Analysis of online discussion on the cultural, ethical and spiritual aspects of human embryo research
March 2007
Introduction
Toi te Taiao: the Bioethics Council (the Council) was established in December 2002 following a recommendation by the Royal Commission on Genetic Modification.
The Council’s Terms of Reference direct it to:
- Provide independent advice on biotechnological issues involving significant cultural, ethical and spiritual dimensions.
- Promote and participate in public dialogue on cultural, ethical and spiritual aspects of biotechnology, and enable public participation in the Council’s activities.
- Provide information on the cultural, ethical and spiritual aspects of biotechnology.
The Council decided to undertake a project on the use of human embryos in research, beginning in July 2006. The Council worked on this project in cooperation with the Advisory Committee on Assisted Reproductive Technology (ACART) which was required by the Human Assisted Reproductive Technology Act 2004 to consult the public on the use of human embryos and gametes in human reproductive research before providing advice to the Minister of Health. The purpose of the Council’s processes was to inform the public and encourage public discussions about research using human embryos, with the hope that such dialogue would encourage public participation in ACART’s process.
The Council used a number of different methods to engage with the public. These included:
This paper reports on the online web based discussion forum.
2 Online discussion
The Bioethics Council’s Terms of Reference direct the Council to promote and participate in public dialogue. To do so it must facilitate involvement by all New Zealanders in dialogue on the cultural, ethical and spiritual dimensions of biotechnology. The Council carried out an online discussion with the aim of giving as many people as possible access to its dialogue on the cultural, ethical and spiritual aspects of using human embryos in research.
With internet technology it is now possible to conduct discussions virtually in real time with participants who may be dispersed over a wide geographical area. As a method of public engagement online discussion forums are increasingly being used by local and national governments to seek the views and opinions of their constituents. Many believe that electronic discussion boards offer a way to encourage participatory democracy.
The online discussion was launched on 15 August 2006 and continued as a moderated forum until 30 September 2006. The discussion was down-loaded and then analysed. A thematic approach was adopted as a means of identifying common concerns amongst submitters, as well as recording other themes.
The dialogue was initiated by the posting of 14 questions/comments. The topics included:
- About Human Embryo Research
- Cultural issues around human embryo research
- Developing the online forum
- Talking embryos public seminar feedback
- The ethical and legal status of human embryos
- What are the benefits to society of biomedical research?
There were 35 threads and a total of 252 comments. The most popular topics were:
- About Human Embryo Research
- The ethical and legal status of human embryos
3 Analysis of the online discussion
Some of the themes were those initiated by the questions/comments posted by the administrator, but there were a number of additional themes that emerged and are reported on separately.
This analysis of the online discussion was undertaken by the Bioethics Council Secretariat. It includes selected comments made by participants which are shown in italics to demonstrate their reasoning.
a) About Human Embryo Research
For those participants who believe that an embryo either has a right to life or the status of a person from the point of conception, any research that would destroy or harm embryos is wrong. Consequently, for them there was little space for deliberation on the topic.
Some were concerned about the flow on effect within society should embryo research proceed.
I am concerned about the direction that New Zealand society may head towards in the future if it comes to be considered ethical to use human embryos for research in this country.
For some participants, human life starts at conception but for others, human life begins once the embryo forms into a foetus that resembles a baby. Some took a gradualist viewpoint with embryos deserving of greater respect as they develop. Others felt that personhood was not achieved until the unborn child was viable and some felt sentience was the essential factor.
For participants who had not yet adopted established positions there were a variety of relevant factors which influenced whether embryos should be used for research, including:
- The purpose of the research. Some balanced concerns about destruction of embryos against the potential to prevent, treat or cure diseases that cause much suffering.
- Some suggested that they would not support research was frivolous in nature: because someone wanted a blue-eyed child.
- Some suggested that the likely benefits of the research have been oversold and even if they do eventuate this will not be for many years. Other said this was no reason to stop the research: Just because treatments are a long way off doesn’t mean the research to develop them shouldn’t be undertaken (if anything it suggests we should get started sooner).
- Some considered that as IVF embryos cannot be stored beyond ten years it is better to use them for the possible benefit others than to simply allow them to perish: The embryos that would be used for this research would get thrown out anyway. The embryos either get destroyed by a lab person after they have been left in the fridge for too long, or they are destroyed as part of research that could help treat people’s diseases.
- Some thought that the couple whose gametes were used to produce the embryo should decide.
b) The Ethical and Legal Status of Embryos
For some people this was a straightforward topic because they asserted that as an embryo is a human life it must always be wrong to destroy it for research, even if there may potentially be benefits to others:
…a human embryo is a human life, this isn't something some people 'believe', it is a biological fact. Once the two halves of the human genome combine, a new individual with its own unique dna exists, and organised development begins. Ask any embryolist.
It was suggested that New Zealand should follow the model of Italy and prohibit the storage of unimplanted embryos, but this was countered with the comment that:
… that would mean a new series of ovulation drugs and IVF (OF ONE EGG) for each cycle the woman needs until she gets pregnant. The ovulation drugs can be dangerous for women if overdone, with side effects
Others felt that the issue was more complicated than just saying that an embryo is a human life and that tradeoffs must be made between the expected benefits of the research and the value of an embryo:
The issue could be reframed as follows:
What are the reasons we oppose unnecessary destruction of human life, and are these reasons applicable to embryos?
Then we might say an embryo is a human life, but not the kind of life which requires the highest level of legal protection. Or we might say that an embryo is deserving of legal protection, even if it is not a human life. The "human life" question is no longer important.
…..The starting point in the embryo research debate must therefore be an assessment of the expected benefits of the research. Until this is done, there is no way to draw any valid moral conclusion about the destruction of the embryos.
Others felt that the important aspect was consciousness and as embryos have no capacity for consciousness they do not need to be protected:
Since the embryos made available for IVF programmes are so young for there to be no brain, I don't believe there is consciousness there. For me, it's the presence of consciousness in this human flesh that is worth defending.
It was suggested that as human life is wasted in other contexts it is acceptable to destroy embryos, especially if there is a potential scientific advantage:
We destroy human life, at all ages from conception to old age. We have a wide variety of ways and circumstances including euthanasia, manslaughter, murder, capital punishment, suicide, war, terrorism, industrial and transport deaths, extreme violence perpetrated within families and communities, infanticide, abortion and the one we are concentrating on - embryonic destruction for research. Different sets of these are sanctioned or tolerated by different societies, mostly with conditions.
Others argued that this argument was unsound.
c) Embryo research vs abortion
One thread was titled “embryo research vs abortion” however very few participants considered abortion at all. Rather they focused on the point at which personhood exists with views ranging from the point of conception through to birth (as above). Concern was expressed that as abortion has become normalised over time, destroying embryos for research could also become routine over time. There was discussion about what makes us human and two suggestions were:
- Capacity to reason
- Being able to live independently of another organism.
One participant suggested that as abortion is legal under certain circumstances and embryo culture is okay up to 14 days that these lead to the view that it: …seems that these examples indicate a public and legal acceptance of embryos having lesser rights than humans up to this stage.
For some participants the treatment and source of the stem cells is more complex and problematic than focusing solely on the nature of embryo. The dominant discussion for this thread was around the source of stem cells, either embryonic or adult stem cells, and the treatment of the stem cells (see below).
d) Intention
There was discussion about intention- with some participants arguing that if IVF was undertaken with the intention of creating a baby it is wrong to subsequently use the embryos for research:
I think NZ IVF embryos were created for a specific purpose, a life within the context of family, and should be used for no other purpose. The simplest analogy is what the Privacy Commissioner said recently: that data collected for a specific purpose should not be used for any other purpose.
Others queried why the intention could not change as circumstances change:
Why would it be morally problematic to use something for a purpose that it was not originally intended for?
This discussion did not develop further.
e) What if the research did not destroy the embryo?
For some participants the destruction of embryos for research was unacceptable. They discussed whether it would be different if the embryo was not destroyed and was able to be successfully implanted into a woman after having cells removed for research. There was some discussion about whether the reported research was valid, as it had eventuated that the embryos used in the particular research had perished. It was suggested that such processes would only be acceptable: if the risk of damaging the embryo is non-existent or negligible.
There was no discussion as to whether it would be ethically acceptable for parents to agree to have one or two cells removed from an embryo for research use as (in contrast to PGD to diagnose a genetic condition) the process would not benefit the future child.
f) Why not use adult stem cells?
There was debate and sharing of various references giving differing views as to the success to date of therapies using adult stem cells. Participants with moral objections to destroying embryos were enthusiastic about research using adult stem cells.
Adult stem cells are more differentiated, more predictable and therefore safer as we know from 35 years of bone marrow transplants
Participants who argued for adult stem cell research used the lack of success from embryonic stem cell research as justification to use an alternative source. It was recognised that adult stem cells cannot do everything that embryonic stem cells can do, but it was suggested that on the other hand they are less likely to be rejected and form tumours.
Embryonic stem cells can’t be used directly because they form tumours, some with hair and skin and teeth in the animal models. There aren’t any reputable clinical trials in humans for this reason.
Adult stem cells have some great advantages over embryonic cells in that they can be collected from the person who is needing treatment so obviating the need for rejection worries.
Those who support embryonic stem cell research argued that embryonic stem cells are pluripotent and therefore better able to develop into wide ranges of cell types in the human body.
Participants who contributed to this thread clearly favoured spending research funds on adult stem cell research rather than embryo research. However, one suggested that both types of research should continue:
I think a variety of approaches should be used in trying to find solutions for different diseases. It is diversification of your investment because no one really knows in advance which business or scientific idea will produce the best results.
g) Justifications
It appeared extremely important for many of the people who took part in the online discussion to see evidence/research from journals, articles or other sources as support for their viewpoints, for example, when discussing whether scientists should use embryonic or adult stem cells for research most participants provided research from online journals or the internet to support their positions.
This suggests a heavy reliance on scientific and medical research as providing the answers to this debate. Few contributors provided any detailed analysis for an improved dialogue process, but there were obvious tensions between those who believed that we should rely on “scientists and experts” for information and those who believed that a system dominated by scientists was undemocratic or biased.
h) Maori view of Human Embryo research
There was virtually no comment about Maori views about human embryo research. This may suggest either that online dialogue is not appropriate to encourage Maori participation or that there has been insufficient provision of information and korero undertaken to allow Maori to work through the issues.
i) Spiritual debate
There was discussion about the diversity of views held by different religions and cultures. As this discussion led to an impasse, it was suggested that as any form of legislation is likely to offend some groups, the better approach is to leave the decision to the individuals concerned. Thus, those for whom embryo research was spiritually unacceptable could decide not to participate by refusing to allow their embryos to be used for research and/or declining to use any treatments derived from the research.
I am quite happy to let Christians believe what they want, as long as they do not foist their views on myself. However, many, many Christians are not of the same view. They are not happy to let me hold my own views and express them in how I choose to live my live. They want to foist their views, their values and their ways of life on me, by passing laws which force me to behave in ways acceptable to their (non-existent) God, but not necessarily to myself.
It was also pointed out that one can be opposed to embryonic stem cell research on purely philosophical and scientific grounds, without religion having to even enter the discussion.
j) Cloning
There was very little discussion about cloning, but the comments that were posted referred to the research problems in Korea. It was suggested that cloning should be banned and the participants did not distinguish between reproductive cloning and the use of cloning to create embryos for research.
k) Payment of donors
Most participants were of the view that donors should receive little or no payment to avoid money being an inducement:
… the amount of money could be attractive to at-risk demographics and those in the worse-off groups in society (which also raises significant cultural issues).
However, reimbursement of expenses was generally accepted. There was concern that payment could lead to a trade in organs which could raise the cost of research and medical procedures and put a price tag on the human body, which some saw as being disrespectful.
l) Who should make the decisions?
Throughout the various threads and discussions there were a number of consistent issues. One was who should make the decisions about whether to use embryos for research. Some participants argued that the research community should have the discretion to use unimplanted IVF embryos for research; others argued that the individuals providing the gametes should have absolute autonomy.
Using left over IVF embryos for research means that the parents have to decide which of their embryos they want destroyed - rather than just leaving them.
I don't see legislation easing the burden on parents - sooner or later they have to face the reality of choosing between their embryos. It sounds as though it's going to be complicated.
Most agreed that these decisions affect society, but they were divided about the ways and reasons. What is clear from the discussion is that it was acknowledged that decisions have to be made at some point and that the nature of these decisions varies. They could be policy decisions, legislative decisions, individual decisions or research decisions.
The only solution I can see is for a panel to review the various opinions and then make a ruling as to how research will proceed, if at all. Providing the panel had the confidence of the community I believe the decision would be accepted albeit reluctantly by those who lost out on their view.
There was some discussion about how the views of people with strong religious views can be adequately respected in a secular society. Generally, it was believed that everyone is entitled to their own opinions.
A secular society does not declare that religion is irrational. Instead, it gives people freedom to believe what is rational to them.
Prohibition on stem cell research is wrong as it is shoving someone elses religion or ideology down the throat of someone who believes otherwise.
Participants engaged in a detailed discussion about theories of knowledge, which led to concerns that the views were irreconcilable:
I do not think we can agree on anything - I do not think we have any common ground. I am completely at a lose as to how this can be resolved. This is a problem.
The dialogue then returned again to discussions about whether an embryo is a person or has a right to life. Recognising the circularity of the conversation one participant proposed a way forward:
If we are instead looking for some form of politically implementable solution it would be better to look for the points of commonality (which I'm thinking is the part of the purpose of these forums) and create a position from there.
m) What are the benefits to society of biomedical research?
When addressing the question posed by the administrator: “Is there a need for human embryo research?” participants returned to the idea that adult stem cell research should be pursued in preference to embryonic stem cell research because it is ethical less complex, there are less problems with rejection, less chance of the cells producing tumors.
There were concerns that the demand for embryos might grow:
Based on the current failures of embryonic stem cell research, it would be foolish to suggest that the currently frozen human embryos would actually last that long in embryonic stem cell experimentation, if it was legalised. Once those frozen human embryos run out, do we really believe that experimentation on human embryos will just magically stop happening? Of course it won’t - and once you’ve legalised the destruction of human life in scientific research then it’s going to be nigh on impossible to stop law changes that will allow for the creation of human embryos purely for destruction in scientific research. In fact; in other parts of the world researchers have been seeking permission to clone human embryos so that they can destroy them to extract the stem sells from them.
In regards to embryo farming; if a cure was ever found for a serious disease using embryonic stem cells, where are all the embryos going to come from that would be required for the continued production of the actual cure (which would be dependant upon a continued supply of embryonic stem cells)?
There were also concerns about the commercialisation of the research, particularly if embryos were needed for the production of treatments:
It’s naïve to think that bio-tech wouldn’t want to create and farm human embryos. After all; if a cure was ever found for a serious disease, using embryonic stem cells, then human embryos would become a financial cash cow for them.
Some participants were concerned that investing in human embryonic stem cell research may result in restrictions on spending in other areas:
I'm not convinced that we need (in NZ) to be pouring huge money into something that is always going to be controversial when there are other things we need to be spending money on
There was concern about the motivations and interests of researchers, particularly from participants would believed that research using adult cells holds more promise than research using human embryonic stem cells.
4 Conclusions
The online dialogue provided an opportunity for a relatively small number of people to express their views about human embryo research. A far greater number of people read the dialogue but did not participate.
The dialogue tended to be more in the nature of a debate than a deliberative process. In order to deliberate, participants would have needed to be willing to adopt new positions in response to the dialogue. It was clear that some participants had established positions and they saw their involvement in the dialogue as an opportunity to persuade others of the validity of their views.
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