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Some 250 UU researchers are working to develop regenerative medicine on a daily basis. In their own words: 'I think it might be the most promising area of medical research of our time'. Most of these promises are still far from being fulfilled, so most people are unaware the field even exists. This is due to the fact that scientists are often reluctant to make bold promises. The regenerative medicine researchers at Utrecht ľ¹Ï¸£ÀûÓ°ÊÓ realised there wasn't much scientific information available about their field and set up a knowledge platform to answer questions from the general public. The platform isn't online yet and researchers are currently still answering the majority of questions via email. One interested member of the general public, , wanted to know whether there was any scientific use for the stem cells from her children's umbilical cord blood. 

 'For every tangible achievement of medical science, there are ten promises still waiting to be fulfilled', explains Louis Penning, regenerative medicine researcher at the Faculty of Veterinary Medicine and co-founder of the knowledge platform. Stem cells – the focus of Penning's research – have long been the subject of controversy. Fifteen years ago, Verhoeven decided to bank the stem cells from her newborn child's umbilical cord. 'At the time, they hoped we'd be able to use these naturally produced cells to cure all sorts of illnesses in future', she explains. The brochure urging her to bank the umbilical cord blood was part of a postnatal care package she received around the time of the birth. 'The brochure explained that while there weren't many applications at the time, stem cells might lead to a breakthrough within five years', she recalls.

For every tangible achievement of medical science, there are ten promises still waiting to be fulfilled

Knowledge

Scientists have learned a lot more about stem cell research in the past 15 years. For example, we now know that stem cells from umbilical cord blood are valuable, but have also learned that the storage of individual cells is relatively pointless. Many diseases have a genetic component which is simply copied along with stem cells. The chances you'll actually need them are also very small, and the number of available stem cells is often limited. The majority of online information on individual freezing is currently provided by commercial stem cell companies. As a customer of one such company, Verhoeven felt the often rather optimistic information was somewhat one-sided. 'Are they really giving you all the information you need to make a balanced decision?' she wonders. While the scientific community could certainly provide some nuance here, it remains somewhat hesitant to communicate on the subject. Penning explains why: The regulatory mechanism in stem cells is very similar to the one in tumours, so researchers are reluctant to use them on human patients. There's definite potential for spectacular results, but things can also go wrong'. If stem cell research goes wrong, it could seriously damage public opinion on the subject. Verhoeven had a similar experience. 'I read about people dying in Germany after receiving a controversial new form of stem cell therapy. That does shape your perception of the field.' She read about the new therapy in the newspaper. 'It seemed like the future of medicine, and my husband and I thought: now that we've read about it, we won't be able to pretend we didn't know it existed later on.’ We have since learned a lot more about stem cells. 'I think the scientific community should be sharing that knowledge more openly'. Penning argues.

The website is publicly accessible. We hope the initiative will help us restore some of the public trust science has lost over the years

Open communication

Penning is eager to share his work with the general public and provide more clarity on certain expectations. He hopes this information will benefit people like Verhoeven. 'Giving back to society', he calls it. 'Open Science and Open Data are obviously great, but most people obviously won't be reading our scientific papers'. The researchers hope the online knowledge platform on regenerative medicine will reach a broad audience. The website is publicly accessible. 'We hope the initiative will help us restore some of the public trust science has lost over the years', Penning explains. There's plenty of information available online, but it can be hard to tell fact from fiction. 'All the information on our knowledge platform has been benchmarked against the latest scientific insights. Still, we aren't trying to position ourselves as the fount of all knowledge. Lively debate keeps science interesting, and we aren't making any definitive claims. Verhoeven appreciates the new platform. 'Commercial companies exploit the fact that you'd do anything for your child and that kind of communication doesn't feel open and honest. We really need the scientific community to weigh in here.' 

It wasn't until I started working here that I realised how much human medicine could actually learn from veterinary medicine

Animal studies help humans

Penning is an inspired researcher, and is both enthusiastic and candid about his field. He made the transition from human to veterinary medicine twenty years ago. 'I felt there was still so much to learn about animals. It wasn't until I started working here that I realised how much human medicine could actually learn from veterinary medicine. He offers an example. 'Pedigree dogs have a higher incidence of certain diseases that are rare in humans due to inbreeding. We can now compare genetic information about those diseases with the far more limited data on human patients with the same condition. Penning's research is mainly focused on liver stem cells. He cites a large-scale study on dogs with genetic defects to illustrate how animal research can be applied to humans. 'We managed to correct the genetic defect in liver stem cells and transplant them back into the dogs. As it turned out, our findings could then be applied by paediatricians: the dog was exactly the same size as a small child'. These studies are carried out in consultation with paediatricians, so that the model can be directly applied to humans. 

Verhoeven also came across this kind of animal research during her quest for knowledge. She wonders about its relevance to human medicine. 'And how can the stem cells I banked ultimately benefit science?' Verhoeven is highly educated and quite capable of distinguishing reliable sources from bogus ones. Nevertheless, she would like more information on the subject. She is currently unsure what to do with her children's frozen stem cells. 'Since we found out that there's not much use for individual stem cells, we've been debating whether to have them destroyed or keep them.

Could my children's stem cells benefit science?

Regulation

Could they benefit science somehow?' She put this question to UU's department of Regenerative Medicine. Although she hasn't found a research group that could benefit from the stem cells yet, she plans to keep trying. With individual stem cell storage now more strictly regulated in the Netherlands, the company storing the stem cells of Verhoeven's two eldest children relocated to Poland. 'They started exploring all sorts of weird regenerative medicine', Verhoeven explains. The company's new direction left her feeling unsettled. Regulations are less strict in Poland, whereas stem cell science is heavily regulated in the Netherlands. 'Other parents are worried they won't be able to access the stem cells if their child gets sick, but I think that's an individual problem. More importantly, these developments are putting stem cell technology in a bad light even though it's such a wonderful field.'

Realistic promises

Penning eagerly agrees that the field is wonderful to work in. He has lots of stories worth sharing through the new knowledge platform. 'I recently presented a very interesting patient during a large consortium on a rare human copper deficiency disorder. Researchers in the audience were impressed by the wealth of data and the patient's relatives' willingness to allow liver biopsies (a procedure in which we remove a piece of the patient's liver). When I ended the presentation by saying "The patient is a Labrador Retriever", the whole example took on a new light and I noticed everyone's expressions change.' Penning hopes the new knowledge platform will help shine a new light on this complex issue. Verhoeven adds: 'The knowledge platform will offer information on realistic promises for the future. We really need to start communicating more openly and transparently on these issues.' 

This is an article from Vetscience issue 12 (in Dutch).