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Text of ICBC Oral Submission on Use of Embryonic Stem Cell Lines in Research
By | Oct 9, 2007
Guidelines on Using Cell Lines from Established Embryonic Stem Cell Lines for Research
The Interchurch Bioethics Council represents the Anglican, Methodist and Presbyterian churches of Aotearoa:New Zealand. We have nine members with a wide range of knowledge and experience, including medical, scientific, ethical, theological, educational and cultural expertise (many members wearing more than one hat!).
You have our submission, and I will not discuss all the points raised. I will make specific comments on these matters, and allow time for questions at the end.
Specific comments:
- We believe the Guidelines should be Interim guidelines.
- More attention needs to be given to cultural and spiritual issues, in addition to ethical issues.
- There are inadequacies in the consent procedures.
- There is an over-emphasis on clinical benefits.
- I will comment on the review process and the use of a register.
- I will point out that more consultation that will be needed when it comes to the matter of creating stem cell lines in New Zealand.
Reasons why we believe these should be Interim Guidelines:
It is unethical and illogical to import embryonic stem cell lines for use in New Zealand if the production of such cell lines in New Zealand is not approved. These guidelines must therefore be seen as an interim measure to allow research to proceed while the matter of producing embryonic stem cell lines is fully and publicly debated. Otherwise there is a danger that the present guidelines will become de facto guidelines for the creation of cell limes in New Zealand and there are reasons, as follow, why the current guidelines are not adequate for this.
The consultation time allowed for these guidelines was far too short, particularly as it came during the summer holiday period, and wider consultation is needed. For example, Te toi Taiao:the Bioethics Council found that the people in their limited focus groups were not happy with the use of embryos which were not required for implantation being used to make stem cells and that the creation of embryos for research purposes was more acceptable. We found that in our ‘constituency’ of church members the creation of embryos for research purposes was not generally acceptable, but there was more approval for the use of embryos which would otherwise be destroyed. Such different opinions from two significant groups support the need for wider consultation in the community.
Under Section 36 in the HART Bill the Advisory Committee is required to provide information and advice on matters relating to research including that on human embryos. This advice would be expected to be very relevant to the guidelines we are currently discussing but cannot be taken into account if the present timeline is adhered to. They could be taken into account in the future if the current guidelines are interim.
Insufficient recognition was given to cultural and spiritual issues.
Cultural and Spiritual Values:
The findings of the Royal Commission on Genetic Modification stated that the choices made by New Zealanders are linked to their spiritual, ethical and cultural values.
In the NOOM Bill (New Organisms and Other Matters) the Minister for the Environment’s call-in powers for applications submitted to ERMA were amended to include ‘significant cultural, ethical and spiritual effects’.
Te toi Taiao:the Bioethics Council appointed by the government following the report of the Royal Commission is an advisory body on cultural, ethical and spiritual issues in biotechnology in New Zealand.
These examples, and there are others, demonstrate that we recognise the importance of cultural and spiritual values. However, in the Guidelines we are discussing, there is a Section on ethical issues but very little on cultural or spiritual issues.
Some definition might be helpful here. There is a well-recognised ethical framework developed with reference particularly to clinical procedures and research. Cultural issues in New Zealand are mostly seen in relation to Maori values. However, in addition to having high regard to the values of our Treaty Partners, we need to recognise that all people have cultural values and New Zealand is a multi-cultural society with diverse values. The more difficult question is what do we mean by spiritual? There is no simple definition of spirituality, and it would take a lot longer than we have this morning to cover this topic. Spirituality is an awareness of the non-material aspects of life. Spirituality is a framework of beliefs and values which inform our living experience and our world view; world view being how we see the world and our place in it, and therefore how we act within the world. Maori spiritual values have added a huge amount to our understanding of spirituality, but we must also recognise that for all of us spirituality is that which gives us meaning to life.
Consent:
Guideline 12 requires the researcher to state how left over embryonic cells will be dealt with. This is a matter that should be addressed in the consent form and opportunity given for appropriates procedures to be used, e.g. a suggestion made to us was that it might be appropriate for Maori to have a karakia said at the time of disposal of cells.
It has to be recognised that it is not possible to predict how cell lines will be used and therefore consent is not fully informed. We favour embryonic stem cell research being limited to serious diseases and their treatment or related to the processes of human development. This would give the person(s) who give consent some control and the domain of research possible would still be very broad.
We raise the question of who will give consent to the use of embryos which are not required for implantation if the embryos have been created for parents who are not the genetic parents, and in fact donor gametes have been used. Such donors do not have any say in the use of embryos for implantation, so what will be the situation here?
Clinical Benefits:
We recognise that the Guidelines do say that the benefits will not be available for a long time, but still feel that the clinical benefits are over-stated. People hear what they want to hear, and it is common when talking to groups to find people are greatly influenced by what the research will mean for their family member who has an illness which may be researched. The enthusiastic reporting of work which has not yet been validated such as the SCNT work in Korea is likely to lead to false hopes.
Information is not given about alternative possibilities e.g. that the current work on spinal repair, which is admittedly also in very early stages, is being done with adult stem cells from the patient.
Review Process;
We think it is important that the ethical review of the use of human embryonic stem cells is done on a case by case by an ethics committee which has appropriate expertise and recommend that ECART take up this role. We agree it would be appropriate to establish a register so that stem cell lines would not have to be continually approved and re-approved. However we suggest that while transparency and openness is important, it may be unwise to list on a website the institutions which are holding/researching these lines. Such information could be available on request from the Ministry of Health.
Conclusions:
- In summary, these guidelines should be of an interim nature.
- More attention should be given to cultural and spiritual values.
- There are matters to be addressed in the Consent Forms
- Clinical benefits should not be over-emphasised, and more information could be given about some of the options e.g. use of adult stem cells.
- ECART would be the appropriate committee for case-by-case review
- MOH would be the body to maintain a register of approved embryonic stem cell lines
The next step following the publication of these guidelines will presumably be preparation of guidelines for the creation of human embryonic stem cell lines in New Zealand. Indeed, as I said at the beginning, it is not ethical to put in place guidelines for the use of imported cell lines if creation of such cell lines are not going to be approved within New Zealand. In the consultation required for these guidelines, there should be more consultation and public debate and inclusion of the points listed above.
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