What does the public think about stem cell research? The MRC and BBSRC have just finished a dialogue project to find out.
Over 200 members of the public and 50 stakeholder groups shared their opinions and revealed their support for both basic research and development of therapies. MRC Press Officer Laure Thomas went to UCL to talk to Stem cell scientist, Professor Chris Mason about the dialogue results.
LT: Why do you think it's important to speak to the public about what they expect from stem cell research? CM: I think it's important for a number of reasons to have a two way dialogue. I think it's very important that the scientists get their message across and equally important that the public has an opportunity to communicate with us as to how we spend our money and perform our research and hopefully deliver therapies in the future. LT: Were you surprised with some of the public reactions or opinions about stem cell research? Did you think they were fairly spot on as to what was happening or was there a time lag between what was going on in the science and the public's perception? CM: No I was very impressed in fact, with both the knowledge of the public and also their level of consistent support for the research we've been doing. And I thought it was extremely encouraging that they were keen to support not just the fact that stem cells would be for health, but for also wealth, for the creation of jobs in the UK. So in that respect I thought it was very refreshing but it was pretty much what I had expected.
LT: And how do you think the MRC should react as a funder, should it continue to fund the most excellent proposals that come to it or should it take heed of what the public wants and perhaps direct its funding towards what's most desired by the public? CM: I think it has to be a combination in the end. Clearly the public foot the bill and it's very important that we do deliver therapies into routine clinical practice that will benefit real patients. But at the same time it's also very important that we keep the UK at the forefront of stem cell research, so I think we need to do a combination of high quality research but very much bear in mind that the translation is also very important, that we do deliver on the science and turn it into routine clinical practice which will benefit patients. LT: And patients are very keen to see this benefit, I mean the dialogue seemed to portray the public as perhaps less risk averse than some of the regulators. How do you react when members of the public actively want to take part in the trials and the regulators say “Hmm, perhaps we're not quite ready yet” or the scientists have to say “ooh, this is still too experimental”. Where do you think the balance of risk should lie?
CM: This is a very difficult question. Clearly we need to deliver safe effective therapies to patients at a price that is affordable by the NHS; that has to be the number one goal. We need the regulators to ensure that we do have good safety and we do have good efficacy of these therapies when they're delivered and we need to be careful to not be carried away by enthusiasm for a new approach. But at the same time we need to move these therapies forward and it's very difficult treading a line between the two and really I think that for stem cells and stem cell therapies rather, we should really be talking about the risk benefit. So I think there's two bits here; we've got diseases, severe diseases which the public clearly support the use of stem cell therapies for and they will be the first indications which these therapies will be used. And I think we will learn a lot from these and that will then allow us to look at less severe conditions with a much safer product.
LT: You've gone on the record recently suggesting that perhaps there might be undue delays in the way that the area is regulated. To get from the bench to the clinic with some of these therapies, how do you think the UK's placed in 2009 to take stem cell research that step further? CM: Regulation is very difficult. What we need is something that delivers safe, effective therapies and clearly regulation is required to do that. The regulation also needs to be seamless; in the US everything is regulated by one regulator, the FDA. In the UK for something like an embryonic stem cell therapy, one would have to go through a series of different regulators starting with the HFEA, moving on to the Human Tissue Authority, then onto MHREA and GTAC and then for final regulation through the EMIA to actually get it out as a licensed product. Now there is potential there to drop the baton so to speak, as you move from player to player and for delays. And I think it does need a guidance, certainly to researchers, as to how one goes through this regulatory process.
LT: What are the risks of going ahead too quickly if there was some adverse event in the early days of stem cell therapies, do you think the field could suffer?
CM: Yes, I mean I'm sure that's a possibility. We saw that for example with gene therapy where exactly that happened. It's very important that we do do the necessary research at the pre-clinical stage before moving into the clinic at an appropriate pace to allow us to try and make the very best possible analysis of the risks and the benefits. LT: But overall were you pleased with the response of the public to this dialogue?
CM: Yeah, I think we were absolutely delighted. The scientific community I think worked very hard to keep the public informed as we make breakthroughs in the science and also to comment upon international stem cell stories, some of which are more sort of the popular press, where we get articles say of miraculous cures in other parts of the world. And I think that the scientists have worked very hard with the media to put forward a balanced position of stem cell research in the UK and I believe that this report suggests that we've done a great job. The public clearly has respect for the scientists and I hope we can move forward in the future exactly the same.
If you would like to read the stem cell dialogue report, you can download a copy from the MRC website, visit mrc.ac.uk.
LT: Laure Thomas CM: Professor Chris Mason
