Toi Te Taiao: The Bioethics Council meeting minutes - 26 September 2006
Held at the Brewery Bar and Restaurant
26 September 2006
Present:
- Martin Wilkinson (Acting Chairman)
- Eamon Daly
- Helen Bichan
- Simon Wright
- Graham Robertson
- Cordelia Thomas
- Waiora Port
- Chappie Te Kani.
Martin Wilkinson opened the meeting at 9.40 am
Karakia:
Waiora Port gave a karakia
Apologies:
- John Pennington
- Chris Cunningham
- Anne Dickinson.
To keep members better informed, draft minutes will be circulated a week or so after a meeting.
Minutes of the previous meeting
With the amendment to correct the spelling of Piri Sciascia’s name, it was Agreed that the Minutes of the meeting of 19 June 2006 be accepted as a true and correct record and can be placed on the website subject to the usual modifications.
Martin Wilkinson
Matters arising
From the action list:
- Contacting Moe Milne is no longer required.
- Arranging Talking Embryos seminar: has been done
- Contract for web discussion: to be discussed later
- Progress wananga: to be discussed later
- Proposal for focus groups: completed
- Clarification of ESR, GNS and Nga Pae O te Maramatanga Nga proposal: the concept had been put forward and is to go to FoRST. They would like the Council to endorse the proposal but are not asking for financial support.
- Arrange a meeting of Budget Working Group: to be arranged.
- Confirm meeting dates: as discussed above
- Clarify Rose proposal and circulate response to Council for comment: done and there have been no objections.
Action: Put minutes of last meeting on website - Secretariat
Chair's report
Appointments:
The Council is short of members and of a Chair. Subject to the approval of the Minister, Martin Wilkinson will be appointed Chair. Martin commented that he will be out of the country from April to June 2007, and that his appointment as chair will create a further vacancy on the Council. A list of names is being forward to Minister. The Minister is away and will meet with Martin on 12 October when it will be stressed that new appointments to the Council are urgently needed. The hope is that by the end of October new members will have been appointed and can attend the December meeting. As some current members are due to retire, further names need to be put forward. There was also a request for discussion about regular attendance at meetings.
Animals:
Martin Wilkinson had received a letter from NAEAC and drew the Council’s notice to the annual report. NAEAC have been directed by their Minister to respond to the Xeno Report; regarding non human hominids and the matters the Council heard about the welfare of animals in research. Martin is drafting a reply.
Embryos:
Helen Bichan and Martin Wilkinson met with ACART before the discussion document came out.
MfE:
Martin Wilkinson had a meeting with Hugh Logan. He expressed interest in the work of the Council. He would like to come along to a meeting and see if there are environmental issues the Council could be working on. Lindsay Gow has commented favourably on the HER discussion document prepared by the Council.
Embryo Working Group
Helen Bichan reported that the focus group contract has been signed and the groups are under way. A meeting had been held with TNS to clarify the aims of the project.
Cordelia reported that she attended the first focus group. Some of the themes were:
- Most of their information came from media, TV and internet;
- Embryo is something to do with fertility treatment and genetics;
- Re IVF embryos and embryos from donated gametes – this is a matter for the parents;
- Cloned embryos - absolutely no, even when only used for research. They felt that once these techniques became efficient people would misuse them;
- When showed a picture of embryo one woman felt despite the visual it was a still little baby;
- The research would be done overseas anyway;
- They were opposed to any genetic modification of humans/designer babies, but keen on the idea of curing diseases;
- Globalisation means that similar rules are needed throughout the world;
- Not enough information to form reasoned views;
- Did not trust scientists or the government.
Cordelia suggested that having a Council or Secretariat member in focus groups to clarify factual information would be useful. There are nine more groups to come.
It was discussed whether having a member at the focus groups, would slant the conversation. At the previous focus groups CRESA were open to us sitting in and clarifying points. The draft report is expected in a month.
The Web dialogue has been running. Simon reported on the summary he had prepared. It shows the media in which advertising has been placed. Over 900 pdf and 500 html discussion documents have been downloaded from the website. The forum has had 450 people logged on but only 30 or so have posted comments. There may be thousands who have viewed but not logged on. Initial debate brought out strong views about embryos having full rights of a person and may have dissuaded people with other views from posting comments. The conversation has moved into a two-way one with other issues coming up.
Charlotte had proposed that she would organise a Wananga, but this has not eventuated. Waiora Port has some proposals and these should be used for the project next year. She has attended an ACART Maori Advisory Group panel discussion. She will circulate the report from this.
There was discussion as to whether a wananga at the Kohanga Reo is feasible. Waiora Port mentioned that there is only one Maori focus group, and there are consequences at only holding one or even two consultation sessions because it will not be seen as adequate. However, there is more time now, as the ACART timeline has been extended. The MWG will meet to discuss this and come back with a significant, respectful way of getting consultation into this process.
ACART hope to get their discussion document out in November sometime.
Guidelines such as PGD expire in November next year – this date is in the legislation and may need an extension.
Sylvia Rumball has advised they would not be consulting over the Christmas period – this will be extended through to around March. Their consultation has to be in the terms of the legislation and will be narrowly focused.
Action: The MWG will meet to discuss a significant, respectful way of getting consultation into this the Embryo project
Disability Symposium
Eamon spoke to his proposal to hold a seminar in Wellington. He did not envisage facilitation by the Secretariat. Cordelia asked whether this would be more relevant to ongoing work around genetic testing and PGD. Eamon agreed, but pointed out that there is feeling that there is under-representation of disabled persons in bioethical debates generally and this needs to be tapped. Simon said that representatives from the Ministry of Social Development Office of Disabilities Issues attended the hui arranged by the secretariat, and felt that there may be possible to do joint work with them. Eamon said November would be realistic and that he would get a good response from Wellington people. DPA has its annual conference in Auckland on 24 – 26 November but the agenda is full for this.
The Council decided the seminar should be open to anyone who wished to attend and approved funding in principle for this and agreed to Council endorsement. Eamon will now prepare a detailed proposal and budget.
Action: Eamon prepare a detailed proposal and budget
“Who gets born?”
Council viewed a BBC video about the Whittaker family regarding PGD to create saviour siblings.
It felt that because of new members coming on to the Council, no decision should be made in relation to the work programme. However, the Secretariat should be identifying issues in the meantime.
HRC may be proposing joint work with the Council with regard to the discrimination and genetic testing.
Regarding the nature of the dialogue for this project, this should wait, but if the appointments take some time decisions will need to be taken at the next meeting.
Council then debated some issues around genetic testing before birth:
- Sex selection The discussion pointed to the fact that sex selection should be a topic for public engagement. It has links to the report from the Human Genome project also.
- Saviour Siblings: This is selecting an IVF embryo with the intention of producing a child who is HLA matched and who can be a suitable donor for a sick sibling. Issues discussed:
- Saving the new child from a genetic condition compared with a sick sibling with a non-inherited condition.
- -Producing a child who is expected to be a donor to their sibling thereafter.
- -People saving cord blood for uses such as healing parents’ sports injuries faster
- -What’s involved with regard to the child being born – will it just involve the umbilical cord blood?
- -Should our guidelines be changed so it does not have to be an inherited condition?
- -What does it mean to say that the condition must be “serious”?
- - How realistic is it for the guidelines to provide that the parents must only intend to use the cord blood?
- -What is the distinction between selecting and designing embryos?
Carriers:
If you select against a carrier, the carrier child would not have had not have the condition and could have led a normal life. However, this embryo might not be selected anyway. This is a way to minimise some conditions.
Late onset conditions:
Selecting for illnesses which may be able to be cured in the future ie cancers, Alzheimer’s. Also those that are not fully penetrant. The person may lead a good life for many years before they get the condition or may not get it at all. Genetic determination is a dangerous route as other factors have a part to play in the outcome of a person, i.e. environmental factors.
Disability:
Future generations may benefit by eliminating many of these genes from the population. Fewer disabilities means less money being spent on this area. People with congenital disabilities see themselves as different to those who have become disabled through an accident. People may value their lives more highly once they have become disabled. Some, if given the choice, would reject any chance of reversal of their condition. People with disabilities also worry about the future as disabilities will be ‘selected’ out to some extent.
General:
On the whole, most people are not going to be having their babies by assisted reproduction but as the success rate of IVF increases and fertility declines, the percentage of babies being born by IVF may increase. If the cost of the drugs involved comes down, IVF may be even more popular.
How much do parents understand about the tests being done when a woman is pregnant? –a conversation with the public is needed about this. The results of tests are also sometimes unclear.
Conclusions
Council felt that public engagement around genetic testing seems valuable and could feed back into ACART’s workstream. Taking into account the fact that HCR may want to be involved there are 2 clear areas- “Who gets Born?” and “Genetic Discrimination” involving insurance, employment etc.
Secretariat to prepare paper for the next meeting, outlining the advantages and disadvantages of a variety of engagement processes relevant to this project, so a working group can be put together for next year.
Action: Prepare a paper on the “Who gets Born?” and “Genetic Testing” proposals: Secretariat
Talking Embryos
An evaluation form was completed and a report of the findings will be given at the next meeting. Council stated that it was a great success and the secretariat was congratulated, saying there were good speakers, good, enthusiastic turnout and excellent way to introduce people to the project and encourage them to engage with ACART’s processes. The Council felt that in principle this type of engagement should be repeated in the future
If more question time is needed, then there would need to be fewer speakers. Linda Clark has offered to chair again, and it was great to have the press presence.
It is intended to get the raw audio and video material edited. Secretariat agreed to email people for permission to use their items and provide them with an opportunity to see what is being produced.
Actions:
- Report on the evaluation of the “Talking Embryos” seminar
- Obtain consent for use of video from participants
- If requested provide material to participants for comment - Secretariat
Update of Bioethics Council Website
The 05/06 plan asked for the Secretariat to review the website. A proposal submitted by Frank and Shift was considered. It was recommended that contract negotiations be started but it was flagged that this could have significant resourcing implications on the Council and the Secretariat.
Council discussed the proposal and the process undertaken. It was suggested that contact with SeniorNet should be explored as there are some keen people on this. This initiative is intended to fit into the overall communications plan.
It was proposed by Eamon, seconded Martin Wilkinson:
That the Council gives its approval to the Secretariat to enter into and conclude contract negotiations with Frank and Shift on the basis of the attached proposal. Carried
Policy Manual
John Pennington would like the policy manual to work as an induction manual for new members, so it needs to provide background on how the Council works and also contain the policies and rules.
The rule for a quorum should be a majority of the current membership. Regarding attendance of members at meetings, this is intended to be an indication of what is expected of members. Members who do not attend regularly lose track of what is going on.
It was suggested that a meeting be scheduled of the Council members only.
The general principle that the Council will take steps to appraise its own performance once a year was agreed.
Any concerns about the draft policy manual should be forwarded to the Secretariat.
Maori Working Group
Chappie advised he will be out of the office for 30 days but working from home for the last three weeks.
The Charles Royal project is at the final draft stage.
The replacement for Charlotte missed out on the current process. Piri and Chris’ terms come to an end next year. Suggestions of names of prospective replacements should be sent to Chappie.
Waiora Port had appeared in several short segments on Maori TV talking about the Bioethics Embryo Seminar. Council viewed a video of these and commended Waiora on her effort.
Annual Plan/End of Year Report
06/07 annual plan will be revised to take some of the policy statements out. Outstanding items have been noted on the plan and will be brought to the attention of the Council by the Secretariat.
Council discussed whether it should make the media aware that Government has not made a public response to any of its reports. Progress in being made on establishing the ad hoc ministers’ group which will provide a means to have recommendations aired. However, an issue for the Council is to be effective and to be seen as effective. This will be raised by Martin Wilkinson during his conversation with the Minister.
The report was noted by the Council.
Other business
Financial Working Group Report:
One of the recommendations would be to look at the overall Council’s effectiveness and ask whether more resources could be put into any particular area to improve the effectiveness and whether the effectiveness could be improved by putting more resources into the Secretariat.
Moved Martin Wilkinson, Seconded Helen Bichan:
That Graham Robertson takes over as Chair of the FWG. Carried
Secretariat’s Report
This paper had been circulated.
The Secretariat also reported on:
- Conference reports from Cordelia and Simon.
- At the World Congress, Simon was advised that the Council’s Xeno report had become a text book at a Northern Ireland university.
- The international journal Medicine and Law wants to publish Cordelia’s paper from the WAML conference.
- Sheila McLean will be in NZ in February and may be available to give a public address to publicise the “Who Gets Born?” project.
Asian biotechnology conference
Cordelia has had a paper accepted for this conference in Thailand in March.
The Council gave approval for Cordelia Thomas’ travel, registration and accommodation to the Asian Biotechnology Conference in Thailand.
Eamon Daly, seconded Waiora Port. Carried
Neuroethics
Regarding Barbara Nicholas’ Report on Neuroethics, the Council agreed to have this as an Agenda item and asked the Secretariat to structure a discussion.
Actions:
- Agenda Neuroethics and structure a discussion process-
- Agenda “How to Encourage Public Engagement in Technology Related Dialogue Processes” and structure a discussion based on the CRESA report. - Secretariat
Guthrie Test discussion document
Cordelia Thomas recently was asked by the Ministry of Health to comment on a draft discussion document about the Guthrie Test samples. Cordelia has commented on the draft document in a personal capacity and suggested that when the consultation document comes out, a working group should be formed to consider whether a submission was necessary.
Next meeting
- It was agreed to delete the 19 October 2006 meeting so:
- Next meeting is Monday 4 December 2006 in Wellington.
The meeting closed at 3.45 with a karakia.
Decision list
- Council gave its approval to the Secretariat to enter into and conclude contract negotiations up to the value of $48,245 with Frank and Shift on the basis of the proposal.
- Graham Robertson takes over as Chair of the FWG
- Approval was given for Cordelia Thomas’ travel, registration and accommodation to the Asian Biotechnology Conference in Thailand
Action list
- Eamon: prepare a detailed proposal and budget for his proposed seminar
- Secretariat: prepare a report on the evaluation of the “Talking Embryos” seminar
- Secretariat: obtain consent for use of video from participants
- Secretariat: provide material from “Talking Embryos” to participants for comment if requested
- Secretariat: Prepare paper for the next meeting, outlining the advantages and disadvantages of a variety of engagement processes relevant to “Who Gets Born?” project.
- 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 based on the CRESA report.
- Secretariat: Arrange MWG meeting to discuss a significant, respectful way of getting consultation into the Embryo project
- Secretariat: Put minutes of last meeting on website
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