Attitudes to Embryonic Stem Cell Research in New Zealand

February 2006

1. Introduction

This report is prepared for Toi te Taiao: New Zealand’s Bioethics Council as background for its response to the Ministry of Health’s proposed guidelines to allow scientists to import embryonic stem cell lines from overseas. Many countries around the world have introduced and passed legislation to regulate or even ban stem cell research. This legislation largely focuses on embryonic stem cell research.

The report is informed by a set of focus groups conducted to canvas participants’ views about stem cell research in New Zealand and the potential importation of stem cells and/or stem cell lines derived from human embryos. Eight focus groups were held (54 people in total) with the intention of scoping out the range of views. Given the small number of focus groups, the research does not aim to attribute particular views to particular groups of people. The focus groups included young parents, retirees, Māori, Pacific people, mixed groups, young people and rural residents.

Stem cells are cells in the human body that have the ability to continuously divide and develop into different kinds of tissues. Research using stem cells is a relatively new area, with future applications anticipated to include triggering stem cells to transform into specific cell types that could be used to repair diseased or damaged tissue (e.g., to treat cancers, spinal cord injury, heart disease and neurological disease).

Stem cells can be obtained from a number of sources including early embryos (that is, 5-8 days old), foetuses from terminated pregnancies, umbilical cord blood, adult (that is, post-birth) tissues, and a form of cloning. Those derived from human embryos are the easiest to isolate and manipulate and can also create any type of human cell (i.e., they are totipotent).

Stem cells taken from embryos, typically those remaining at the conclusion of in vitro fertilisation procedures, and replicated indefinitely are called stem cell lines. They are important to researchers as a source of stem cells for experiments. However, there is debate about the ethics of creating embryonic stem cell lines, because they involve the destruction of a human embryo. To date no research using embryonic stem cells has taken place in New Zealand.

2. Focus group background information and questions

Focus group participants were sent a brief set of facts about stem cells and stem cell research as part of their invitation to participate in this research. They were also given a reference to the Ministry of Health’s webpage in case they wished to access further information. They usually welcomed the extra information they were given at the close of the focus group discussion.

The set of facts are listed:

• Human embryonic stem cells are cells taken from embryos that are 5 to 8 days old.
• Stem cell “lines” can be developed by growing these cells in a laboratory. These cell lines can be frozen for storage or distribution to other researchers.
• Stem cells cannot develop into a human being.
• Stem cells are used in research with potential to develop therapies for conditions such as Alzheimer’s disease and spinal cord injury. It is likely to be several years before such treatments are available.
• Embryos that have stem cells removed are not implanted in a woman because of concerns that they may have been damaged.
• The possible sources of embryos for stem cells are:
  • embryos from in vitro fertilization (IVF) which will not be implanted in a woman;
  • embryos created for research using eggs and sperm from donors;
  • embryos created for research by a form of cloning.
• So far no research using human embryonic stem cells has taken place in New Zealand.
• Scientists want to import established human embryonic stem cell lines into New Zealand, initially for use in basic biological research.
• In the future they may also want to create stem cell lines in New Zealand using embryos from one of the sources above.

The focus groups were held in the Wellington and Manawatu Regions and began with a brief discussion of the facts as outlined above to ensure that all participants shared some common understandings of the topic to be discussed. The focus group discussion then proceeded around a set of questions set by the Bioethics Council.

These questions are also listed:

• What is your immediate response/reaction to stem cell research?
• What do you think about the use of embryos to source the stem cells?
• Do the possible benefits of the research justify the destroying of embryos?
• Do you have different views about stems cells being taken from:
  • IVF
  • Donor embryos
  • Cloned embryos
• Who should make the decisions about what is allowed? For instance, what about left over embryos from IVF when the parents cannot be found? What should happen to them?
• Does it matter whether the embryos (from which stem cells are sourced) or stem cell lines are created in New Zealand or overseas and imported into New Zealand?
• Would it be better to put the resources into adult stem cell research – even though they have less potential to differentiate?
• What should the stem cells be used for?

The following sections of the report summarise the sets of views emanating from the focus group discussions. While we provide some reference to the sources of some of the views, given the small number of focus groups, it would not be appropriate to extrapolate from these to assume that other similar groups might share similar views.

3. Views about embryonic stem cell research

The views of focus group participants are grouped into four general themes that reflect the questions asked. These general themes are:

• General responses to stem cell research
• Preferred sources of stem cells and stem cell lines
• Decision making around extraction of stem cells
• Research activity.

3.1 General responses to stem cell research

The difficulties we faced in organising focus groups may not be entirely due to their proposed timing immediately prior to Christmas and in the holiday period following. Often focus group members reporting having little, if any, previous knowledge of the topic other than having some recollection of news stories such as the woman going to China for stem cell treatment for a neurological condition. Some people said they were attracted to attend the focus group discussion because it would provide them with the opportunity to find out more about the topic. A few did some preparatory research: for instance, one woman came to a focus group with a set of questions and some printed material about potential risks from stem cell treatment.

It is reasonable to assume that people coming to focus groups may have a greater interest in stem cell research than the general population. There is a self-selection process involved in focus group membership, as people can choose to respond to an invitation to participate or not. With one group there was less of a self selection process: the group of young people came from a single work place and comprised the entire shift for that day. Of that group, only one person had heard of stem cell research or stem cell based treatment prior to the group invitation.

Participants often found it difficult to make the distinction between stem cell research and stem cell based treatment. We had to keep reminding individuals in the group discussions that treatment may be ten years away. For instance, when talking about the ethical issues relating to stem cell use, or the potential risks from use, participants often assumed that the proposed importation of stem cell lines was for treatment. Sometimes, their concerns were dissipated when they were reminded that the potential importation of stem cells or stem cell lines to New Zealand would be for research purposes at this stage not for any medical application.

Often participants were reticent at the beginning of the group discussions. They seemed to find it easier to respond to specific questions about aspects of stem cell production and use than to a question about their general response to stem cell research. Usually there was one person in each group who commented that they did not know enough about stem cell research to have any definitive views or to comment. They felt that they needed more information and more time to reflect on it. Sometimes their comments motivated the rest of the focus group to stress the need for public education about stem cell research and its possible applications. Their comments reinforced our sense that many people in New Zealand are not aware of or familiar with stem cell research and that an education campaign is necessary if public comment is wanted.

Of those who were comfortable with articulating some general response to stem cell research, their views varied. Some were expressed an instinctive distrust or dislike of the idea of the research, some were ambivalent (for instance expressing some reservations at the same time as anticipating the benefits) and some were completely accepting of the use of stem cells and enthusiastic about possible applications. The initial responses can be grouped into four general areas (as listed below) and are discussed in more detail in the rest of the report:

• Previous experience tells us there are health and safety risks associated with new areas of research and application and, therefore, we need to proceed with caution, especially when we are dealing with human health.
• Some sources of stem cells are more preferable than others for ethical and risk management reasons.
• Ethical issues relating to matters like when life begins, whakapapa, and consent make such research unacceptable or only possible with stringent guidelines.
• Science and research is valuable of itself and New Zealand needs to pursue new avenues of research, especially when there are potential health benefits.

3.2 Preferred sources of stem cells and stem cell lines

The range of views about preferred stem cells sources, which are described in more detail below, includes the following:

• Extracting stem cells from surplus IVF is acceptable because they would otherwise be destroyed.
• Extracting stem cells from donor embryos is acceptable because they are created for such a purpose.
• Any source of stem cells is acceptable, given the potential benefits of the research.
• Extracting stem cells from human embryos, however they are produced, is unacceptable because human life begins at conception.
• Extracting stem cells from human embryos surplus to IVF procedures is unacceptable because the intention behind their production is to create a life.
• Cloning embryos for stem cells is unacceptable, in the same way that any cloning is unacceptable.
• Stem cells should be sourced from New Zealand, to both ensure that the process is ethically defensible and to enable risk management.

Most groups stipulated that there should be no financial incentive for donating embryos for stem cell research.

Extracting stem cells from surplus IVF is acceptable: The majority of participants felt that the use of surplus IVF embryos was acceptable, since they would otherwise go to waste. Some described them as “biological waste”. For these people, using surplus embryos for research that could lead to better health outcomes was better than destroying them. For most people, use was contingent on appropriate consents (discussed in Section 3.3).

If the [embryos] go on to be implanted, that’s good. But if they’d just end up in the medical waste-bin, that’s a waste – they might as well use them.

Extracting stem cells from donor embryos is acceptable: Some participants preferred extracting stem cells from purposefully produced donor embryos rather than those surplus to IVF procedures. For them, the intention behind the production of embryos should define their use, even if the actual process of production is exactly the same.

Some participants were equally happy with stem cells sourced from IVF or donor embryos.

Sourcing stem cells through some form of cloning is acceptable: One participant felt strongly that the use of cloning for producing stem cells was preferable because this process was furthest from the intention of creating human life. Both donor and IVF embryos could potentially create a person while, presumably, the cloning process is not intended to.

Any source of stem cells is acceptable: A number of participants considered IVF and donor embryos equally acceptable as sources and a few thought a form of cloning as equally acceptable. For them, the importance of the research justified the method of stem cell extraction or production so long as appropriate consent is given and safeguards are in place.

Extracting stem cells from any human embryos is unacceptable: Usually a small number of participants in any focus group rejected the extraction of stem cells from any human embryos for research. Their view was that human life begins at conception and, therefore, embryos are people and their destruction is unethical (in the same way that abortion is unethical). Sometimes people making this point pointed out the dilemma they faced in having this view, given the health problems of friends and relations or their own life experience (as some of the quotes below illustrate).

My sister has MS and I would love it if she could walk again – but I still feel uncomfortable with destroying a life for a life.

I would have been prepared to have an abortion when I was young but now I am more aware of the preciousness of a life. An embryo is a life – or could be.

I don’t like it because you have to destroy something that is potentially human.

The end doesn’t justify the means.

Others pointed out that taking stem cells from an embryo goes against whakapapa, in the same way that donating organs and giving blood are.

Your tinanga mixes with their wairuatanga.

Extracting stem cells from IVF surplus embryos is unacceptable: Because extraction of stem cells from surplus IVF embryos for research purposes leads to their destruction, this process is unacceptable. The research use is inconsistent with the intention behind the production of IVF embryos: they were produced to create a life. For these people it is preferable to destroy these left over embryos after a prescribed period.

Cloning embryos for stem cells is unacceptable: Most focus group participants expressed discomfort with the idea of cloning embryos for stem cells. The reasons for this included a general distrust of cloning, which sometimes reflected their general mistrust of science, and concerns over deterioration of cloned products (as evidenced by the early death of Dolly the sheep).

Stem cells and stem cell lines should be sourced from New Zealand: Almost all participants expressed a firm preference for sourcing stem cells and stem cell lined from New Zealand only. Their reasons for this preference had to do with ethical and quality considerations. For instance, by sourcing them in New Zealand, in the context of well developed guidelines and consent processes, we could ensure that donors had given informed consent. We could also obtain better information about the health and genetic characteristics of the donors, in case these are important to the safety and efficacy of any experimentation and applications. Here are some typical concerns:

Until there are consistent policies in all countries maybe we should avoid importing.

I have a problem with stem cell research importing lines from overseas. I feel very strongly the lines should be from New Zealand. We have no idea about the screening processes and diseases in other places.

Participants who accepted that stem cells and stem cell lines may be imported from other countries outlined various conditions that they would like imposed to protect New Zealand’s interests. First, New Zealand should source stem cells and stem cell lines only from countries that have similar ethical, health and safety procedures as New Zealand. A number of people also noted that they would feel more comfortable with sourcing stem cells from countries with low rates of particular diseases, especially HIV.

We need to make sure that the embryos’ countries of origin have the same ethical conditions as us. There needs to be some protection.

Only one or two participants preferred external sources for sourcing stem cells and stem cell lines. They liked the idea of distancing ourselves from the ethical considerations inherent in extracting stem cells from embryos:

People might like the idea because it removes them from [feelings of] guilt. They’re sourced from over there, not here.

3.3 Decision-making around sources of stem cells

Focus group participants who agreed that it was acceptable to extract stem cells from embryos, whether donor or surplus to IVF procedures, almost always considered consent should be mandatory. The following discussion further specifies what consent might need to entail.

Participants almost always argued that both donors (that is, donors of the eggs and sperm) would need to consent. One participant initially considered the consent of the female donor as the most important but soon changed her mind and argued for joint consent. Participants stressed that embryos should not be used as a source of stem cells if both donors cannot be located, or if only one gives permission. Some further pointed out that this requirement would still be required when IVF procedures involved donor eggs or sperm (that is, other than the couple going through the procedure). If the donor is unknown then consent is not possible and stem cells cannot be extracted.

People should have a choice as to whether they want to donate (from surplus embryos used in IVF). If they don’t want to, that should be okay.

Donors should make the decision, just like body organs.

Some focus group participants wanted to further specify what the consent process should entail and what the consent might cover. These further clarifications are outlined briefly.

Some people (usually at least one or two in each group) felt that it would not be appropriate to retrospectively seek consent to use the surplus embryos of IVF procedures that had already taken place. One reason for this relates to the purposes of the embryo creation. For those already created, the primary reason for their existence would have been to create a life (albeit with the understanding that the procedure may result in unused embryos that would be stored for a specified amount of time before being destroyed). These participants felt that consent should be sought from donors going through IVF procedures in the future (that is, from any time after any guidelines are finalised). Then donors would be giving consent for stem cells to be removed from embryos that have been created for a primary reason (creation of life) and a possible secondary reason (research). Participants argued that the distinction might be subtle, but that it is important.

Educate parents at the beginning of IVF treatment and get consent then, rather than trying to find them later.

A number of participants stressed the need for donors to be appropriately informed so that they could give informed consent. Some participants talked generally about information and some were more specific. In some ways, the participants viewed the information needs of the donors as similar to those of parents giving their children up for adoption.

A few participants also wanted to ensure that any consent sought covered only aspects of use specified at the time. So, the consent sought at one time would not cover unanticipated future use of embryos, stem cells or stem cell lines, even if the use still related to stem cell research. Itemised information included:

• where the stem cells or stem cell lines would be distributed (e.g., by institution or country)
• the credentials of the researchers (or research institutions) using the stem cells or stem cell lines
• the focus of the research (and possibly methods), and its possible applications
• the funding source for the research.

The following quotes illustrate participants’ concerns:

Once parents give permission, how can they control what [the embryo] gets used for? Parents don’t have a say once the embryo is out of sight.

What exactly are you consenting to?

Some participants’ views about the need for consent reflected their underlying mistrust of scientists and their motivations. The recently exposed Greenland baby heart collection (where consent been obtained to examine the hearts but not retain them) was raised at more than half the focus groups as evidence that donors need some control over researchers’ activities to prevent inappropriate exploitation of people. Participants wanted to ensure that exploitative research practices could not occur in the stem cell research area.

As participants emphasised, decision making about stem cell production and use is inextricably linked with considerations of ethics and safety. So, as participants reflected on their preferred sources of stem cells they also talked about the measures that would need to be in place to protect the interests of the donors and the New Zealand public. The risks they identified and suggested risk management responses are listed below:

• Participants in all groups wanted procedures in place to filter out potentially flawed stem cells. They attributed potential flaws to the time that the embryos from which they were sourced had been in storage; the donors’ exposure to disease (e.g. HIV); and genetic disorders of donors.
• They also wanted procedures in place to ensure that appropriate informed consent had been obtained from donors.
• A number of participants also wanted a ‘paper trail’ attached to all stem cells and stem cell lines used in research so that donors could always be traced. They were concerned about unanticipated effects of any future stem cell applications and future discoveries of disease exposure or genetic disorders and wanted systems in place so that donors and any recipients of future treatments could be traced.
• One participant with a legal background emphasised the need to protect the rights of donors in the event that drug companies made significant economic gains from the treatments developed.
• Participants felt that stem cells and stem cell lines would be best sourced in New Zealand to ensure the appropriate screening and paperwork is carried out:

Scientists need the freedom to be experimental but must have safety guidelines in place.

We need a good tracking system of where cells came from and who they went to.

3.4 Research activity

We asked the focus group participants two research-related questions: do the potential benefits of stem cell research justify the destruction of embryos and should research funding be directed to adult or embryo stem cell research? Often discussions went beyond these questions, for instance, to talking about research activity in general, both internationally and in New Zealand. In some cases the discussion was prompted by participants’ general concern about the direction of research activity and, in their view, its lack of responsiveness to societal needs. They tended to see science and technology in a deterministic way, with scientific progress shaped by the interests of drug companies and the scientists themselves. Other participants talked about the value of science to our wellbeing and economy and the need to maintain science capacity in New Zealand. The discussion is grouped under four broad headings:

• The comparative value of stem cell research
• A preferred focus for stem cell research
• Mistrust about research in general
• Maintaining research capacity in New Zealand.

The comparative value of stem cell research: Most participants supported the concept of stem cell research for its potential health benefits, including extending life and enhancing quality of life. The following comment was typical:

People wouldn’t be living longer if there wasn’t any research done. It has great potential.

However, there was not unanimous support for stem cell research. Some participants talked about equity issues arising from research effort devoted to stem cell research if it occurred at the cost of other research. They questioned whether stem cell research is the best place to direct health research funds, when there are other more pressing health-related issues, for instance for Māori, that need attention like the consequences of poverty.

Is it justifiable to spend money on new things when there are still existing health issues to be sorted out?

[Money should] be spent on basic primary health care first.

People also pointed out that that research focusing on areas like Alzheimer’s disease and other diseases associated with old age are more likely to benefit Pākehā than Māori, as Pākehā are more likely to live long enough to develop health problems associated with ageing. In their view, Māori would benefit more if stem cell research monies were redirected to research around diabetes and other diseases that are more prevalent amongst Māori. These focus group participants made a distinction between the value of research that benefits the old and research that benefits the young, and value the latter more.

Another equity issue related to possible differential access to stem cell-related treatments. One suggested future scenario was that more disadvantaged people might provide the stem cells for treatment that might be available to a small wealthy elite only. The donors might not afford the treatment themselves. They pointed out that Māori tend not to be recipients of ‘high end’ care.

Some pointed out the irony of research focusing on extending life (or the quality of life) when it required the destruction of a life (i.e., the embryo) to carry it out. They also questioned research that focuses on extending life beyond what might be ‘natural’. They felt that extending life could be seen as ‘unnatural’.

A preferred focus for stem cell research: While most people who supported the concept of stem cell research supported the sorts of research focus suggested in the handout material (e.g., potential regeneration of diseased or damaged tissue), others were more interested in using the research to understand how the human body works and how diseases work. They were less interested in research on how stem cells could be used in treatment.

Study stem cells to learn more about illness (how it works), not put them in people.

The majority of participants who supported stem cell research expressed a preference for the use of embryonic stem cells (because they are totipotent). But some promoted research using adult stem cells. Their reasons related to ethics as well as to the applications arising from the research. The two principle ethics considerations were the avoidance of any need to destroy embryos and the ease of the consent process: adults can give consent for removal of their own stem cells while embryos cannot (as evidenced by the quote below). Also, any treatments arising from adult stem cell research, especially if people’s own stem cells could be used, would not involve rejection problems to the same extent. The possible need for genetic modification of the stem cells used in treatment could also be avoided or reduced. Focus group discussions did not dwell on the possible application of genetic modification in future treatments, but a number of participants indicated that such a need raised a whole set of new concerns. For instance, one participant stated:

Tailor the stem cells used according to the disease being researched and bypass ethical concerns.

Participants believed that stem cell research should be used to cure diseases or replace damaged organs or tissue, rather than used for cosmetic reasons or inappropriate enhancement of human abilities. A number of participants referred to a recent news headline about women in Russian injecting stem cells for cosmetic reasons, noting their discomfort with the idea.

I’d like guidelines that state that stem cells are used to cure, not to create a superhuman.

Mistrust about science in general: A number of participants expressed their general wariness of science, especially that relating to what they saw as the fundamental building blocks of human existence. They associated stem cell research with other areas of health-related research that they had serious concerns about, particularly genetic engineering and cloning. Some of the concerns they had included the role of drug companies and the financial incentives behind research; misinformation to the public about research; and insufficient independent monitoring of research. Below are some illustrative comments:

It still comes down to who makes decisions about what it [stem cell research] does, who is it used for?

Perhaps you could specify that [stem cells are] only okay to be used for one purpose and not another, but how could you monitor whether the scientists are honouring your wishes or not?

Maintaining research capacity in New Zealand: In around half the focus groups, participants talked about the importance of maintaining science expertise in New Zealand. They stressed the importance of New Zealand ‘keeping up’ in the research world. The implication here was that if there were too many restrictions placed on stem cell research in New Zealand it would exacerbate the ‘brain-drain’ as scientists would leave New Zealand and work where there would be fewer restrictions. Participants also believed that there was a value in having the research carried out here as it allowed for better control of the potential ethical and risk management issues associated with the research. These comments are fairly typical:

We have good scientists here. The quicker we can get the process going, the earlier we can find out about treatments.

It’s better to import the technique and have it done here.

It’s important to talk about it and create guidelines rather than do it in secret.

4. Summary and conclusions

As we outlined in the introduction to this report, we suspect that the difficulties we faced in organising the focus groups might partially reflect a general lack of knowledge about and familiarity with stem cell research. In general, participants did not know a lot about stem cell research and we had to spend some time at the start of the discussion going over the set of facts included in the invitation to attend. There is a need for some public education about stem cell research and its potential applications. Usually one or two people at each group meeting could add more information, usually because they worked or studied in areas that gave them some understanding of the research area or, in a couple of cases, because they had done some research on the topic before attending the focus group. A few participants felt uneasy about responding to the questions because they felt they had not had time to reflect on the implications of the research and form firm views.

In general, participants were supportive of the concept of stem cell research, because of the potential benefits to human health. However, they were also mindful of the irony involved in needing to destroy potential life (embryos) to source the stem cells for the research. In general, though, they felt that the potential benefits outweighed any concerns about the destruction of the embryos and, anyway, that the preferred stem cell source would be destroyed in time.

Some people felt that the potential benefits of the research did not justify the destruction of embryos intended for life. For some, that meant that stem cell research could only proceed if alternative stem cell sources were used. For those who supported embryonic stem cell research, they most often preferred donor embryos because they would be created specifically for research. A few felt that there was potential in research using adult stem cells, and that this would overcome their ethical concerns. A small minority eschewed stem cell research entirely, mainly for ethical reasons or because it was inconsistent with whakapapa.

Almost all those who supported embryonic stem cell research thought the stem cells should be sourced in New Zealand. Their reasons related to a perceived superior quality of stem cells given a lower prevalence of some diseases; the appropriateness of using local stem cells for future treatments given the increased ability to match donor and recipient characteristics; and the increased likelihood that people could have confidence in the procedures put in place to ensure that ethical and safety considerations are taken account of.