on the working group?

Marie Bismark (to be approached) and Mark Fisher.

10. Pacifica Pre-Birth Project

Cordelia reported on actions that had been taken to disseminate the Pre-Birth Testing Report to Pacific participants and other key Pacific people with interest in the recommendations.

11. Government Response to Pre-Birth Testing Report

Neil Cooper and Fiona Gregson of the Ministry for the Environment joined the meeting. They recorded an apology from the Minister. They reported on the responses to the “Who Gets Born?” report from the government.

The Chair thanked Neil and Fiona for coming and for the work they had done.

Neil Cooper and Fiona Gregson left the meeting

12. Honoraria Levels

Council discussed whether honoraria levels should be reviewed, and it was agreed that the Secretariat should calculate what the rate would be if inflation since 2002 was taken into account, and bring the matter back to Council.

Action: Secretariat

13. Proposal for a New Travel Policy

Council discussed the request by the Ministry for the Environment that it should review its policy on travel and clarify its fees and allowances policy.

The Council decided that:

• Travel at the behest of Council should attract honoraria payments and expenses.
• Travel not at the behest of Council but relevant to it may attract reasonable and actual expense payments in addition to any support with air fares/accommodation but will not attract honoraria.

At the time the Council makes a decision to support international travel by a Council member, Council should make it clear whether the travel does or does not attract honoraria payments.

The Ministry had requested that Council submit an annual international travel plan for Council Members. It was agreed that, the beginning of the financial year, it would put forward a plan to the Ministry.

It was suggested that the Chair be offered Koru club membership.

14. Chair’s Report

• He had attended the meeting of the Ad Hoc Ministerial Coordination Group on Bioethics.
• He had met the Ministry for the Environment’s new Chief Executive.
• Lindsay Gow, the Deputy Chief Executive of the Ministry for the Environment, raised the possibility of Council speaking to senior civil servants of other ministries about its innovative engagement processes.

15. Maori Working Group Report

• Tahu is the new Chair of the group.
• The group had met and reported as follows:
  • The Maori Working Group was hoping to progress the tikanga project.
  • The Maori Working Group see value in engaging with those responsible for Te Hau Mihiata in studying the interface between western knowledge and traditional Maori knowledge.
• The Maori Working Group endorse the title of the e-newsletter as Korero Bio.
• The group had received a briefing paper on patenting and will consider involvement in any Council submission to the select committee on the Patents Bill.
• There was a position for a kaumatua or elder, as a full Council Member with full voting rights. The Maori Working Group recommends appointing retiring Council Member Waiora Port to that position. It believed that she could continue to be a valuable supporter of the work of the Council and would provide a significant bank of institutional memory.

(Waiora left the room for discussion of this suggestion.)

Council agreed to this decision unanimously and by acclamation.

Waiora rejoined the meeting.

16.  Variance Report

Council discussed the Variance Report.

17. Secretariat Report

The report was noted. Simon added that, since the report was written:

• The Secretariat had been invited by the National Screening Advisory Committee be involved in two projects, one of which was on informed consent.
• Requests were being received from the Ministry for the Environment to inform staff about the processes used in the “Who Gets Born?” project.

18. Conflicts of Interest

None advised.

19. Other Business

19.1 Briefing for Incoming Minister

A briefing paper for the incoming Minister would need to be drafted, based on the 2005 Briefing for the Incoming Minister, and circulated for comment.

Action: Secretariat

20. Papers for Information

20.1  Special Recognition Certificate for International Association for Public Participation 2008 Core Values Awards “Project of the Year”

20.2  Conference and Meeting Reports from Slovenia and UK – John and Simon

20.3 Conference Reports - Cordelia

20.4 Report on Sponsorship of Schools Debating by New Zealand Schools Debating Society

Next Meeting

The next meeting would be held in Auckland on Monday, 1 December.

The meeting concluded at 4 p.m.

Action list

• Amend previous minutes and place on website.

Action: Secretariat

• Consider governance structure of nano project.

Action: Nanotechnology working group

• Plan further work on sex selection and organ/tissue donation and consider whether these should be combined or separate pieces of work.

Action: Secretariat

• Calculate honoraria levels.

Action: Secretariat

• Prepare Briefing for the Incoming Minister and circulate for comment.

Action: Secretariat