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Engaging patient groups in the debate on stem cell research

Dr Sandrine Soubes
Facilitator, Centre for Stem Cell Biology, University of Sheffield

Way Ahead 2006;10(4):6-7

Introduction

I was invited by the MS Trust to run a seminar session on stem cell research at their Annual Conference in November 2005. I work for the Centre for Stem Cell Biology (CSCB) at the University of Sheffield, which is a centre of excellence in stem cell research. We were one of the first UK laboratories to develop embryonic stem cell lines from human embryos. We are at the forefront of developing patient therapies and have just finished building facilities that will allow us to produce stem cells under Good Manufacturing Practice (GMP), which is a requirement for clinical grade tissues and for cells to be used to treat patients.

However, our research is still very much in its infancy when it comes to regenerative medicine. Yes we can grow human stem cells in a dish, but these cannot be used to treat patients yet. There is a clear discrepancy between what we are actually able to do in the laboratory and the expectation from patients of what stem cell therapy is already available. Our research centre receives numerous calls and letters from desperate patients such as those with heart failure, sterile couples, diabetics or individuals with spinal injuries to name a few. The worrying part of these calls is the almost blind willingness of many of these patients to enter clinical trials. Although some trials have been run in other countries and laboratories, our level of understanding around the manipulation of these cells for therapy is still far from allowing widespread clinical trials.

Surveys on patients' understanding and views on stem cell research were conducted during the 'Patient Conference on stem cells' held in Brussels in December 2005, which was organised by the European Federation of Neurological Associations. The results of this survey indicated that there was strong support for stem cell research in general from the participants in the conference, with 71% supporting stem cell research. However, 85% of conference participants felt that patients and patient organisations were not sufficiently involved in the debate on stem cell research. This is what the session organised during the MS Trust Conference tried to address, by directly involving a patient organisation in an open discussion on stem cell research and its many sensitive issues.

Conference session

The workshop session during the conference, which was attended by health professionals, was run with the help of Julie Askew, a freelance science communicator and former member of the CSCB, and Holly Else, an undergraduate student from our Department of Biomedical Sciences. Initially, I was hoping to run the session with more stem cell researchers to facilitate the discussion. Unfortunately, I was unable to recruit more members of our department for the trip to Blackpool - although a lot of stem cell scientists are aware of the need for public engagement, there is still a reluctance to get involved. Whether this is because of time constraints or worries about the perception that members of the public might have about their work remains to be determined.

I started the workshop with a brief introduction on the basics of stem cells, what they are, when and where they can be found, and what we can do with them. The main part of the session was devoted to a group discussion amongst the participants using the Democ discussion tool.

The Democ game

Democ, which stands for 'DEliberative Meeting Of Citizens', was developed by The New Economic Foundation (NEF), with the support of the Wellcome Trust. NEF is 'an independent think-and-do tank', which aspires to engage citizens in public debate. Democ is part card game, part policy-making tool and enables small groups of people to engage with complex public policy issues. During the session we were able to run seven Democ games on stem cell research, with around six to eight participants per table. The game starts as follows:

One participant from the table deals one 'story' card to each person. The discussion is initiated with the shared reading of 'story' cards. The 'story' cards put the stem cell debate in context. They give a brief description of someone who has encountered stem cell research in one way or another. The strength of the cards is that they make things personal, for example, one card describes Mrs Liz Hopeful who is undergoing IVF treatment and has been asked if she will consider giving her 'spare embryos' for stem cell research. Another card describes the point of view of a Catholic priest, whilst other cards describe the point of view of a stem cell researcher or describe the case of a Parkinson's sufferer.

The dealer then deals out the 'information' cards. These cards explain some of the basic principles around stem cell research, such as:

  • where human stem cells can be extracted from;
  • the 14 day legal limit for embryo research;
  • what a cloned embryo is;
  • the role of the Human Fertilisation and Embryology Authority (HFEA).

Participants choose two information cards and read them out. Participants can choose their cards for different reasons, either because they believe it is important information, because they do not understand the information given and want to discuss it with the group, or for any other reason. A discussion follows where participants explain why they have chosen their cards and other participants comment on them.

A new set of cards is then dealt - the 'issue' cards. Again participants choose and discuss their cards with the group. The 'issue' cards allow the group to explore the many avenues in the ethical debate surrounding stem cell research. Topics such as:

  • the moral status of the embryo;
  • the cost of research;
  • the risk of early clinical trials;

and many more are discussed.

Participants are then asked to answer some 'challenge' cards if they wish. They give their comments/answer to the group. Some of the 'challenge' cards are:

  • does this have an impact on nature?
  • what do you imagine your grandparents would say about the topic?
  • tell the group what you think the media would make of all this.

A major aspect of the game is to take part in a vote on the issues that have been presented. The participants must first group the cards that were chosen to try to identify the 'big issues'. Then four policy positions are presented and participants can vote, they can also suggest a new policy position.

The results of the votes are gathered by NEF and used to inform policy makers. NEF has now introduced a new system where a group playing Democ can upload the results of their vote directly onto their website.

Conclusion

I believe that the use of an activity such as the Democ game is an extremely successful tool to get people started on discussing a topic they may only know a little about. I have used the Democ discussion games with very varied groups, for example, during the Café Scientifique that I organize in Sheffield, with women's groups and pupils from schools and colleges.

What was particularly interesting in participating in the MS Trust Conference was the direct relevance that the topic had to the participants. It was not just a theoretical discussion - the participants were health professionals who have to advise patients. The strength of these small group discussions is that they allow people to understand more about the basics, but also gives them time and a safe space to express their views. Also, because the results of their votes are available to policy makers, people may feel that it gives them a chance to have their views heard.

The Democ stem cell game can be downloaded for free from the NEF website and can be played without an expert facilitator. However, I feel that using a facilitator might help push the discussion further. I am extremely keen to carry on facilitating small discussion groups using Democ, or other modes of engagement, with other patient organisations. There is too much hope and hype about stem cell research, so this sort of workshop will help patients and stem cell researchers build partnerships and understanding.

If you are interested in running some of these discussions with our help, please do contact me at: s.soubes@virgin.net.

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