The Medical Research Council (MRC), following a recommendation from the Chief Medical Officer, has taken the lead in establishing a national Stem Cell Bank, which is hosted by the National Institute for Biological Standards and Control (NIBSC). The objective of this consultation was to understand the views of the public and in order to inform the communication activities of the MRC and the Bank, mainly with those likely to be asked to donate stem cells but also with the wider public.
This consultation exercise comprised:
- a consultation forum with a cross-section of experts;
- two groups of men and two of women “who are blood donors or who carry an organ donor card or intend to leave their bodies to medical science”;
- one group of men and one of the women ‘non-donors’ who were not blood donors, did not carry an organ donor card or intend to leave their bodies to medical science
- one group of men and two groups of women who had successfully received in-vitro fertilization (IVF) treatment; and
- one group of men and two groups of women undergoing in-vitro fertilization (IVF) treatment.
The 12 focus groups were run in eight English towns. There were between three and ten participants in each group. The groups were run in the summer of 2002 and the spring and autumn of 2003.
We distinguish between potential donors, which includes virtually everyone, and likely donors, that is, people in situations where they are likely to be asked to donate.
Views on stem cell research
Generally, the non-IVF participants accepted the use of embryos at a very early stage of development. However, people who had received IVF treatment had quite different views of embryos; the women, in particular, viewed embryos as babies and their frozen embryos as potential siblings for their existing children.
The creation of embryos for research was generally rejected, whether this was by IVF procedures using eggs and sperm or by cell nuclear transfer (CNT). CNT was viewed with great suspicion, despite the potential for compatibility with patients. It was recognized as cloning by many participants and there were a general fear and dislike of human reproductive cloning.
Obtaining stem cells from aborted fetuses was, for many people, more acceptable than creating embryos for research, providing the decision to abort was made separately from the decision to donate the fetus for research. Some participants felt that the donation of the fetus might bring some comfort to those in a very difficult situation.
Some participants found it difficult to engage with the idea of research, finding it easier to focus on therapies. As previous work has established, there was general support for the benefits offered by advances in healthcare but this was balanced, to some degree, by concerns regarding adequate control of research.
Concerns about private sector users generating excessive profits were particularly prevalent in the IVF groups, where some participants had paid for their own treatment. However, there was widespread recognition that the involvement of the private sector was unavoidable in the development of medicines.
It was explained that stem cells would be turned into lines, that is, grown in culture so that they continue to divide and that the line will therefore be immortal. Some participants reacted to this description of the cells as “immortal” with unease, partly because of concerns about what might be done in the future.
The complex and invasive procedure required for the donation of adult stem cells meant that participants did not regard this as a likely source. They felt that they would be more likely to donate for therapeutic reasons than for research. Taking stem cells from the brains of cadavers was seen as acceptable if the person had given consent during their lifetime. Several groups recommended that this be added to organ donor cards.
It was generally agreed that donors should not be paid for donations, although the invasive nature of the procedures led to discussions of in-kind payments such as time off work or sick pay. Some of those who had received IVF treatment perceived that the IVF clinics saw their relationship with the “patients” as fundamentally commercial in nature.
There was a strong desire expressed by several participants across the focus groups, to be able to specify the diseases for which “your” donation would be used. The difficulties in enabling this were dismissed by many participants.
Our findings suggest that members of the public are not likely to be stem cell donors unless they find themselves in particular circumstances. This report shows that for those who are likely donors, the option of the donation will be associated with traumatic periods of their lives. This amplifies the role and responsibilities of intermediaries (those who raise the issue of donation and gain consent from potential donors). The MRC and the Bank should, therefore, continue to build relationships with intermediary organizations and to develop material for likely donors in partnership with them.
Management and oversight of the Bank
The main benefit of a central Bank was seen to be the control it offers over the uses to which the stem cell lines are put, who has access to them and the objectives of the research conducted. Given that there is some ambivalence towards the actual conduct of this type of research, this provides reassurance both to the general public and to likely donors. Transparency was seen as the fundamental basis upon which management and control systems should be built.
Participants wanted to see clear lines of ownership and responsibility with accountability to some form of oversight body that was independent from the Bank and the “users”. Participants felt that the sanctions for breaking the rules should be severe enough to deter individuals and organisations from doing so.
There was great concern amongst the donor and non-donor groups that only researchers and clinicians working on “serious” or “life-threatening” diseases and illnesses should have access to the Bank. Some of the IVF women also wanted to ensure that the Bank played a role in supporting infertility research.
Participants saw a trade-off between the need to draw-in private sector investment to yield medicines and therapies, and allowing excessive commercial exploitation of a national resource provided by donors. Ultimately, private sector companies must be willing to be open to the same levels of scrutiny as academic researchers. It was also felt that some element of the profits made from any treatments developed should be re-invested in the bank to support further research or to support treatment.
A full report of the findings will be available on the MRC website.