Toi Te Taiao: The Bioethics Council meeting minutes - 4 December 2006

Held at the Brewery Bar and Restaurant
4 December 2006

Present:

• Martin Wilkinson (Chairman)
• Eamon Daly
• Helen Bichan
• Simon Wright
• Graham Robertson
• Cordelia Thomas
• Waiora Port
• Chappie Te Kani
• Piri Sciascia
• John Pennington
• Anne Dickinson
• Marie Bismark
• Peggy Fairbairn-Dunlop
• Diane Barker (Minute-taker)

Martin opened the meeting at 9.50 am

Karakia:

Piri Sciascia gave a karakia.

Welcome:

Martin welcomed everyone to the meeting, particularly the new members joining the Council today. He invited those present to introduce themselves.

Apologies:

• Chris Cunningham
• Rosemary du Plessis
• Mark Fisher

Minutes of the previous meeting

It should be noted that the Disability Symposium (page 4) should be open to everyone, whether they had a disability or not. Eamon Daly reported that this would now be held in March. He will prepare a plan and a budget prior to the next meeting.

It was agreed that the Minutes of the meeting on 26 September 2006 be accepted as a true and accurate record and could be placed on the website subject to the usual modifications.

Martin Wilkinson/Helen Bichan
Carried

Matters arising from the minutes:

• Secretariat Report on Talking Embryos Seminar has been completed.
• Secretariat obtained consent for use of video from participants.
• No one requested material for comment from Talking Embryos.
• “Who Gets Born?” paper – covered later in meeting.
• Neuroethics – this would be reconsidered early next year.
• “How to Encourage Public Engagement in Technology Related Dialogue Process” would be reconsidered next year.
• MWG meeting to discuss a significant, respectful way of engaging with Maori about embryo research – a teleconference and Wananga had been held and would be further reported on later.
• The previous minutes have been placed on the website.

John Pennington informed Council members that the Secretariat had been given another staff member under the Ministry’s graduate recruitment programme. The new member would start work in early February and has a background in philosophy and ethics from Auckland University.

Chair's report

Appointments:

Martin Wilkinson had a brief meeting with the Minister in October at which he stressed the urgency of the new appointments.

Ad hoc Minister's meeting:

The work of the Council crosses several areas – including Health and Maori Affairs. The State Services Commission Review had recommended setting up an Ad Hoc Ministers meeting, where the Minister for the Environment could meet with other relevant Ministers. The first of these meetings had been held between the Minister for the Environment and the Minister of Health. Another meeting, with Martin Wilkinson present, would be planned in the future.

The Council discussed arranging a meeting between the Maori Working Group and the Associate Minister for the Environment, Nanaia Mahuta.

Animals:   

Martin had replied to the NAEAC welcoming the opportunity to meet with them. He had received a reply from NAEAC’s new Chair. This correspondence was now closed.

Policy Manual:

Martin alerted members to ambiguities regarding Council Members’ payments in this document. Chappie Te Kani is seeking further clarification.

Human Rights Commission:

Submissions to the Human Rights Commission on the Genetic Discrimination in Insurance discussion document are due on 11 December. Cordelia Thomas is working on a submission.

Human Tissue Bill:

The Human Tissue Bill has been referred to the Select Committee and submissions are due by 16 February. Martin would like to work on this and asked other members who wished to participate to advise him of their interest.

CEO Ministry for Environment:

Martin had met with Hugh Logan, CEO of the Ministry for the Environment who expressed an interest in attending a Council meeting to talk about environmental issues.

Finance report

Budget:

Graham Robertson presented the Budget and Finance Report. Discussion took place on the Budget.

Dialogue, deliberation, and "who gets born?"

Martin Wilkinson said that Council members needed to decide today whether it would undertake the project “Who Gets Born?” and, if so, the scale of the project.

John Pennington gave a presentation on public engagement and the international context, illustrating how the Council’s previous processes might move to another level of engagement.

Discussion took place about evaluation of Council projects.

Council members watched a DVD “Chosen Children” as an introduction to dialogue on “Who Gets Born?” Cordelia presented members with discussion points on why the Council might choose this topic. Chappie Te Kani spoke about the method and time frame and Simon Wright about the engagement methods.

Discussion took place on the proposed “Who Gets Born?” project:

• John Pennington advised members that the Tikanga project would continue whether or not the project was approved.
• Members considered whether the project should be confined to PGD or include pre-birth testing generally.
• The Council needed to emphasise that the Bioethics Council purpose was to provide trustworthy and neutral information and an opportunity for people to talk.

Council members agreed to proceed with the project “Who Gets Born?” covering pre-birth genetic testing and that it should be a large scale project. It was agreed that genetic discrimination in insurance and employment would not be included in this project. Piri suggested the Maori sub-title “Kia whanau ko wai” – “so that who will be born”. Members on the working group will be: Helen, Eamon, Waiora, Marie and Peggy. Eamon offered to be Chair, subject to resolution of issues relating to his PhD.

John advised that the working group would meet early February 2007.

Network communications report:

Suzanne O’Rouke from Network PR presented her Report to the Council members. The report reviewed the communications and media strategy for the Human Embryos for Research project.

Report of the Embryo Working Group

Visit to Otaki Women’s Health Group:

Helen reported on the Otaki public meeting two weeks ago attended by Helen and Waiora. There had been 20 people present, male and female, Maori and Pakeha. They had presented the Maori context and given real examples, and then held a dialogue on the topic of human embryos. The meeting concluded with the Council members recommending that people make submissions to ACART.

Wananga:

Martin reported on the wananga at Richmond Road Kohanga Reo last Monday. Helen and Waiora also attended. There were 23 people present, 7 of whom were men. It was facilitated by Dr Marewa Glover and Wendy Rapana. Helen asked for Wendy’s report to be distributed to Council members. Helen noted the EWG would meet once ACART’s document is available.

Maori Working Group Report:

Waiora said that it had been difficult to try to get everyone together and that the group had finally had a teleconference to discuss the Tikanga Project and Charles Royal’s literature review. This was a sizeable document and the MWG needed to work through it.

Maori MPs:

The Minister for the Environment has given his approval to a meeting between the MWG and Maori members of Parliament. The MWG need to discuss their approach to the meeting.

Wai 262 hearing:

The Crown would be presenting evidence and responding to allegations from claimants on 15 December. The Deputy Chief Executive for the Ministry for the Environment in his brief of evidence would be talking about the Bioethics Council and ERMA.

MWG meetings:

The Maori Working Group would meet before Christmas to discuss the next stages of the Tikanga project, and possibly meet with Charles Royal in the New Year to discuss his report and suggestions for the next step.

Upcoming Projects:

“Who Gets Born? – Kia Whanau ko Wai” and submission on Human Tissue Bill.

Waiora noted that the Council needed to do something about replacing Charlotte.

Human Tissues Bill Working Group

Martin and Marie indicated they wanted to be on this group. Martin suggested that they would need Maori input into this, as well as someone from the Secretariat. The submission had to be completed by February 16 and would be circulated to the whole Council by email prior to submission.

Meeting dates for 2007

Martin will be overseas from 20 March to 25 June.

Meeting dates for 2007 were set as follows:

20-21 February 2007 (an overnight meeting)

16 April

2 July

3 September

5 November

Secretariat report

The report had been circulated to members and was noted. John Pennington said that the Secretariat had been busy since the last meeting and had not always had a full complement of staff.

Other business

Asian Bioethics Conference, Bangkok, March 2007

Eamon Daly has had a paper accepted for this conference and sought financial assistance from the Council for himself and his assistant. The Council agreed to this proposal subject to the submission of a budget to the Secretariat for Council approval.

Navigator Network:

Helen commended the report to the Council and noted that two Secretariat members are scanners. The report was noted.

Report from Wilf Malcolm Centre:

This report was noted. The meeting closed at 3.50pm

Action list

• Secretariat: Agenda Neuroethics and structure a discussion process at a future meeting.
• Secretariat: Agenda “How to Encourage Public Engagement in Technology Related Dialogue Processes” and structure a discussion at a future meeting.
• Martin: Attend next meeting of Maori Working Group
• Secretariat: Put the report on the wananga at the Kohanga Reo on workspace.
• Secretariat: Arrange meeting of MWG with Maori MPs.
• Chappie: Coordinate meeting of MWG to discuss Tikanga project and Charles Royal’s work
• Secretariat: Start process to replace Charlotte
• Secretariat: Arrange for CEO of MfE to attend a Council meeting next year.
• Cordelia: Coordinate writing of a submission on Human Tissue Bill with Martin, Marie and a member of MWG before February 16.
• Secretariat: Agenda item “Review and Taking Stock of Council” for next meeting.
• Eamon: Prepare budget for Bangkok conference
• Eamon: Prepare plan and budget for March Disability Symposium
• Secretariat: Minutes of September meeting on website
• Chappie: Further clarification on Council members’ payments
• Cordelia: Submission to HRC
• Cordelia: Arrange EWG meeting once ACART’s document is available