Toi Te Taiao: The Bioethics Council meeting minutes - 10 April 2006

Held at the Brewery, Wellington

Present:

• Martin Wilkinson (Acting Chair),
• Helen Bichan
• Graham Robertson
• Simon Wright
• Cordelia Thomas
• Chappie Te Kani
• Eamon Daly
• Waiora Port
• Charlotte Severne
• Anne Dickinson
• Chris Cunningham (from 10 a.m.)

Apologies: Chris Cunningham (for lateness), Piri Sciascia, and John Pennington.

Karakia

Waiora Port gave a karakia.

The Council congratulated Waiora on having submitted her thesis, and presented her with flowers.

Minutes of Previous Meeting:

The minutes of the meeting held on 2 March 2006 were confirmed as a true and correct record of the meeting on the motion of Eamon Daly, seconded Helen Bichan, subject to the following amendments being made by the Secretariat:

• Page 5, under Review of Bioethics Council, the second paragraph should be amended to say that “The reviewers had indicated they would be interviewing about 20 parties. Council suggested the following NGOs”.
• Page 6, correct the spelling to Michael Reiss.
• Page 8, under General Business, line 4, correct the spelling of Anne’s name to “Dickinson”.

Matters Arising

The Acting Chair asked that in future action items be highlighted within the body of the minutes then collected in a list at the end.

The actions were reviewed:

• Sylvia Rumball – no communication had as yet been received from her.

Chair’s Report

The Acting Chair said he had received a letter from the Minister responding to Jill White’s letter about the first question in the review. In effect, the Minister was saying that the first question about purpose was standard procedure for a State Services review and should not be read to suggest that the disestablishment of the Council was planned or on the agenda. The Minister said he supported the review process and he would work directly with the Council. The Minister made a suggestion about matters the Council should raise with the review team. Council agreed to write to the Minister acknowledging his letter, thanking him for his helpful comments and good advice. Although the letter had come after the Council had had the meeting, happily it had taken up the suggestions anyway.

Action: Cordelia to draft the letter.

The Acting Chair said he had started to draft a letter to the Minister of Health (c.c. Minister for the Environment) about concerns over “soft law” relating to the legal status of the guidelines on the importation of established cell lines. Such guidelines were not subject to normal scrutiny under the Regulations Review Committee as regulations would be. Cordelia was working further on the letter. When she had done that he would e-mail the draft letter to the Council for comment.

Action: Cordelia and Martin

Martin to approach Mike Taggart, former Dean of Law at Auckland University, for any comments on the issue of “soft law”

Martin advised that he had started to talk to members of the Maori Working Group about the tikanga project.

Budget Working Group

The Acting Chair gave his view of how a Budget Working Group would work. This meeting would make decisions on what working groups would be formed. Data would be gathered about costs, and working groups would decide how to further their projects and they would produce rough budgets. The data comes to the working group and it takes in this data and gives a budget for the Council. The minimum composition of it is Graham Robertson, Martin Wilkinson, Anne Dickinson and John Pennington. It could include someone from MfE who is a financial expert.

CRESA – Research Proposal

Cordelia said that during the focus groups it became evident that the participants felt they had inadequate information on embryonic stem cell research, cell lines, and so on. The research would dig further into this perception. She referred to the proposal included in the papers for the meeting: “How much information is enough?” a research proposal from CRESA. They proposed to go back to people in the focus groups to research what they would have wanted to know and what is the most effective technique to convey information to them. The purpose is to find out what information people need to take advantage of our processes and how best to get information to them.

Eamon asked whether it would relate only to stem cell research. Cordelia stated that the intention is to obtain information that is generalisable.

Anne stated that the real question is how do we make bioethics issues important for people, how do we get them involved with the issues.

Chris indicated that he was interested in the reasons why people are non-responders.

Moved Anne/Helen:

That the Secretariat be authorised to spend up to $10,000 on a CRESA research project that follows on from the focus groups conducted earlier in the year and which would investigate aspects of people’s engagement. 

Carried.

Action: Cordelia to restructure the proposal and circulate it to Council.

Presentation from Network PR

Geoff  Henley and Suzanne O’Rourke from Network PR gave a presentation on key issues regarding embryos matrix and a communications timetable. Suzanne said part of the strategy was to build the profile of Council as a body the media needed to approach for opinions on issues.

The proposed strategy of building momentum in the media by regularly placing in it items sourced primarily from overseas, but also with a New Zealand relevance was discussed.

The following extra columns on the matrix were suggested:

• Damage control / conflicts of interest
• Maori specific
• Key players
• Council’s interest in undertaking a particular work

Waikato Proposal

Helen said that the final tidied-up version of the proposal was on the table for the Council’s information. Chappie updated the Council on the budget issues.

In discussion, the following points were raised:

• The project should be linked in some way to the NCEA and the broad curriculum.
• The value of teaching bioethics to younger children.
• The cost of the project.
• The overall funding of the project.
• How the materials would be produced so the tool kit was in a form to be sent out to schools.
• Whether the material produced would be the sole property of the Council.

Council agreed to postpone final approval until the May meeting and in the meantime to seek information about the issues raised, and also arrange for someone from the project to attend the meeting.

Action: John

Chris said that Council needed to decide how we handle consideration of proposals. It was agreed this be a separate agenda item at the May meeting.

Action: John

Meeting with ACART

Helen reported on her attendance at an ACART meeting.  ACART had wanted a brief on Council’s understanding of what made “effective consultation”. They had discussed experiences of what Council had done and the responses it had received.

Navigating Network Steering Group

Helen reported that the group had met recently. They had reported back on the first round of the scanning templates. There would be a meeting in May of scanners to consider the output and whether the processes could be improved.

National Institute of Research Excellence for Maori Development and Advancement Conference

Waiora said that in 2004 Professor Linda Smith had approached BEC for support for the 2004 conference of the National Institute of Research Excellence for Maori Development and Advancement, but Council had left a decision in abeyance. Another conference was planned for June 2006, and Waiora suggested BEC should contribute by giving some money to support attendees at the conference in Wellington from out of district. She suggested a total of $5,000, with a maximum per person, similar to the process adopted for the Talking Technology Conference.

Moved Eamon/Helen:

That Council agree to make available up to $5,000 to assist people to attend the June 2006 conference of the National Institute of Research Excellence for Maori Development and Advancement;  those persons to have some  background in biotechnology and/or bioethics.

Carried.

Council Policies

The issue of Council having a handbook of policies was raised. Anne said she would draw up a suggested format and bring it back to Council.

Action: Anne

Draft Annual Plan 2006-07

Council agreed with the suggestion that the statements in Appendix 2 be written into the appropriate sections of the Annual Plan. If necessary, the strategies should be amended also. The “Progress” column should list the lead person responsible for each action.

Other comments on the draft plan were:

• Still unresolved was how to deal with the relationship with ACART.
• The plan needed to state clearly what was intended to do this financial year with the Tikanga project.
• How Council weighted its work agenda depended on how it decided to approach the embryo issue.

The Council discussed how it should approach the debate on how to deal with embryos without conflicting with ACART’s work.

(Debate on this was adjourned.)

Review Team Meeting

State Services Commission Reviewers Graeme Nahkies joined the meeting at 2 p.m., and Lyn Dovey shortly after. They delivered the preliminary conclusions of the Review Team.

The Acting Chair thanked Graeme and Lyn, and they left the meeting at 3.30 p.m.

Tikanga/Biotechnology - Working Group Membership

Council agreed that the tikanga project become a Council project, led by the Maori caucus. Membership of the tikanga working group would all the Maori members of the Council, plus Martin together anyone else who wished to join. The Working group will meet to elect a Chair.

Chappie advised that Charles Royal was revising the proposal and it would be ready for sign-off in a day or two. Another teleconference of the working group would then be called to work out the process from there.

Anne suggested that she was concerned about the budget and that Council should carefully examine the breakdown of the budget to ensure it was getting value for money.

Chappie to contact Charles Royal for information about the issues raised.

Martin and Simon left the meeting at 3.30 p.m., and Graham assumed the Chair.

It was agreed that the Tikanga working group would come up with a revised proposal for sign-off by Council.                

Action: Chappie

Draft Annual Plan (contd)

The Deputy Chair said a proposal was needed for the next meeting on an embryo project. It was agreed that the Embryo Working group would consist of Waiora, Eamon, Helen, Anne, and Charlotte. The Working Group would prepare a reasonably detailed proposal and bring it back to Council for discussion.

Action: Cordelia to set up meeting

Council Appointments

Council decided to defer discussion on this until John Pennington could be present to inform Council.

General Business

Minutes on Website

Council agreed that Council minutes, once approved, be published on the website, with the proviso that when Council approves the minutes it affirms that it is approving them for publication on the website.

Next Meeting

17 May 2006 in Auckland.

The meeting closed at 3.47 p.m. with a karakia.

Decisions

• The Secretariat was authorised to spend up to $10,000 on a CRESA research project that follows on from the focus groups conducted earlier in the year and which would investigate aspects of people’s engagement.
• Council agreed to make available up to $5,000 to assist people to attend the June 2006 conference of the National Institute of Research Excellence for Maori Development and Advancement;  those persons to have some  background in biotechnology and/or bioethics.
• The tikanga project will become a Council project, led by the Tikanga Working Group.
• The Embryo Working group will consist of Waiora, Eamon, Helen, Anne, and Charlotte
• Council minutes will be published on the website after Council approval.

Action list

• Draft a letter to the Minister of the Environment thanking him for his letter  - Cordelia
• Draft a letter to the Minister of Health on “soft law” - Martin/Cordelia
• Approach Mike Taggart, former Dean of Law at Auckland University, for any comments on the issue of “soft law” - Martin

• Amend the CRESA proposal and circulate it to Council - Cordelia

• Arrange for a representative from the Waikato hub to attend the May meeting - John

• Place the development of a process to consider proposals on the agenda of the May meeting - John

• Draw up a suggested format for a handbook of policies and bring it back to Council - Anne

• Contact Charles Royal for further information - Chappie.

• Arrange a revised Tikanga/Royal  proposal - Chappie

• Arrange Embryo Working Group meeting - Cordelia